HI ITS A GOOD DAY TO BE ASLAN.

8/22/23 We did it!!!!

Aslan has been officially home 26 hours and doing great! He is seizing a bunch more and I gave a rescue med in the evening to help with his anxiety over new things, but we got 4 smiles today! Big smiles for brothers laughing their heads off.

And we got one yesterday when we picked him up at the hospital and he heard his papa for the first time in days along with the rest of us.

Discharge was awful, we looked for an extra 2 hours for a cord to the gtube pump that is his lifesaving thing and I almost had to file a police report. Thankfully I had hired a RN to be home that night and she was there at the house already and found the cord on my bed under a bunch of baby clothes and blankets, I had dumped my bag out on my bed that day to use it again for a 2nd hospital run and I forgot that I had the cord in that bag I dumped. When she called we left the hospital. Levi and William were extra hungry that night and I may have had food poisioning today because it was sitting out too long, but hey, Aslan’s here! The important stuff all got sorted out and the rest of the day was fine. The nurse let me sleep last night.

Also I may retract this later, but I think Aslan saw my face today with his own eyes!!!! I haven’t really gone into his epileptic encephalopathy on this blog but we were told by like 10 people in a room when he was 2 months old that his brain will not develop anymore and that he can’t see because his brain isn’t online much. So here’s the story today, I’m holding him and its a sunny afternoon (Aslan had no sun in his room the last 2 & 1/2 months.) I notice that the sun is near my face and Aslan is “looking” straight at me, but his eyes are still. Most of the time they bounce around or move quickly and repetitively side to side. When I move my face into the sun and the bright light lites up my nose and chin, Aslan SMILES and does a quick 1/2 chuckle, then immediately seizes but then gets out of the seizure pretty quickly and looks right at me again, eyes totally still and smiles again and goes right into the seizure again. Holy moly!

Ok so the boys are really happy he’s home. The whole day on discharge day they were singing “Oh happy a day” & “when Jesus took my sins away”…you may know the song. I started it but I guess Levi knows it! And William will sing anything so he repeats it later at the top of his lungs. So cute. We all read a story about our hearts in Aslan’s bedroom tonight before bed and it was mellow and lovely. All the rest of the time the 2 boys are really amped and exhibiting the autism but I anticipate that changing. I guess that’s another prayer point if you didn’t already know. William and Levi are both diagnosed autistic, very high functioning, but it does make our lives fairly difficult whenever there is a major change. At least this wasn’t a death change. I mean it could still happen, but so many of you are praying that at this point I feel it is unlikely. I really have no idea, but I’ve told myself that at some point if God is doing what I think He is doing I’ll know for sure. I may not know (sorry to be speaking in code, its just a very heavy subject) but Bryan and I are at least attempting to trust God either way.

8/20/23 Aslan is coming home!!! Try #3 🥳

Hi all, the last 2 weeks were full of turmoil, and it was mostly because we didn’t have home healthcare, which Vanderbilt knew & did their gut level best to get us the care we needed but in the end of his stay the recommendation was to take him home with no help or put him on hospice and consider stopping his feeds…that is until we got the call from our insurance saying we got home heath care the week Aslan was to be discharged, which starts tomorrow, Monday (as I am currently writing this.) I had come to the place (before we got the call 3 days ago) that I couldn’t fight anymore and just had to decide that God would get me through the next two weeks if that is all the time we had with Aslan because I knew that he would throw up in the middle of the night and I would be so tired I wouldn’t wake up to suction him. I was very stressed out, & considered changing custody, changing countries, anything that would buy us more time to find a home health nurse.

So Aslan is coming home, but now I’m happy about it. One daytime nurse has committed to us full time for 5 days a week until 2 weeks from now when another nurse will be fully trained and she has also committed to us full time. So by the end of two weeks of Aslan being home we will have 12 hours a day 7 days a week covered for his care. We will only have 2 nights covered (better than nothing!) so I will be navigating that so prayers for that especially would be so helpful. You all have been so faithful to pray. Thank you.

We need Aslan to have less seizures when he goes home this time and he is so dang sensitive! He was certainly not having the 100-200 seizures a day yesterday like he has been having. Honestly he went for a handful of hour and 2 hour periods with zero seizures. Today its definitely been a lot more than yesterday, but hey, he showed me what he can do.

Yesterday was the least amount of seizures I’ve seen since he was in NICU, except between 4-5 AM. I just had a 30+ hr stay in the hospital getting ready for discharge. So you can pray that he gets used to his environment quick because once he “learns” something he may not seize at all about it. For instance, there are only 4 movies for little kids at this hospital and when he “watches”/listens to one of them he doesn’t seize. But if I put on a different movie he seizes. Or if I hold him next to me laying down he loves it but that also makes him seize. So if I hold him like a baby as a nurse would, he can relax.

I did take him outside yesterday for the first time in 2 months and he instantly fell asleep and was passed out relieved and in instant peace. It was the first time I’ve been able to do that with him ever. Bryan took him in the hammock but I never got to hold him outside except for like 5 min. It was amazing yesterday. I definitely cried.

The other thing is prayer for the next few days before nursing gets here. And for my nights which may be bonkers. I talked to a night nurse this AM who had taken care of him a bunch and apparently he has a EARLY morning chat anywhere between 1 & 4 AM 😂 - Aslan starts talking because he’s lonely or needs a diaper change. He did it this morning at 4AM and then worked himself up and seized for the next hour while I tried to figure out how to comfort a baby who I haven’t spent 24 hours with in 2 months.

He’s sleeping now though. And my pulse ox equipment issue that we had with the last discharge is much improved. It’s because Aslan has improved and isn’t seizing as much and also the doctors said it was ok to have him at much wider settings since he ping-pongs at such extreme stats because of the seizures.

You can also pray I lose the baby weight. I’m doing a modified keto diet/Trim Healthy Mama now & I need to keep following the plan. I continue to go to physical therapy and am trying to get rid of my limp that shows intermittently.

Pray for Levi and William that they will feel the blessing their brother is and that I will be in their lives just as much as I can be. Pray for Bryan who is holding our home together and working so hard painting homes. Pray that we get back to doing music and that God will form this next season of our lives according to what His will is.

And pray for Aslan to begin to see, to swallow well, to stop seizing consistently, and to live and thrive. And that we will have more miracles to come. I will never forget that God healed him of hydrocephalus in the womb, and that Aslan is cheating death with God‘s abundant life. Lastly I pray that all of us, you reading along with our family, will thrive and find the pleasure God has brought to us in knowing the vastness of His love.

7/20/23

I saw Aslan today. I didn’t think I was going to but I was so sad of thinking that he might not come home and looking at all my baby gear I decided to go for 1.5 hours before work today. I still haven’t heard from neurology about the event on Friday with the 2+ hour seizure. He hasn’t fared well after it in my opinion. He’s had the rescue drug every 12 hours for a couple days and I know that’s helping. I asked for it today because when I got there he was seizing straight for 20 min. I did get a smile when he had consciousness. I did skin on skin and he really slept and went down to 1 or 2 seizures in the 40 min I was holding him after the rescue med, so maybe I just need to make a priority of trying to get there and hold him more. But I can only do what I can do with the rest of the fam. God knows that too. Still hurts to choose between my children.

I saw him last night too. It’s been so good to be there, but I am really grieving.

—Melissa

7/18/23

Hi everyone, Melissa here. I’d like to resume updates, and forgive us for not keeping up with it regarding our son Aslan. There has been an enormous amount of events that have transpired in the lasts month and a half and I’m actually glad we didn’t blog about it because I think we may have rushed into opinions and regretted it later. Also THANK YOU to everyone to gave to our meal train! We set it up for the week Aslan was going to be here after our help left, but sadly as noted below, we had to bring him back the night before I had set the meal train up to start. So I am saving the donations for when he comes home again.

Most of what we have been braving has been 3 attempts to bring Aslan home. Each time we were looking forward to having home health nursing but we have been denied, and this last time it was possible we could have been accepted by a home health company but this week there are no nurses available for anyone with any company.

OVERVIEW

Some of you may remember Aslan went home initially when he was one and a half months old and we wound up going back 4 days later because his seizures went from sub-clinical to clinical, meaning just in his mind to showing up on his body. I would love to say that they have gotten better, but it has been up and down. After being admitted then to PICU we were eventually transferred to the neurology floor, and they were ready to discharge us almost immediately, as there were no major medication changes we needed to do at the hospital. During this time we switched to a KETO diet for Aslan, and went down to 3 seizure meds instead of 4 in the hopes that he would have more awake time, and he did. Up until this point Bryan’s parents had been taking care of Levi and William, but when they had to go back to Canada we had a very long period, like 3 weeks, where we barely saw Aslan after being there every day, sometimes twice a day. We were sharing a car too, so between Bryan going back to work, my work 2 days a week, and the boy’s schedules and the fact that the hospital won’t let me take Levi and William to the room with me (it was approved for like 1 hour a month) I had to leave Aslan alone there. The emotional toll was awful. Bryan got to see him after a week and a half and I saw him a total of like 5 or 6 hours over 3 visits during those 2-3 weeks. We finally had my brother & S-I-L Nathan and Lindsay out to help and we took the jump again to bring Aslan home while several people worked (or didn’t work) to get us home health nursing. It never materialized and after a week and a half of doing it on our own, having someone watching him at all hours of the night, and on the recommendation of our insurance company and someone at the hospital, we readmitted Aslan. So Aslan has been at the hospital again for 3-4 weeks or so, and these weeks may have been the toughest other than that 1st month. But really it’s been grueling for much longer. So 2-3 weeks ago we had a commitment from a home health nurse that she would just finish out her contract with another family and then come be with ours! I was overjoyed!!! I was planning on Aslan being able to join our family around the 15th of July, just a few days ago, right after he turned 4 months old. We were about to start the 3rd attempt at discharge. A week ago I was informed that we were not a good fit for that nurse, and that there were no other companies that would take Aslan. We had another meeting last Wednesday at the hospital to update orders & rework some of the mistakes that had been made on the 2nd attempt to discharge, and another round of phone calls was made to the nursing companies, to find out that there are no home health nurses available anywhere, as I made note of earlier.

SEIZURES

So Aslan is now 4 months old. I saw a 4 month old baby today while I was waiting somewhere, and he was doing so much more than my Aslan is. I’ve purposefully held back the bad reports about Aslan and what he seemingly can/can’t do, can/can’t see as we have been holding on to the hope of seeing another miracle for him. We may be heading towards hospice, we aren’t sure. It would be so much easier for us to know what was going on with him if he was home. On Friday night I saw Aslan as it had been several days since I had seen him and when I got there he was in a continuous seizure. I pointed it out to the nurse (it took her 10 min to get to me…not a reflection on her, but just the way the hospital is-she’s a great nurse ) and another 10 min to get his rescue meds. Aslan seized for 2 hours straight when I arrived, and had probably been seizing for at least a half hour before that, but the nurse didn’t know how to recognize it till after I explained it to her. She had already paged the doctor 30 min before I got there, so it is likely what she paged the doctor about was him actually seizing. So who knows how long it had been going on. The point is that if he were at home that wouldn’t have happened. We would have caught it right away and given him the rescue drug. That night at the hospital 3 days ago he was given all the meds they could give and he was still seizing more than normal and I was really afraid as I went home that night to sleep that he would go back to the constant seizure as the 12 hour meds wore off. Bryan saw him the next night and it turned out that Aslan went back to being very sleepy and was not seizing. I didn’t know if he would survive the week honestly. I still haven’t been called by any doctor to talk about what happened that night. I’m waiting for a call that probably won’t come. I want to know what happens if he’s in a seizure he can’t get out of, and how close we were to that situation.

I’ve asked to talk to the ethics committee about his quality of life and hopefully that will be a very purposeful discussion.

WONKY OUTCOMES

So there were some things that really went wrong over the last month that haven’t been mentioned. Mostly involving A LOT of phone calls. Somehow I must have made someone mad because yesterday the department of human services, DHS, came to our home and said someone filed a claim against me for medical neglect of Aslan. Bryan and I both were home on Monday and they were able to finish what they needed for their investigation of me after about 2-3 hours. Thankfully they left saying they didn’t believe there was any medical neglect going on. But some of the accusations have left me to wonder if our shot at this last nurse was ruined because someone at the hospital (whoever made the claim had to have access to our entire file so I assume it was someone at Vanderbilt) made it clear to the home health staff that I was an unfit mother. Anyway, DHS is now also looking for nurses for us.

ASLAN IS STILL LOVED!

Bryan is at the hospital now holding Aslan and I plan on seeing him Wednesday, tomorrow. He is a little snuggly chunk now. We still love him very much, as I know you all do too!

I’m thinking about fasting and praying about what to do for our little guy. I can’t tell if the seizure I experienced on Friday is a sign that dysfunction is increasing rapidly or if Aslan is going to bounce back. I also have to wonder if the time away from the hospital has been God’s mercy in keeping me sane. It has certainly helped Levi and William. But there is so much left unknown; I haven’t been able to unplug from the feelings of this bizarre living situation while he is there without a constant caregiver. Not to mention that I had a baby and now he’s not a regular part of my life. It’s otherworldly. I’m grieving stopping pumping too. It’s been my main connection to him. We were really grateful my mom flew out to hold him for a solid week while I ran our house and Bryan worked. Generally though, I’m really sad that Aslan’s experience is that he is not held as much and seen during his days, but gets checked on and cared for at regular intervals. No prolonged time with anyone there. We are left hoping that is going to change soon, also knowing that he has some connection to God who loves him, and I know the nursing staff there love him as well and do a lot for him during their shifts. I’m so thankful for those nurses who are Bryan’s and my extension while we can’t be there. Love to you all,

—Melissa (and for Bryan)

5/29/23

Oh my gosh I’m sick to my stomach! I just spent an hour of precious time updating this blog and I just lost it all!!! (This is Melissa)

Here’s the short version: Aslan has been throwing up a lot. It’s because of 3 different reasons: slowed gut, intolerance of his meds in his tummy or possibly the keto diet, and seizures. So it’s likely that if he was home we, or a nurse, will be able to be more attentive and suction him as soon as he throws up. I don’t know how much it would help but it may cut the problem by half. Bryan and I are both working and still driving to see Aslan most days but it’s now for one or 2 hours only. Bringing him home will be intense and the prep beforehand is pretty extensive, but I have most of what I can get for now. I need to buy a button battery for the food scale, and find another pack and play, etc. Someone from church gave us a couple more baby bed sheets we needed now that I know throwing up may be an issue. We need a nurse to stay at home with us desperately. It’s the only way we bring Aslan home. We are going through Maxium home health company but they are having trouble finding staff.

He also has pneumonia but it seems to be getting better, (pray!) and they caught it early and immediately started treating with antibiotics. I wish so much I could be there and hold him. Soon enough, I’m sure. It has been a brutal week emotionally for me. The boys came home for summer break and they are not allowed at the hospital so we are choosing between Bryan working and not staying home with the kids and not seeing Aslan much, and seeing Aslan every day for hours like we were doing. But seeing that he got the pneumonia—I’m glad he was in the hospital because after a really bad throw up of meds 3 nights back they immediately X-rayed him and saw the fluid in the lungs & started antibiotics so it didn’t get infected. Kids like him die most of the time from pneumonia. Grateful I wasn’t at home figuring that out on our own with our own pediatrician. Not a reason to alarm though, the docs said Aslan is clearing this fluid in his lungs fantastically and he should be getting better really soon. (Just pray he does. I’m not there to monitor him and I just know he’d be feeling better if I was there. 😣)

They approved William and Levi to be there today for 1 hour (we actually got 2) and it was awesome to have all my boys together.

—Melissa (and for Bryan)

05/19/23

Aslan started Keto diet on Thursday at noon. “Traditionally the diet has been used for children with myoclonic, atonic and tonic-clonic seizures. In every decade since the 1920’s, studies have consistently shown that 50-75% of children with difficult to control seizures of all types were helped by the diet. Studies that have followed children on the diet for long periods reveal that 1/3 of children treated with the ketogenic diet have greater than 90% seizure control with half of these children becoming seizure free. An additional 1/3 gain a 50% reduction in seizures. The remaining 1/3 discontinue the diet due to its ineffectiveness or difficulty tolerating.” — From Vandy’s Handbook

Please pray the diet will be effective for our son Aslan. He’s been tolerating his Keto feeds so far. Thank you! — Bryan (and Melissa)

05/17/23

Good morning. Aslan’s been throwing up his feeds for the last couple days.

Nutrition works on his feeding plan each week to make sure he is getting his needed calorie intake at his weight. Aslan’s last weight was recorded at 10lbs 0.9oz a couple days ago and is now up to 85ml / 22 calorie diet over 4 bolus feeds each day. He has a 38ml/per hr continuous feed overnight.

Aslan started throwing up his feeds 2 days ago consistently first with Melissa, then overnight and with me all day yesterday. He refluxed both his 9am feed over 80min and 12pm feed over 90min due to 3 back to back seizures ending in 4 coughs — at the 50 - 65 mls mark and then was able to take the rest of his feeds though. We slowed down his 3pm feed over 2 hrs and he refluxed his feed at 75mls after a seizure but without the same coughing fit — it just came up with him being still and without warning. Slower helped him keep some more down for longer and he did finish the last 10mls of his 3pm feed. His 6pm feed came up at the end as well. He was holding down his continuous feed down at the 60 - 70 mls mark when I left last night.

SO…is it a capacity problem. Maybe? He exhibits stomach or gastrointestinal pain, some grunting and crying during his feeds. Aslan received meds for possible gassy symptoms yesterday. He doesn’t appear constipated.

Options? We can continue with longer feeds today to see if he holds them down. We could change to a higher 24 calorie diet at lower mls volume but it’s also a thicker potentially harder on his digestion feed. We could talk to our team about switching to formula only?

We are also considering switching completely to Keto diet formula. The Ketogenic Diet is more complicated but something that could potentially solve a few or more seizures for Aslan or do nothing. It would be a 3 day process or more to get him started on it at Vandy. If Aslan tolerated the Keto formula he would trial the diet for 3 months to see if it makes a difference. If it does? Aslan would be on Keto formula for at least 2 years or longer. If not? We could ween him back to his current diet. The diet is a special high-fat diet that is used for difficult to treat seizures. It’s more work for us, more medical blood draws and more medical visits for Aslan. That’s not as good. It does achieve everyones overall goal of attempting to gain more seizure control without added sedation. That’s good.

Finally we are starting to ween Topamax as of last night by 25% to see if we can get Aslan to wake up even more. Our team doesn’t really want to ween Phenobarbital without an increase Onfi at the same time. So for now they will evaluate Aslan’s tolerance of less Topamax over the next couple days.

Please pray for our team, Aslan and us as we continue to navigate his care this week. Thank you! — Bryan (and for Melissa)

05/14/23 Mother’s Day night

This is Melissa! So this may be more of an emotional/spiritual update than procedural. But first: Aslan threw up his feeds today, and also 3 the day before and 2 the day before that. Our nurse told me that when I got there today in the afternoon. She also told me that he de-stated 12 times today and none of them were more than 1 min and most were in the 70s or 80s. When I got there he had his eyes open though. I worry that he has no stimulation and just lays there with his eyes open seizing. Awful to think about but I’ll get to that in a bit.

I read on a box from a kangaroo shirt that skin to skin makes a baby sleep better, experience less pain and that 60 min of uninterrupted sleep is how their brain matures. So today I came prepared to do skin to skin. It was hard at first because I could feel him seizing quite a bit, lasting 30 min or so. But the staff started whispering and then he started really settling down. And then I experienced a bit of a miracle (at least to me): he went for 15 min without seizing, and this was 1/2 hour before his meds were due. So to give context, the last time I was there he seized for 1 & 1/2 hours leading up to his meds coming due, and at least 30 min afterwards. He was really peaceful and I was willing him to sleep. I was determined to get that 60 min. I got another 15 min without seizures right around the time his meds were due. He was also finishing a feed, they put it back to 90 min so he wouldn’t throw it up. Well, he didn’t throw it up! He also didn’t throw up his meds. And Aslan was having significant improvement with the time between seizures at a time of day where I didn’t think they could be controlled at all. We were like that for about 3 hours and then he woke up.

Okay so unfortunately that meant that he was awake when I left. Aslan looked nervous that I was leaving. He was looking with his eyes open in the bed, seizing off and on. I think it was because right at that moment I noticed (after someone got ice) the water/ice machine is right outside his door and the sounds go right in his room. There isn’t the constant beeping like on the PICU floor though. I was so nervous to leave him because the wonderful and quiet nurse said she’d check in with him but she had 3 other patients and would stop in when she could but couldn’t really spend any time with him. Great. I left the hospital crying.

On the car ride home I was telling God “My life right now doesn’t make any sense!” I was thinking about my mandatory visitor tag to see my baby and my other boys at home who have barely seen Aslan and Mother’s Day and asking God to be the mother to the motherless for Aslan. My reality is not a normal reality right now. The thing is, I’ve made that complaint to the Lord before and Jesus has made me a promise. One time, years ago when I was dealing with a severe bought of nightmares that started haunting me during the day, and I was 100% dismayed and confused, I had a vision of Jesus kneeling before me and He told me, “I promise with my whole heart I will remedy this for you.” Tonight when I said my life doesn’t make any sense I saw Him saying the same thing. I was reminded that Jesus did deal with those nightmares and that He was trying to tell me to think about His power and how He could really be with my child in room 33. So it’s not ideal. I think Aslan did seize a bunch today. Our nurse Kathy said as much. I want to hold him so he grows. But am I going to feel just as bad when he’s home upstairs seizing while I make snacks or play Lego’s or whatever? I can’t do it all. I need to decide I don’t have enough for Aslan to fix all his needs. It’s so much pressure on myself and I think that’s what God was saying. Essentially, believe He is going to fix things and me not being there is a problem for sure, but God is aware and working. Working specifically and gloriously on my family’s behalf, because He is drastic, and motivated by His own compassion for His broken creation. I’m so thankful that Jesus paid for me with His own life. Like that wonderful verse says, “if God did not spare his only son but delivered him up for us all, how could he not freely give us all things?” (Romans 8:32) All in all, I am very thankful for this Mother’s Day. Thank you to all of you who prayed for me. And if the pictures below show anything, it is the glory of a mother: the way I was built and enabled by God to perfectly calm my child, even with the most severely sensitive brain. — Melissa (and for Bryan)

PS my time with Levi and William was fantastic today. We danced and sang and squealed (myself included) and it was also glorious.

05/14/23

Melissa and I have continued to spend time with Aslan over the last several days at Vandy. He’s been steadily weaned from Keppra and is off it now. Aslan is still on Vimpat, Phenobarbital, Topamax, and Onfi anticonvulsants as of now every 12 hrs. We are talking with Neurology about taking him off of Topamax this week. He is waking up a little more.

Aslan is 2 months old today! He’s bigger now which is good at 9lbs 15.3oz last weighed May 11. His head measures 38.5 cm (15.16”) now which is up from 37cm. Good signs.

Aslan is still having frequent seizures every 5 or 10 minutes when he is awake. He was having trouble keeping his feeds and drugs down last night from around 6pm on. Tough guy and hard to watch.

I held Aslan well into the night and morning praying for him. I love telling him about all the fun things we’ll get to experience together as a family when he comes home again. I love talking to him about his Mama, brothers Levi and William and how much he is loved by us. He hears about Jesus every day and sighs deeply as though specific words call to his spirit. He’s hard to leave at the hospital but he needs 24/7 care right now.

Today is Mother’s Day and Melissa plans to spend the day with Aslan this afternoon. Thank you for praying for Aslan. Happy Mother’s Day everyone! — Bryan (and for Melissa)

05/09/23

Aslan is a bit of an enigma for Neurology. They don’t believe his seizures will go away but are not exactly sure what the balance will be with his meds. He continues to destat with his seizures and had a few larger destats overnight. Our goal with Neurology remains to try and help his med balance make him as awake as possible for development. He’s about on half as much Keppra now but no further changes will be made today. All of us want to make sure his seizure control continues to be in a more stable place as he draws down on different meds over time. We also want to see his seizures decrease in frequency. He was being evaluated by 3 Neurologists when I arrived this morning which was nice to see.

Melissa was with him yesterday and I am with Aslan today. We are taking turns holding him and doing his cares like changing diapers, temps, changing cloths, feeds, and meds — the staff of course is taking care of some of those things here for us 24/7. We are still looking for at home nursing to help with his care when we are discharged. If you know of people who might be interested in home nursing and are qualified please have them contact Melissa.

I met with our medical supply team today who supplied us with emergency oxygen for Aslan. They have supplied us with both at home and on the go oxygen for waterfall trips :-) , hiking and camping of course. He will not be on a continuous flow but it’s good to have around for urgent care.

Aslan will be moving rooms today just down the hall here. I guess they need his existing room or it’s better for staffing. Aslan continues to explore the hospital though. Why not? We will be excited to have him home again in the near future. For now just a few more cuddles and pictures. — Bryan (and for Melissa)

05/07/23

Aslan was transferred out of PICU to Pediatric Neurology on the 7th floor of Vanderbilt Children’s Hospital May 5th. His nurses in PICU said that he’d been stable for 24hrs with no destats — which wasn’t true but hopefully he will be better served on the 7th floor since his problems are Neurological.

The transfer of rooms was made at around 6pm when we were away from the hospital and taking a brief family trip to a waterfall with Levi and William. We received multiple calls at the waterfall and the PICU staff didn’t feel that Aslan needed the kind of support or monitoring offered in PICU. Neurology had been overseeing him in PICU so I think it made more sense logistically moving forward for the hospital.

I returned to Vandy around 11:30pm May 5th to see Aslan’s new room on the 7th floor. He looked good and his Pediatric Neurology room is a little bigger. I was told Aslan ended up destating on the way up to his new room but as always bounces back pretty quickly. He usually recovers his oxygen stats in the time it takes for a nurse to respond to his room. So he’s basically already climbing out of his destat most times when they get there.

Just after 2am in the morning I woke up to a meeting with a Pediatric Neurology Floor Nurse and Aslan’s Bedside Nurse letting me know that Aslan had two back to back destats to the 40s and they wanted to ask me some questions about his baseline breathing, seizure behaviors. After his back to back destat we were trying to determine whether his team in PICU needed to be consulted. We decided to just closely monitor him overnight.

The next morning May 6th Aslan continued to destat which has been considered part of his baseline. I held him most of the day and watched him seizure and destat to the 50s but recover quickly when those events happened. He was mostly sleepy with a few awake moments. Cute as always.

Melissa went back to drop off milk at 8 PM last night and none of the nursing staff was told about his feeding needing to be mixed at 22 calories, the timing of the feeds, the appropriate amount of the feeds, the oral care he needs to not keep his airway from being glued shut (it was when she got there and he was having trouble breathing but they had oxygen there so he wasn’t in danger…he must have felt pretty bad) and that his temperature runs higher than most babies, around 99 degrees. None of this was in the notes passed on from PICU. When she arrived he was folded in half stuck in the hole of a boppy that he had been placed in (a half doughnut shaped pillow) and the nurse was in the other room. Apparently he had only be stuck there a couple min, but thank God Melissa decided to go to the hospital that night. She spoke with the charge nurse and she added all the necessary notes to his chart and was very attentive.

Aslan’s on 5 anticonvulsant meds and we are now having conversations with Neurology about weening him off of a few meds to make him more awake. We are also moving towards eventually going home. He will be with Pediatric Neurology through at least mid-week this week. Please pray we find a nurse to come home with Aslan. Melissa heard that there are 3 companies that send in home nurses and in one company they have 500 empty shifts a week, meaning an incredible lack of staff. We need nursing care to bring Aslan home so this is one of our biggest priorities. That and having awake time with Aslan so he will be able to have development. He does look like he’s making headway in this direction as we are hearing more little cries. He has the best voice and though the quality of his voice is a bit softer and smooth right now, you can hear it rather well because his mouth and nose are so open the NICU said he would be louder than most babies. We will take those little blessings. — Bryan (and for Melissa)

05/03/23 Update

The last few days have gone better overall for Aslan. We moved rooms and things have settled down a little. Our conversations around Aslan’s seizures have been more about seizure control and adjusting meds to a better schedule for us when we go home than the elimination of them.

At the beginning of the week Aslan started a new drug called Onfi. It’s another anticonvulsant that Neurology would like to try and replace Phenobarbital with hopefully. Neurology also plans to wean Aslan off some of his anticonvulsants so that we go home with fewer meds. That would be great for Aslan and us!

This week our team discovered that Aslan has a unitary tract infection. Something called Enterococcus and that infection may actually be increasing his seizures. He’s been put on an antibiotic called Ampicillin. It’s possible we’ll see a decrease in his seizures over the next couple days once the infection clears. Aslan’s spiking a few fevers over the last few days of 100.4 and 100.7 but thankfully coming back down into normal range fairly soon after those temp readings. He’ll be on the antibiotic another 5 days.

Unfortunately getting Aslan started on the antibiotic was a bit of a drag. Aslan was about to get his first dose of the antibiotic when his IV went bad in his foot. His nurse had to take it out and eventually called an Ultrasound Nurse to look for a better place to replace his IV. The Ultrasound Nurse couldn’t find a vein she liked and called on a colleague for a second opinion. That colleague stuck him in the foot again and missed. That same colleague thought we might need to stick his new IV in his head and we said NO, absolutely not. Aslan cried his guts out for about 30 minutes during it all as I held his hand trying to comfort him a little. It sucked.

After the failed attempt the staff wised up and called a TOP GUN Ultrasound Nurse who showed up later that night. Maybe 3 hours past when they’d hope to start Aslan on his antibiotic. This guy was AMAZING. 5 minutes later Aslan was good to go and yes he cried through it.

Aslan’s learned to laugh this week. Yes! Yesterday while talking with Palliative Care he laughed for 20 seconds straight and then again a little later on — a little bit of sunshine amidst a slog of seizures. He’s also learned to smile. It’s really wonderful to see and hearing him laugh makes my heart glad. He did it first when Melissa was holding him. Palliative Care was delighted. The nurses at PICU are also holding him more too when we are not there. We love that for him. They love it as well.

Aslan is a sensitive little guy, his cries are endearing and all the anticonvulsants make him moody maybe. He’s strong, tenderhearted, and joyful. We catch glimpses of what he may be like under his seizure burden and sleepiness. Of course we continue to pray for Aslan’s complete healing in the name of Jesus. We believe for miracles in every area of his development. It’s a lot day after day but Melissa and I still stand in a continually place of intercession before God for this little man. Thanks again for praying for our son Aslan Judah Raphael ‘Lion Praise God Has Healed’. — Bryan (and for Melissa)

04/30/23 Update

I just got back to PICU after serving at a Father / Son weekend in KY. Levi and William were able to go up with me and experience some adventurous moments together there. Levi did a zip line for the first time in his life just because he wanted to and got on a real horse. Liam decided he wanted to try and rope climb a tree for about a minute but wouldn’t get on a horse. We had a lot of fun at the camp and enjoyed an enormous fire Saturday night. A good fire. A wonderful time with my boys and other men. We returned this afternoon.

Aslan my 6 week old boy has been steady at the PICU overall. Melissa has been with him the last couple days, holding him and waiting for more answers about his destats. He’s still destating his oxygen but mostly not as much. They think that maybe his largest destat moments happen when his morning meds roll off before his nighttime meds are given. We meet with his epilepsy team this week.

The big news of the day is that Aslan’s daytime nurse accidentally dislodged his G-Tube while giving him a bath. She was able to put a new one in right away but radiology needed to make sure it was in the right place before using it. Aslan took a trip downstairs for an x-ray. It was a critical situation and I am glad that I returned to press the PICU staff for more immediate resolution of his x-ray read which could have been delayed into the next morning. That would mean his G-Tube feeding would be delayed potentially overnight and his G-Tube nighttime seizure meds due within the hour could be problematic as well. They stop gapped the feeding problem with IV fluids and pushed radiology for approval for feeding and meds through his new G-Tube. They got the go ahead. Thank God! The event delayed his nighttime meds by about 30 min and feed by 5 hrs.

Aslan was made uncomfortable by this event. He was seizing a fair amount with me tonight. The G-Tube was a fairly big deal and more than I was expecting to help walk Aslan though. I am praying for answers this week. — Bryan (and for Melissa)

04/28/23 Update

Aslan will be monitored for a few more days here in the PICU. He’s having a good snuggle with his Mama this afternoon. Yesterday was a little rough. One of Aslan’s seizures looks a bit paralyzing and his eyes go up to the back of his head. His oxygen destats to 30s, 40s, 50s with this particular one and he’s given extra oxygen for recovery. He had one of these after having a blood draw for a Phenobarbital level yesterday and right before we were scheduled to change rooms in PICU. He also threw up his feed and was aspirating a little, choking and trying to clear his airway during this event — which he finally did recover with help.

We are weary of his seizures and destats. We continue to make daily hospital trips and stay overnight at times in PICU. Pray often about all of Aslan’s health concerns. Pray for miracles. The journey feels long already for sure. His seizure burden is intense. Everyone here thinks Aslan is so adorable though. He’s a bit of a famous baby on multiple floors of the hospital now. Nurses on 4, 11, 5 talk about him or know of him or have taken care of him. Aslan’s also checked out the ER at least once.

He is on 4 anticonvulsant meds now and there is a plan to send us home eventually with oxygen for rescue / recovery purposes. Hopefully more answers will come with time. We will begin our outpatient appointments for Aslan next week but will likely still be in PICU or a regular hospital room designed for monitoring him before going home again. We’ll see.

04/26/23 Update

Aslan enjoyed a short stay at home with a baseline of seizure activity 7 to 10 per hr for the last several days. Levi and William have really done well with him being home and somewhat normal was nice for everyone. Unfortunately Aslan destats his oxygen level briefly to 81 or 79 with his seizures and then bounces back pretty quickly into the 90s and 100 after them. He doesn’t always drop his stats with seizures though. This has been part of his baseline.

Last night after dinner Aslan had a seizure and dropped his oxygen stat to 60 with intermittent breathing. His recovery to 100 was prolonged about a minute and half. After this destat event Melissa and I decided to bring him into the ER at Vanderbilt Children’s Hospital to reassess him. As of last night around midnight we are now in PICU with him at Vanderbilt Children’s Hospital. Aslan dropped his oxygen stats several times overnight to 60s at the hospital. He has been stable today mostly but has dropped his oxygen stats to 60 two times this afternoon.

Neurology is assessing him and he is on his 4th anti-seizure med Topamax again in hopes of more seizure control. It looks like his baseline is a seizure every 5 to 10 minutes and they remain fairly short. We are trying to determine why he is dropping his oxygen stats more with them. Sedation from meds, Aslan’s brain, seizures transferring oxygen from his foot where the pulse oximeter is to his brain, etc. ? Maybe a bit of everything. He will get another ultrasound of his brain today to see if something has changed.

We do have several follow up appointments scheduled next week as well. It looks like they may be monitoring him at least overnight again. — Bryan (and for Melissa)

04/20/23 Update

Aslan is finally home with us. Yesterday and today have been a bit of a whirlwind of things needing to be completed and confirmed before discharge. Our team let us know this morning that we were clear to go home. We left NICU around 2pm from the 11th floor where we’ve been for a little bit over a week or so. I can’t believe we started our journey with Aslan over a month ago on the 4th floor with so many different teams of Drs, Nurses, etc. NICU felt at times like a sprint and other times like a long distance race we were exhausted from running. We are so thankful though for the entire NICU staff at Vanderbilt. They do incredible and inspiring work. We are overjoyed though to be home in one place as a family tonight.

Aslan’s seizures are still an issue. He is experiencing 7 to 10 at most in an hr. Unfortunately up from 0-5 per hr. Many times they are short and sometimes a bit longer. Some are sub level and some cause repetitive moment with his arms, legs and some have vocalization. We continue to redirect him when possible and pray God intervenes in supernatural ways for him. We will be following up with Neurology in the next week and months. They would like us to count how many seizures Aslan has in a typical day on average. They will follow up with more EEG and med adjustments in the future. They also stopped Topamax the same day for various reasons. Mostly that after Aslan’s G-Tube surgery, pharmacy got his Phenobarbital dose below therapeutic levels accidentally. The mistake made was that Aslan requires 2x more than a normal infant at his weight, and the pharmacy changed the dosing to half Aslan’s usual levels thinking he was a normal baby. The Neurology team found this yesterday during a Phenobarbital level check after his G-Tube surgery and doubled his Phenobarbital back to therapeutic range. They believe this is one reason for his increased activity.

Neurology also asked about adding Topamax back in the mix yesterday and I (we) said no. Aslan’s stats dropped significantly the day they started Topamax and tried to up Phenobarbital in the same day. They also didn’t see much immediate improvement with Topamax. It’s in their back pocket for the future. More work to do.

Tomorrow we (Aslan) will follow up with our Pediatrician in Franklin. Follow up with Neurology, Vanderbilt Home Care In Home PT/OT/SLP, and Private Duty Nursing. Then Aslan has a scheduled MRI Brain Rapid Sequence WO Contrast May 4, Neurosurgery. May 8 for Feeding Eval, Hearing and Speech, Craniofacial, Nose and Throat (ENT) Otolaryngology. May 11 Heart Echo, May 17 Thoracic Surgery G-Tube, May 22 Endocrinology, and May 31 OT / PT. June 1 Auditory Brainstem Response Cleft (Hearing and Speech) including Amplification Consult, June 28 Genetics and Genomic Medicine. July 6 Eye Institute Franklin, Sept 12 Neonatal Development, etc.

All of our follow up instructions arrived in a blue folder today with a rocket ship on the front that says 3. 2. 1. BLAST OFF. The picture reminds me immediately of my son William who is 3 now and says 3.2.1. LIFT OFF around the house with his various toys becoming rocket ships most days — sounds and all. A little sweet thought as we walked out of NICU feeling the weight of our last months experience — tears, joy and other emotional / physical exhaustion.

We are all under one roof tonight and it feels right. Levi and William are sleeping in the other room after a full day of fun with another friend of ours. Aslan is in our room enjoying another feed and resting from his month long adventure so far. Melissa and I will be up at different times throughout the night, early morning caring for him.

We are continually thankful for all your prayers, words of encouragement and gifts. Thankful for family and friends who have celebrated with us and have stepped in at different times to help carry the weight of all this with us. It takes a village. — Bryan (and for Melissa)

04/18/23 Update

We had a significant set back overnight which has delayed our hopes of being discharged today. We are on track to maybe come home tomorrow. Aslan is experiencing clinical epilepsy seizures as well as sub level seizure activity — sudden, uncontrolled burst of electrical activity in his brain. Melissa and I had noticed some rhythmic seizure activity while holding Aslan over the last few days and asked Neurology to follow up to make sure they were all sub level seizures before taking him home. Aslan has an EEG on again as of 5pm last night and Neurology confirmed clinical seizures this morning. The team has introduced a new 4th anti-seizure med called Topamax. He received his loading dose and first dose earlier today. They are also upping his Phenobarbital anti-seizure med level to see if they can get better base line control before heading home. Aslan will have his EEG on overnight into the morning.

The assessment of Aslan’s swallow study showed both silent aspiration and aspiration with immediate strong cough/throat clear. It is recommended that for practice/maintance of feeding skills we offer 5ml one time per day. Aslan exhibits an impaired oropharyngeal swallow characterized by inefficient suck, passive leak over base of tongue, delayed swallow initiation, and vallecular residue. We have been recommended home health feeding therapy and that Aslan use his G-Tube for his primary means of nutrition.

Melissa and I are almost through all our training. We actually have our car seat at the hospital this afternoon. Aslan is testing it out. We are checking his vitals while he sits in it for a while. He’ll have his EEG on.

We have been trading off at the hospital a little more. I will be visiting again tonight to help monitor Aslan’s seizure activity. The NICU can definitely wear a person down over time — day after day. We are ready to have our family at home. — Bryan (and for Melissa)

04/16/23 Update

It’s been a couple days of steady progress towards Aslan’s discharge. He’s one of the most or the most stable babies on our NICU floor. Most of our time has been spent learning to take care of Aslan ourselves. On Friday we were given supplies for home and we are training. Our son will have to be fed by G-Tube for a good while around the clock on a schedule with an Enteral Pump. We have a month of supplies for this and then will continue to reorder. Our box of supplies has dressing bandages for Aslan’s incision site around his G-Tube which we will be cleaning and changing a split gauze dressing regularly. His original G-Tube surgical dressings have not been changed by his Dr yet. Usually they are changed within a week of surgery. That means we won’t be cleaning his G-Tube incision area just yet and may have this done out patient. It will need to be done 2 times a day. We also have a Pulse Oximeter for home.

Aslan’s doing really well with his 5ml bottle feeds. He takes a bottle once in the day and once at night. It takes roughly 10min to 1/2hr to bottle feed him with 5ml. He is able to coordinate well when he decides to and takes interest. He get’s 66ml/per hr through his G-Tube every 3hrs. That is what he will need to do by mouth or maybe more depending on his weight to have his G-Tube eventually removed. Hopefully he will have a swallow study done on Monday to determine if all the milk by bottle is going down the right way. We need to be sure he is not aspirating before trying more volume. He does enjoy his small bottle feeds and gives me the normal pleasant baby sounds. I am over simplifying this situation because he won’t have his upper baby teeth, etc so he will need dental work too. This will all impact his eating as he grows and normal calorie intake for 2 months discussion before talking about removing his G-Tube. We appreciate your prayers for this.

I will take my G-Tube and CPR course Monday and Melissa will learn his Enteral Pump system today and tomorrow. Melissa will also try to feed Aslan 10ml by bottle tonight. Speech therapy just let her know that Aslan can try just a little more by mouth tonight because he’s doing well with 5ml.

Aslan’s been placed in a new crib at Vandy NICU with a label HARD Manufacturing Co Inc. because his ‘spaceship bed’ Incubator was wheeled out of his room yesterday for good. His brothers Levi and William got to watch his nurse change out his sleeping arrangements during their last visit to the hospital yesterday. They loved seeing Aslan at NICU again and we got a small feel for what it may be like taking care of all three of them at home — a lot of work. We also told Aslan he is coming home with us soon, he had his eyes open, and he smiled.

Before we leave we will get Aslan’s plan of care. He will need accurate measurements of 3 different anti-seizure meds by G-Tube in addition to his milk every day and night. We have yet to walk through supply for his meds which is another highly detailed thing. His milk will also be fortified by a little Similac Powder each feed/every day.

His plan of care will also list all of his upcoming out patient appointments. I remember our current Neonatologist listing about six different things within the next month with different Drs. We will get the full schedule soon and based on our latest conversations during rounds with our Drs we will be discharged maybe as early as Tuesday morning.

Thank you for praying for our family and your gifts to us in this season. Melissa and I know that God is with us in all of this and we have felt surrounded by you all.

Please continue to pray for Aslan’s full healing. Specifically pray for his neurology, feeding, and blood pressure (currently a little consistently high), and weight gain. Pray also for his upcoming surgeries this next year. Finally pray for our boys as they adjust to Aslan coming home likely in the next few days. Many prayers have already been answered and we believe God works all things together for good! Thank you! — Bryan (and for Melissa)

04/14/23 Update

Aslan had his big 40 min - 1hr hearing test today. He currently has mild hearing loss in both ears believed to be caused by fluid in the middle ear. He can hear all frequencies 30 to 40 db in both ears as of now. Normal range for hearing is 0-20db. The good news is that this more comprehensive hearing test also can bypass the middle ear and check the Cochlea directly. The Cochlea is the auditory area of the inner ear wrapped like a coil and auditory nerve from there that transfers sound information to his brain. Aslan’s Cochlea on both left and right ears are hearing all frequencies at 20db and a little lower than that in normal range. Praise God! Aslan could potentially wear a Cochlear BAHA to help his hearing now.

Audiology believes fluid is the cause of Aslan’s mild hearing loss and that his palate surgery will most likely improve his hearing in a year or so. They checked for fluid in the middle ear on both Aslan’s left and right ears and found fluid there. They will drain the fluid when he has his eventual palate surgery. He will also have another hearing screening when surgery is completed.

It is possible that Aslan could potentially have bone malformations in his middle ear (another cause for hearing loss) but that hasn’t been reported from his MRI. The theory today is that it is more than likely fluid causing a dampening in his hearing and it is a common finding in cleft babies. A good day!

04/13/23 Update

Good evening. Aslan is continuing to make progress the last couple days. Speech Therapy came by to test Aslan’s suck, breathe, swallow coordination this morning with a Dr. Brown’s special bottle. He confirmed that he has coordination for mouth feeding with a 3ml test. He did well! Speech Therapy is confident enough to have Aslan take 5ml of Mama’s milk from a Dr. Brown’s special bottle per day. They will follow up with a swallow test next week to make certain he’s not aspirating but he’s doing all the right things they like to see. An answer to prayer.

Aslan is also up to 66ml again. Full feeds through his new G-Tube every 3 hrs over 90 min. He is tolerating his feeds great and has barely spit up. Wonderful! Our team is also setting up a 4hr continuous feed at night so that we can sleep more when we come home with him. Aslan will get a continuous feed at night and the rest 66ml every 3hrs over 90min or hopefully condensed. Aslan’s new G-Tube will really help him get all the nutrition he needs. His G-Tube has also delayed our discharge until next week because we are waiting on supplies for it. We thought be might get out of NICU Saturday with Aslan but not yet. It actually works ok for us because now I can take some educational classes in person Monday on G-Tube and CPR.

Aslan had his hearing screening today. He passed his hearing test in his left ear and failed in his right ear. Audiology let us know that cleft palate babies can have hearing issues caused by fluid moving around and making sounds muddy until they have their palate repaired. Audiology will come back tomorrow or the beginning of next week to check his ears again because they can get a different result. They will perform a 40 min hearing examine to determine Aslan’s overall ability if he fails his basic test for his right ear a second time. They use a clicking multi-frequency 3000 - 4000 hz at 35db. Aslan could hear it in his left ear but not his right. Please pray for his hearing in both ears.

We are still concerned with Aslan’s seizure status. He is doing one repetitive motion at times with his breathing and arms which is seizure like possibly. We are unclear what it is but will follow up with Neurology in the coming days. Neurology does feel though that his seizures are controlled. We will go home with 3 anti-seizure meds to give via his G-Tube. Pray this issue goes away! — Bryan (and for Melissa)

04/11/23 Update

Aslan’s G-Tube surgery was a success. 40 minutes, 2 incisions, and all his anatomy looks normal in his gut. Praise God! He has a MIC-KEY that only potentially comes out after Aslan proves he can get all his calorie intake by mouth for 2 months. His surgery wrapped up around 1:50pm today and they are beginning his first feed just after 7pm of 16ml over 90min. Now they will watch to see how he tolerates it and if he has some reflux they will take care of it. Aslan’s Dr let us know that Aslan may be a little ticked off about his surgery tonight but his nurses will use some meds to help him feel comfortable also.

Aslan and us have been moved to a new room at Vanderbilt Children’s Hospital for NICU families like ours who are now practicing to return home. It’s a large room with a couch so Melissa can stay with Aslan. (Finally! It’s almost been a month since he was born.) So awesome! Melissa will take a G-Tube class in-person tomorrow and I will follow up with a video class this week. We may now be a week away from discharge. We will see.

Aslan is doing great! He has a very long way to go but has made continuous improvement in almost a month at NICU. In fact, Melissa took video of Aslan sucking on a pacifier tonight after surgery so he may have a suck reflex after all. Time will tell. We will have many out patient Dr appointments.

Thank you all for your prayers and generosity to our family. Your messages have really encouraged us deeply throughout this difficult time. Melissa and I continue to walk by faith and not by sight with him. His life is already a miracle. Every day is a gift. — Bryan (and for Melissa)

04/10/23 Update

Aslan’s room air trial has gone well. His respiratory has looked good overall and oxygen stats have been 100% many times without his Nasal Cannula. He’s 8lbs 5.7oz last weighed and 19.29” in length. His overall temp has averaged around 99F which we are told is more typical for babies with increased neurological activity. He’s been 98.8F several times since noon, so a little warmer than typical.

Aslan continues to practice eating and digesting every 3hrs. He’s having some difficulty keeping his feeds down at 66ml over an hour period. I helped him get through some feeds yesterday but overnight and today he’s had a few more spit ups. His team may go back to a longer period for feeding 66ml but have been trying to get his stomach ready for G-Tube surgery.

Aslan’s G-Tube surgery will happen tomorrow at 11:15am and Melissa signed release forms today. He will have 2 to 3 small incisions for the G-Tube placement tomorrow — 1 is in his belly button and 1 is in his abdomen…and maybe 1 for another camera if they need it there to make sure that they place everything correctly. The risks in this surgery are minimal but not zero. Aslan will need to be intubated and sedated all over again. He will be out of his regular room for approximately 1 1/2 hrs. We will not be able to go into surgery with him. We will be with him before and after his procedure. Please pray the incisions go well and that there are no complications. Also that Aslan wouldn’t feel discomfort afterward. It will be nice for him to no longer need his feeding tube. He chokes it up every so often.

Melissa talked with Neurology again today. Aslan’s brain MRI shows some Lissencephaly (smooth brain) and some folds. It also shows large fluid filled ventricles where there is no brain where brain should be. His abnormal brain development is what they believe cause his sub level seizures. Overall they want us to treat Aslan as normal though. They believe at some point he will be delayed or will show us his limitations. They can’t say for sure what Aslan’s disabilities will be, if anything. — Bryan (and for Melissa)

04/07/23 Update

Aslan’s full exome test came back today and he is negative for Mitochondrial Disorders. Gene CSMD1 does show a ‘Variant of Uncertain Significance’ (not a diagnosis). CSMD1 is a protein coding gene. Aslan’s variant happens at c.839 C>T which creates a protein p.(P280L) instead of the expected p.(P280P). Aslan’s ‘Mode of Inheritance’ for this variant is unknown. Research is still being done for what it means to have a change in this gene but some have had neurological issues with changes to this gene. Perhaps gene CSMD1 deals with brain development but we and they don’t know at this time.

Genetics has also looked at Aslan’s Clef Lip / Palate, Ventriculomegaly, AGenesis of Corpus Callosum, etc and have found no changes in his genes. There isn’t an answer with genetics at this time explaining Aslan’s various anomalies. There may be an answer in the future as genetic research continues to advance and make progress.

I was also there for Aslan’s eye exam this afternoon. The Dr dilated both of his eyes, placed a speculum to open his eye lids, and looked intently from various angles through a magnifying glass. He does have Coloboma in his right Iris. The condition is called Iris Coloboma. It’s just his Iris. Aslan also has smaller optical nerve connections but his optical nerves are connected and intact. They are a little malformed or different which we had already seen from his MRI. This all means Aslan’s eye sight will be near normal to poor based on how he develops. They will re-evaluate him in 4 months and then follow up regularly. Please pray for Aslan to experience great vision.

Aslan’s team let me know this morning that they think he will be able to live on room air alone. He is very close to already doing it at 21% oxygen and 1 liter flow. The plan is to test this theory out tonight by removing his Nasal Cannula for a bit. Please pray it goes great! — Bryan (and for Melissa)

04/06/23 Update

Good evening. Aslan changed rooms to G Pod today which is a bigger room for him and us. There is more light in here overall and that will be nice for everyone.

Aslan is down to 21% oxygen with 1 liter of flow, down from 30% and 2 liters of flow. He is so far doing great with the decrease in his oxygen. In fact our team said that they almost took his supplemental oxygen support away completely. Wonderful news!

He has also been working on tolerating his back today and overnight- getting him ready for G-Tube surgery (now likely the beginning of next week.) His overnight nurse said he only dropped in his stats once while on his back last night. That is a great improvement as he hadn’t been tolerating it. The nurses find that sucking out secretions from his mouth help his stats come right back to where they need to be, so they are becoming more confident that Aslan can breathe well being on his back. Still no ENT to confirm any structural issues that may be impacting his breathing while on his back. But we are told the ENT will only come now to do a scope if necessary and it’s not urgently required at this time. Basically Aslan’s doing really well with breathing.

The official read of Aslan’s last echo did show basic improvement to the overall function of his heart. Alsan’s heart is headed in the right direction. Still good news!

Aslan is now mostly practicing eating. They give him 66ml of Mama’s milk fortified with 5ml of HMF for increased calories overall. He receives a continuous feed every 3hrs for over an hr. So most of the time when we are holding him now he is waiting on his stomach to digest by feeding tube. He does spit up some on us but it’s all good.

Guess who’s walking again 💃 😊 Melissa has had a hard recovery since the preeclampsia including an ocular migraine (long lasting blurry vision). Tonight she is still exhausted but her legs have gotten much stronger and she feels much better from the waist down.

Melissa has now held Aslan 5 times and I have a few more over the last week. He opens his eyes for us every day or night when we visit him. As we have been starring into his eyes more we have discovered that he has Coloboma in his right eye. Not good. We will learn more soon about that we hope. Aslan should have an Optometrist see him this next week for the Coloboma and we are still waiting on an Audiologist for his hearing screen.

We have another genetics test result coming back any day now as part of the exome test we took last month. Maybe we will find answers there for Aslan’s multiple differences. Thank you for praying with us. — Bryan (and for Melissa)

O4/04/23 Update

Good afternoon. Aslan remains stable and we are having a few more opportunities to hold him. Last night was wonderful for Melissa after a long wait and dealing with her preeclampsia. Aslan finally open his eyes with her and they had a few moments together. Praise God!

Aslan is waiting for a few tests this week including an ENT evaluation related to breathing on his back, audiology for hearing, and a follow up echo for his heart function. Speech Therapy also came by this morning to try a pacifier with him to determine his desire to suck on it. So far Aslan is just content to let it be there. She also tried a specialty bottle with him but was reluctant to try milk yet because she doesn’t want him to make a negative association. We are welcome though to keep trying the pacifier as long as he doesn’t gag on it. She will be back tomorrow to try again.

Our team also let us know that we will have a G-Tube consult this week for potential surgery. They feel almost 100% this is the right direction for Aslan’s care and eventual discharge. They just gave us a preliminary update on his latest echo as well. Good news! Aslan’s heart function looks more normal than this last echo did.

Aslan is up to taking full feeds and his additional oxygen sensors are gone. He does spit up some of his feeds but nothing they are too concerned about yet. Aslan just has a feeding tube, a nasal cannula for oxygen and 3 lines to check his overall vitals now that he’s shed his other gear. Grateful! — Bryan (and for Melissa)

04/02/23 Update

Aslan’s now on 60ml or 2oz of Mama’s milk every 3 hrs. His vitals look good and his PICC line was removed today. He is getting all his feeds and meds by his feeding tube. He has thrown up a couple times over the weekend while feeding but has kept all his meds down. One of Aslan’s nurses let us know that he’s cleared out some epic stools in the last 24hrs — some meconium which has helped with feeds she thinks. She also said Aslan’s the most stable baby in D Pod at NICU right now. That’s awesome news! I said a prayer for the other babies in NICU.

Aslan is still using 25 - 30% oxygen from his Nasal Cannula. Please pray his need for supplemental oxygen decreases. He is also swaddled a lot more and the heater on his bed is turned off. His vitals also remained stable when holding him today. A good visit!

03/31/23 Update

Aslan’s team of about 10 people met with me today for roughly an hr. It was just an update meeting to get all on the same page as far as his care and next steps. Melissa was and is still in Triage / Postpartum through at least tonight getting evaluations and testing on a dizziness issue. We decided to keep our meeting with his team anyway.

The Neurology department let us know that Aslan right cortex is thin and is experiencing interictal spikes (IEDs) — large intermittent electrophysiological events observed between seizures in patients with epilepsy — around 0 to 1 an hr for 30 seconds. IEDs are less studied, and their relationship to seizures remains unclear. Aslan left frontal cortex is experiencing seizures 0 to 5 an hr though sub level ones every so often for a minute at most. The seizures don’t take control of his body in large ways as far as they can observe.

Aslan could definitely be classified as Super-refractory meaning the seizures are both med and anesthesia resistant. Aslan continues to get Keppra, Vimpat, and Phenobarbital in high dose. He will drop the Phenobarbital in 6 - 12 months but may need a substitute drug. The team believes the seizures are happening due to the abnormal formation of his brain. His brain will continue to grow and develop neuropathways but they don’t believe it will change structurally. They will take another MRI of his developing brain in 2 - 3 years.

The Neonatologist team will focus on respiratory now that Aslan is off of his breathing tube. Aslan is free of his tube but using 30 - 40% oxygen sometimes more through a Nasal Cannula. They actually don’t know how much he is using because it doesn’t always stay in his nose because of the midline cleft lip and palate. They do have concern that Aslan has difficultly tolerating being on his back and drops his stats (mostly BPM and Oxygen). He also exhibits a little refraction above his diaphragm which could indicate increased effort when breathing on his back. The plan is to have an ENT Dr take imaging of Aslan’s face and airway passages to see if there is an obstruction to Aslan’s breathing when on his back. Aslan also drops his breathing and oxygen stats when fussy or upset more than other babies in their observations. The team says they should drop by about 10 and Aslan’s drop about 15 - 40 — they are watching this. They are also checking his muscle tone frequently because muscle tone can affect overall breathing. They think his muscle tone is a little abnormal compared with others. Respiratory observation will take roughly weeks at the NICU we are told and Aslan may come home with oxygen support of some kind. Please pray that he lives day to day on room air alone.

The Neonatologist team will work on feeding as well. They are currently feeding Aslan through a feeding tube by mouth to his stomach because of his cleft. They do feel that orally feeding Aslan with a specialty bottle would be unsafe right now due to aspirate risk (the accidental breathing in of food or fluid into the lungs). The concern is that his severe clef would cause difficulty with suck, breathe, swallow coordination. They are willing to try with a little bit of milk but are way more comfortable continuing to feed him by feeding tube and eventually are thinking about a G-Tube for feeds at home. They said it is a high likelihood that he will need a G-Tube. They are concerned feeding will be a long term struggle for Aslan. Please pray that it isn’t.

The Rapid Exome genetic test came back today with ‘variant of unknown significance in a gene’ (not a diagnosis). The full test comes back by April 7 and may provide a diagnosis. We will meet Monday with genetics.

Melissa and I got to hold Aslan skin to skin today. Holding him is definitely always a major highlight of our days at NICU. We of course can’t wait to bring our boy home and continue to pray for so many different miracles for Aslan. His guesstimated timeline for discharge looks like weeks to month(s) from today. Thank you for believing with us and praying. — Bryan (and for Melissa)

03/30/2023 Update 2

Aslan’s extubation happened at 6pm. He did great and is breathing on his own. His vitals looks great. His regular care took place at 8pm. He’s 8.55lbs without all the gear. They will monitor him closely through the night. — Bryan (and for Melissa)

03/30/2023 Update

Good afternoon. A big day for Aslan. The EEG came off around 11:15am this morning and we can see his hair again. His face looks a little puffy from the meds but all his vitals continue to look good. He is 8.36lbs as of two days ago and gaining weight. They plan to continue to increase his feeds at 2pm to 38ml every 3hrs. He’s 16 days old today.

His blood gas for oxygenation came back perfect earlier this am and the team is moving toward extubation by the end of the day. Maybe 8pm or so. They are prepping him now by giving him a steroid and caffeine to see how he does. His eyes are open often and I think he can’t wait to get the tube out. Go Aslan!

Aslan is breathing over his ventilator well which is set at 19bpm, so about as low as supplementally that they can go. If things go as planned they will perform his airway extubation tonight and maybe give him a little supplemental oxygen after it comes out. Please continue to pray for that. The team would only re-intubate Aslan if things changed after his extubation as far as his ability to breathe well on his own.

We still don’t have all the answers from our Neurologist and Epilepsy teams. They continue to discuss possible meds changes, amount of seizures and what it all means for Aslan. We have a meeting tomorrow at 1pm with our entire team of Drs and Specialists to all get on the same page.

Yesterday Melissa developed preeclampsia and was transferred to Triage through the ER here. Her blood pressure was elevated 150 - 160 and she is normally around 110. Preeclampsia carries a risk of seizures and stroke and can happen after birth. We are so grateful she caught this early as her symptoms were dizziness, trouble with balance, and she would say more like walking through water. Normally a headache is a major sign of preeclampsia which she didn’t have. We thought she was dehydrated. Praise God she’s ok!

Melissa’s been on a steady IV drip, magnesium, etc. overnight and will be continuing throughout today. She will most likely be in Triage throughout tonight and into tomorrow morning. Her blood pressure has come back down to about 130 and the nurses feel she is out of danger. However they will be monitoring her. Her nurses have been excellent!

Her condition does put her about a block and a half away (a long walk away) from Aslan’s room in another section of the hospital. I am and will be going over sky bridges and long hallways to she her. She is resting now and is feeling better though. Thank you all for praying! — Bryan (and for Melissa)

03/29/2023 Update

Good morning. Aslan’s seizure status remains stable on his current meds. Neurology says that he is roughly in a similar place as when he came off his Ketamine drip. They said that Aslan had maybe 5 - 6 seizures overnight and they were shorter events. They are speaking with the sub specialist Epilepsy Drs to determine whether or not they will adjust his meds yet today. We are told his EEG will come off likely by the end of the day or definitely tomorrow. They will move towards moving to Aslan’s next steps with respiratory maybe tomorrow.

Rounds (Aslan’s Drs) came to talk to us about Aslan’s care. His echo came back with mild to moderate decrease in heart function - slightly improved. Praise God! His blood pressure looks great as well. They will do another heart echo in 1 week to follow up.

Aslan’s electrolytes look normal. He is going up to 28ml about 1 oz in Mama’s milk feeds every 3 hrs. His IV keeps being pulled back as his feeds increase. His pees and stools are normal range for baby.

Aslan is holding steady on his ventilator without a lot of support. They will do a blood gas tomorrow to see how well his body is oxygenating. He has had no major events. So again Neurology and the Epilepsy Drs will meet today about any final seizure action. Then they will relay that info to Aslan’s Drs and discussion will be the extubation of his tube. Aslan is now at 20 bpm (breaths per minute) on the ventilator, down from 35 bpm in preparation for eventual airway extubation. He is breathing on his own well over that amount. — Bryan (and for Melissa)

03/28/2023 Update

Aslan had a good day with us. The Cardiologist came in at 10am and there’s nothing to report right now for his latest echo. A group of 4 Neurologists came in early in the day to access his muscle tone, look at his eyes, etc. They increased his Keppra, Vinpat, and Fenobarbartoyl to adjust for his growing weight. Aslan is now taking 19ml of Mama’s milk every 3 hrs at 8am, 11am, 2pm, 5pm, etc. As long as he keeps tolerating feeds the amounts will keep increasing to eventually take him off of his IV fluids.

The EEG will go on overnight and we will have a big day tomorrow I think as far as further answers regarding his seizure status. The team is focused at controlling and eliminating Aslan’s seizures this week because seizures can also potentially affect his breathing and/or heart. This is another reason they have him intubated beside the sedative effects meds can have on bodily function.

Aslan is moving his eyes side to side and they are looking more balanced. He is opening his eyes on and off throughout the day and exploring his world a little. He likes to hold his thumbs between his index and middle fingers. He’s moving his limbs more and grabs at his intubation tube more. Good signs.

Levi and William got to meet Aslan for the first time at NICU today. They did great! We captured our first photos as a family of 5. Mama got to hold Aslan for over an hr again. A good day! — Bryan (and for Melissa)

03/28/2023 Update (disclaimer: I wrote this from 12-2 AM and I was tired!😅)

Hi everybody, Melissa here. I’m here again at the hospital spending the night so I could see Aslan and hold him again for the 3rd time. I came home for dinner to see Levi and William who are doing great, and then I saw them off to bed and came back to the hospital by 9 PM.

I wanted to give you all an update about my 2nd time holding Aslan but first I’ll tell about the first time. So the first time he had the wires everywhere and his head still wrapped with the EEG. Prior to getting held by me, Aslan was making more jerking movements and also at the same time looking a little lifeless. The first time I held him he felt like a tiny warm body but a lifeless feel because he was totally limp. So as much as I enjoyed my first hold, it was a huge reality check and it awakened a beast inside of me to care for him, to touch him, only to have to give my little limp baby back 45 min later, not knowing anything about what the future holds. I cried a lot that night and the next couple days & went to be home with my other 2 boys that I could touch.

I knew that I wanted to be there to hold Aslan as he was coming off the Ketamine drip that had made him go in the coma so if he gained consciousness that his first thoughts or experiences would be of being held by his mama. I am so glad to say that even in this crazy situation God worked it out that my baby would wake up for the first time in days, and maybe for the first time ever without struggling through a seizure, in my arms. I held him for 2 hours this time, skin to skin, and I believe it helped to settle his brain for him to have love. I am so thankful that he happened to go off the Ketamine during a time I could be there. It wasn’t in the middle of the night, for instance. Also he wasn’t lifeless. The Ketamine took 30 min to exit so I knew I was getting the real Aslan during that 2 hours. His face was peaceful, his skin changed to a smooth color instead of red and blotchy, and the bandages and wires on his head were gone.

Every day he has opened his eyes just a little more. I’ve been able to ask more of the nurses (like can you swaddle him instead of him laying there in a diaper?) and I feel more like his Mama. He moves his little hands to his mouth and does some stretches. Bryan has seen him follow his finger with his eyes. All these things are pointing to no seizures, at least none that we can see. When Jesus cast the deaf and dumb spirit out of the little boy having seizures in the Bible Jesus made a remark saying “IF I can heal him?” He was displeased at the lack of faith. I know we have 2 more days before we find out from the EEG and the Neurology team seeing his data from the EEG scans if Aslan has been completely healed of seizures. I know he’s missing a large chunk of brain. Neurosurgeon has already said the part that he’s missing isn’t even used by infants and that he could develop normally for the first 2 years. Bryan and I want to believe with no “Ifs” that God is healing our son completely. I don’t want my “if” to get in the way and cause unbelief. Especially if this supernatural belief is the only way for healing. Sometimes healing is progressive, sequential and natural with God kicking things in the right direction. Either way, the phenomenal drs here at Vanderbilt are debating rigorously about how to help him. He is a very unique case. I found out tonight that they pair two babies to each nurse and one is an easy baby and the other is a hard baby. Ours is the hard baby. So bottom line is, there isn’t 100% certainty with his team. Please continue to pray for his team. The best way forward is a supernatural one, and a belief in God.

Lastly I want to say that since we found out that there was possible massive problems with Aslan from those early ultrasounds the professionals have been treating me like a worst case scenario. Indeed, it was worse than they thought from any of the ultrasounds, EXCEPT for some very significant findings: his head and his fluid was growing at twice the rate it should, we started praying and the head is at a normal size, the fluid is draining. Drs said that normally doesn’t happen. His body could have been majorly affected because the pituitary gland is right where the other deformities in his nose are. It is fine. They thought they saw finger length differences in ultrasound but his hands are fine. The seizures which may have been lasting for days or weeks were completely stopped by this ketamine, and though we can’t see the EEG, everyone is pleased that he hasn’t shown a major seizure event and that he is getting more alert in the last day and a half. His eyes that had a more deformed kind of look to them even are starting to look more normal. There is no Trisomy (as Bryan just mentioned) like genetics thought possible with the way Aslan looks, which is great because apparently it can be pretty deadly. We are starting to hear more hope in the voices of the Vanderbilt staff. For a minute there I didn’t know if Aslan would even make it home. But God got my attention, and my faith is now centered, and I am seeing physical changes in the last 2 days to make me very encouraged. I know the Drs and nurses and other staff have saved Aslan’s life a few times over (they recommended early c-section where they found he had a knot in his umbilical cord, they saw a TINY seizure right after birth and when they looked into it found he was in a constant state of seizures and then found the right medications to combat it even though those meds are barely used in a NICU, got him on a ventilator so he would stay breathing, etc.)

Because prayer works, and God wants to give us the Holy Spirit more than anything, and some spiritual things (demons) can only come out through prayer and fasting, then this belief in God is really the only logical choice, otherwise I’m not being realistic about what the Bible actually says about what God can do, wants to do, and is doing currently. In the context of my fallibility, I’m telling you all I heard from God that God wants to heal Aslan. So believe with us. Believe for us as you have. Ask God to show us what he is doing so we can pray for that. And let us ask with believing hearts.

Love to you all. Thank you for the messages, we read all of them! It is so amazing to feel the support. Also thank you to those who have given us financial support. We have this month covered, and it has been quite a relief during this time where we are buying meals left and right, and have no idea what is happening day to day or where I’ll wind up sleeping. Speaking of sleep, I should. Pray that this sinus infection I have goes away, that my dizziness will improve so I can walk with ease and not need the wheelchair as much to get around this crazy big hospital, that Bryan and I will both recover as we’ve been going non-stop and that William and Levi will have a great day Tuesday meeting Aslan. —Melissa (and for Bryan)

03/27/2023 Update

Good afternoon. Aslan Judah Raphael is 13 days old today. The front desk printed off new wrist bands for us this morning. It’s a constant reminder for us that our son Aslan is at NICU but our original bands were wearing out. The new ones have his name printed on them so that’s nice.

A team of 3 neurologists assessed Aslan this morning and will wait another day before hooking him up to his EEG monitor. Our sons Levi and William are visiting tomorrow for the first time and Neurology is going to wait until after they leave. Maybe Tuesday night or Wednesday morning they will begin to watch for any remaining sub level seizures and adjust meds if needed. Overall Neurology feels Aslan is stable on his current meds, opening his eyes a fair amount and his vitals have looked good. So it is not urgent to begin monitoring him again and that gives us another day to hold him and let him rest from that additional head gear.

Aslan has been tolerating his 4ml feeds every 3 hrs and his bowels are awake and transitioning from meconium. They will update his feeds to 8ml starting tomorrow. His electrolytes look great.

Neurosurgery assessed Aslan’s head size and did a follow up ultrasound on his Ventriculomegaly yesterday. Everything remains stable and they plan to follow up with another ultrasound in 1 month. That’s good news.

Genetics testing came back from the microarray a few days ago as I mentioned in a previous update. I confirmed today that basically the test shows that Aslan doesn’t have a Trisomy syndrome like Downs for example. We have our Exome test coming yet to look for more unique or specific conditions — disease, syndrome or disorders. These words are sort of interchangeable sometimes in discussion based on who you talk to.

Aslan’s situation is very unique. They don’t have a lot of case studies to compare him with. His brain imaging shows Lissencephaly, Ventriculomegaly and he also has the mid-line cleft / pallet. His drive to breathe looks good. The team can only make educated guesses at how he will function developmentally based on his brain imaging. It’s a spectrum. All this means we will have another few weeks to months in NICU with him seeing what he can actually do. Aslan’s breathing tube will come out after seizures are assessed again just in case other seizure meds with sedation side effects are needed. Then the next step after that will be feeding and to determine his drive to suck on a bottle or not (assess suck, swallow, breathe coordination) — speech therapy will come and assess him eventually. Thank you for continuing to pray! — Bryan (and for Melissa)

03/26/2023 Update

Aslan’s off of Ketamine and we are starting to see his eyes more. We will get to hold him a little more today. He will be EEG free until maybe later tonight or tomorrow morning. The Neurology team will then reassess where he is as far as his seizure burden. His vitals all look good now and tomorrow will start another big week. Our head Neurologist will change for the coming week when they reassess where we are with Aslan. Here’s a few pictures from this morning. Thanks for your continued prayers! — Bryan (and for Melissa)

03/25/2023 Update

Today is the day we get to see our little Aslan wake up.

Now faith is the assurance (title deed, confirmation) of things hoped for (divinely guaranteed), and the evidence of things not seen [the conviction of their reality — faith comprehends as fact what cannot be experienced by the physical senses]. Hebrews 11:1 AMP

Good morning. Thank you all for praying for Aslan. Aslan should be off his Ketamine drip today by 2:15pm this afternoon. He’s been steadily coming off of Ketamine 3.0mg per kg weight since 3:00am this morning. He currently has 1.0mg per kg weight as of 10:15am, he will have 0.5mg per kg weight at 12:15pm and then 0mg per kg weight at 2:15pm. None of his meds otherwise will change today. He is still intubated.

We are told by Neurology that his EEG head gear will come off today to give Aslan a break. He will get a head bath and then the plan is to re-evaluate Sunday or Monday with the EEG. He will not be going back on Ketamine. So today we will get to see his hair again! Neurology and our daytime nurse let us know that we will get to hold him again today. Aslan is also taking a small amount of regular feedings from Mama via his feeding tube — 4mg every so often. The Neuro team will let us know what, if any, seizure activity they see on his EEG until it comes off, but they need to give him a full day to really evaluate so we won’t get a fuller understanding until later Monday after the EEG goes back on and they have a period of time to monitor. If you are praying you can continue to pray for consciousness without seizures over the next 2 days as he comes out of this medically induced coma. You can also pray for his feelings and needs to be met as he finally gets to be touched by Mama and Papa tonight. Babies are supposed to be held — we want Aslan to experience as much love through physical touch as he can handle. You can also pray that I (Melissa) don’t freak out at each little movement or twitch he has. We know relatively little about seizures and I don’t want to be making stuff up in my mind as he comes off the meds.

Aslan’s heart echo came back today unchanged from before. His vitals are reassuring so the cardiologists will take another echo in a couple days. They suppose the moderate decrease in heart function is due to inflammation from meds. They would give him something for his heart if it becomes a problem but believe it will likely resolve over time. They are not worried about his heart at this time. They are just watching him closely for now.

Aslan’s electrolytes are normal today. They will likely increase his feed as his bowels wake up more and more. His first round of genetic testing called the microarray came back NORMAL today. No missing or added books in Aslan’s DNA. We are stilling waiting on Aslan’s Exome genetic tests to see if there are any missing or added words within his DNA books so to speak. Exome looks for sections responsible for anything that gets built in Aslan’s body. We will know in another week or so.

I got to hold Aslan last night for an hour around 11pm - 12am for the first time. It took a team of 3 nurses to transfer him over to me with all his gear. Such a wonderful gift! The NICU team does such great work here at Vandy.

Among other things I let Aslan know that he is my beloved son, chosen and marked by my love, the delight of my life. I told him that he has what it takes, that he is enough, that he is a good son, and that I am proud of him. We continue to let Aslan know he is here on purpose, that he is wanted by our family, that he has a home with us. We let him know that he has two brothers Levi and William and that he is so loved by us all. We talk to him about Jesus a lot. We tell him so many people are praying for him and love him. We pray for him continuously. We sang to him a little last night and played Worship music in his room for hours. I didn’t want to give him back. So grateful! — Bryan (and for Melissa)

03/24/2023 Update

Good morning. Aslan is 10 days old. Today we are in another wait and see period. Neurology came in to let us know they are still seeing some seizure activity with Aslan though it is more spread out then before. He also has a rhythm that looks pre-seizure but it is not at a level that would classify as a seizure. They let us know that they will leave his Ketamine drip right now it’s at 3.0mg until 12-1 am and then ween tomorrow morning and take off his EEG for the rest of the weekend. They will then adjust his Keppra, Vinpat, and Fenobarbartoyl to get him to wake up and take him off the ventilator so he can breathe on his own. This is likely the first time he will have had any consciousness, at least for a length of time. The Drs think he may have been seizing continually in the womb. They will then re-evaluate Aslan maybe Monday with the EEG again. Aslan will also get his follow up heart echo today. Please be praying for no seizures, new pathways / connections in his brain, and that he would wake up happy.

There are 3 outcomes tomorrow: sudden change, gradual change, no change. Once off the Ketamine we would like to see no change in seizures since they are at zero right now. Good news was that it took less than half as much Ketamine to get him to no seizures today.

We are told we can hold him again today at some point and when the EEG comes off tomorrow that will be even easier. Melissa had a lot to process after the first opportunity to hold him the other night so be praying for her. Aslan is chilling on his tummy right now.

One of the hospital Chaplins stopped by today to talk with us about how we’re holding up. God definitely is moving things around here because it was a friend we’ve known for years Brian Goodwin. They lived next to one of my best friends for years also. We’ve attended a Church in the past with him and his wife. He said he rock, paper, scissored with a colleague on another floor to come visit us. God is with his people and is faithful in every season or difficult trial!

So we wait, we hope and believe God works all things together for the good. — Bryan (and for Melissa)

03/23/2023 Update 2

Good afternoon. A quick update from Neurology. Our team let us know that they have seen a 90% improvement over where we were with Aslan before the Ketamine drip. There is one place in Aslan’s brain that is continuing to show pre-seizure and seizure activity toward the left front a few times every hr. Some of the activity we are told happens for seconds while others last around 1 minute. Their plan is to up Aslan’s Ketamine drip to a place where his seizures stop and leave it there until the morning. They will then begin weening Aslan off his Ketamine drip completely by late afternoon or so tomorrow for good. They plan to manage any other symptoms that may be evident through anti-seizure meds and Aslan can wake up more. Hopefully his seizures will be gone though. The team have also concluded that the EEG is producing artifacts that aren’t seizures and they don’t believe they are actually Aslan’s at this time. The extra leads on Aslan’s brain helped the Neurology team rule some of the EEG waveforms / artifacts out — it’s not an exact science. — Bryan (and for Melissa)

03/23/2023 Update

Good morning. We spent the day yesterday watching Aslan be weened of his Ketamine drip. 0.5mg per kg of his weight every hr or so. At around 10pm last night a staff of 4 nurses helped transfer Aslan from his bed where he has been sedated into his Mama’s arms for the first time. Melissa was able to hold Aslan for about 45min before her arm started falling asleep. It was a sacred moment to see him in such a fragile state with his Mama. Wonder in the midst of it all — both the joy and grief…hope for more normal days ahead. It was very hard for Melissa to give him back.

Thankfully we were able to stay in an overnight room last night at the hospital and when we left Aslan’s room around 1pm he was still seizure free on about 1.0mg per kg weight of Ketamine down from 6.0mg per kg weight of Ketamine. This morning the seizures are back though and we are told they started at 2am. We knew that was a possibility with him but it still feels pretty heavy to digest. When I walked in Aslan’s room this morning the nurse let me know that after coming completely off the Ketamine drip the seizures re-emerged on his EEG (picture below.) They placed Aslan back on a drip of 0.5mg per kg weight and shortly after upped his dose to 1.0mg per kg weight while they wait for the main Neurology team monitoring him to check back with us.

Rounds (when our Drs come around in the morning) came in to update us a few moments ago and let us know that Neurology is working at getting another perspective on Aslan’s brain activity. Aslan’s brain has abnormal formation compared to a normal brain. Our team said that means Aslan’s baseline brain activity looks different than typical to begin with. Neurology will look at and analyze the bigger picture of Aslan’s EEG to determine what are in fact still seizures versus his normal baseline brain activity.

Neurology came in at 11am. They can’t say for sure that the frequency they are seeing is always seizures. They have said that since coming down to 2.0mg per kg of Aslan’s weight and below they have seen 1 to 6 seizures an hr. They are going to have a tech put another 5 to 7 leads on Aslan’s brain to see if they can get a clearer picture on an EEG pattern that’s emerged since weening off the Ketamine. They don’t know what it is. They don’t want to just jump back on increasing Ketamine and meds until they have a clearer understanding.

Aslan’s electrolytes look better today but his calcium has been a little low — they are working at adjusting that level. They will try to reintroduce feeding breast milk today as his gut wakes up from the anesthesia at 4mg per feeding. They will also up his nutrition through his PICC line. His heart EKG has looked stable over 24hrs and labs have been coming back good to date on possible reasons for yesterdays moderate decrease in heart function. The cardiologists are content to get another echo tomorrow on his heart because everything looks good to wait.

We will also be able to start holding Aslan more often — at least once a day according to our Neonatologist this morning. We are grateful! — Bryan (and for Melissa)

03/22/2023 Update

Aslan got a catheter to help him drain his fluids yesterday and he was able to pee everything out over several hrs! He no longer looks puffy from retaining fluids. The NICU nurses also helped get Aslan’s electrolytes more in balance over night. His potassium level was high over the day yesterday and has come down to more normal range today. We are told he’s headed in the right direction. The high potassium level prompted the team here to take another EKG of his heart and monitor him closely overnight and gave him meds to protect his heart while he continued to pee everything out. They are also working on getting his sodium levels up. Keeping his levels right is more of a long term process as far as normalization of potassium, etc. They are concerned though that his pituitary gland might be causing the electrolyte imbalance so the team will follow up with more testing around pituitary function. They believe Aslan’s fluid retention was related to the anesthetic though.

We are also told the EKG came back with a moderate decrease in function of his heart today so we will be speaking with a cardiologist Dr today who will examine him more closely. They are most concerned about potential inflammation in the body affecting his heart but it could also be several other possibilities causing this.

Today is the day they are starting to ween Aslan off of his Katemine drip. The plan is to take him down off of it gradually over time and watch for potential seizure activity between each ween. He started at 6mg per Aslan’s kg weight without seizures for 24hrs (Thank you for your prayers!), then 5.5mg per Aslan’s kg weight starting at 4am when his IV in his arm for the Ketamine went bad which can happen. So an ultrasound nurse came in and put a new IV near his ankle this morning to continue the 5.5mg per Aslan’s kg weight. Neurology likes what they see so they have now come down to 5mg per Aslan’s kg weight. So far so good with Aslan’s Ketamine ween. It will be every hr or so by 0.5mg. If seizures come back we are told Neurology may try a 4th med to chase it and control it. If the seizures really come back then they will return the Ketamine to a level where they don’t see seizures and leave it there for 24hrs again. We can’t leave Aslan on an anesthetic though so at some point we will find out if he has Epilepsy that will or won’t be helped by meds.

We do have a plan or goal to hopefully hold Aslan today. He will still be sedated but hopefully we will be able to do that at some point with the assistance of a respiratory nurse. Please pray for no seizures, his electrolyte regulatory systems, and his heart function! — Bryan (and for Melissa)

03/21/2023 Update

I talked with Neurosurgery last night on the phone. Aslan has Ventriculomegaly - a condition in which the brain ventricles, or fluid-filled cavities, are enlarged due to build up of cerebrospinal fluid (CSF), 46mm RV and 26mm LV - he also has a 3rd and 4th ventricle draining system in place though a little abnormal looking. Normal ventricle size is 6mm-10mm. Neurosurgery is waiting to see if Aslan’s Ventriculomegaly develops into Hydrocephalus or puts pressure on his brain. Right now it is not so Neurosurgery will not be putting anything in to assist draining fluid at this time. They don’t think his brain would function better with a procedure either. A shunt is also a lifetime deal so they would not operate unless necessary and Aslan’s brain doesn’t need urgent surgery or maybe none. They also would not operate on a baby at this young age unless urgent. They will continue to monitor his Ventriculomegaly instead to see if pressure develops. Epilepsy surgery can also be done later in life if his seizures continue to be a problem. Neurosurgery prefers to give Aslan a chance to thrive as is.

Aslan is starting to hold on to a higher level of potassium in his body overnight and looks a little puffy today. He needs to pee. The meds are interfering with his kidneys some. He’s had two dry diapers in a row. They ran a EKG on his heart early this morning and it came back NORMAL but they are concerned about the higher potassium levels (a side effects from all the meds he is on) eventually creating arymthmic conditions. Also his electrolytes are a little out of balance so they are taking Aslan off Mama’s milk today and dialing back fluids until they get his electrolytes back in more normal ranges. It can basically all lead to problems.

All of this means they are talking with Neurology now to see what effect if any the Ketamine drip has had on his seizures. It may mean that they dial the Ketamine back sooner then planned or change their plan with meds. Aslan feels a bit like an experiment and I hate it for him. He is very unique in his brain formation and everyone is trying to figure him out. We need a breakthrough with his seizures today. Please continue to pray!

The verse of the day in my phone is this one so I’m putting it here. “For You formed my innermost parts; You knit me [together] in my mother’s womb. I will give thanks and praise to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well.” Psalms 139:13-14 AMP

The EEG will be monitoring his brain again today for seizure activity and I honestly can’t wait for it to come off. Hopefully the Ketamine has had some effect. We will know more at some point today when we get our update.

Update! Neurology just came in and let us know that Aslan hasn’t had a seizure in 12hrs! Praise God!

They are going to keep him on his Ketamine drip until 2:30am tomorrow morning early hrs. At that time they will begin weening him off the Ketamine while continuing to monitor him with EEG for brain activity. Neurology also said Aslan is not the first case with med resistant Epilepsy at NICU or PICU. They seemed pretty upbeat. They did say that if Aslan’s seizures resurface tomorrow morning they would use Ketamine again for 48 hrs. Ugh.

We will also be speaking with a Palliative Care team today to help us with the overall picture of Aslan’s care. — Bryan (and for Melissa)

03/20/2023 Update

Good morning! Melissa and I had a good night with Aslan last night praying for him and singing to him in his room. We played a list of Worship songs and he opened both of his eyes during a song called God of Miracles by Chris McClarney even on a little Ketamine (an anesthetic).

We had forward progress today! Neurology stopped in this morning and gave us an update on Aslan’s brain. His seizures used to be continuous they said, so non stop. He has had them all day every day since he was born and possibly many weeks in the womb. After 4.5mg per kg of Aslan’s weight in Ketamine along with doses of Vimpat, Phenobarbital, Keppra (anti-seizure drugs) his seizures decreased for the first time a few seizures every hr. Thank you for those that prayed for this, it is forward progress.  Now we just wait for the team to increase to a high dose of 6mg per kg of Aslan’s weight by 4:20pm today and leave him at that dose for 24hrs in hopes that they can stop all together. They are cautiously optimistic that they will see improvement for him but can’t make any guarantees that they will stop completely. We are believing that God will stop them completely in spite of the neurologist trying to not get our hopes up. We will re-evaluate Aslan’s care tomorrow. Neurology did let us know that there is a marathon kind of aspect with Aslan.

We need miracles for Aslan for sure. Neurology said they are expecting some pretty profound developmental delays with Aslan after his seizures stop. Still Melissa and I are expecting developmental miracles and believe our prayers are of great effect for Aslan’s life. As of now the seizures are coming from 5 areas of his brain — left front, right front, left central, right central and right back. Aslan will have increasingly more conscious awareness for development if his seizures stop altogether or are controlled to be less frequent. Neurology also believes we will have some form of meds to control seizures even when we eventually go home.

Aslan’s brain developed abnormally in the womb with larger ventricles and less folds in the brain. The ventricles appear to be draining though so Neurosurgery doesn’t really feel or know that draining Aslan’s ventricles would be to his benefit. They believe they might just fill with fluid again anyway. There is no pressure on his brain to relieve him of which is the primary reason for doing Hydrocephalus surgery. So at this point there is no brain surgery needed, an answer to prayer!

Genetics is also trying to track down some cause for Aslan’s condition. A syndrome hasn’t been pinpointed yet. There may be a change in his genes but nothing is known as of now. Genetics is ordering another specific test for babies who have epilepsy and seizures. We do know that Aslan’s first CMA test will come back 10 days to 2 weeks old and the other genetic testing in weeks to months. TBD.

Aslan is sleeping and receiving a steady drip of Ketamine this afternoon. We are taking a much needed break while our little Lion is sleeping. Praying his seizures stop today!

Genetics just called and asked if we want to run an exome sequencing rapid test — results in 7 days or so. The test would basically focus on the parts of the exome that would be responsible for making everything in the body and check for genetic abnormalities. Aslan, Melissa and I will likely give samples for this in the morning. Hopefully it will give us a genetic diagnosis that would lead to better care and management. — Bryan (and for Melissa)

3/19/2023 Update

Good news and tough news today. Aslan’s blood work came back normal for all of his pituitary function, thyroid, adrenal…blood work looks good so his pituitary works and is visible from the MRI. Praise God! We are so thankful for your prayers. We also were able to stay in a sleep room here at the hospital last night in Family Room 1 for the 2nd time, 2 nights in a row. We have our name in for a room again tonight but are told we are not the highest priority train wreck here in NICU — the receptionist actually said that…in a kind way.

Aslan’s team of Drs rounded with us this morning around 9am and spoke at length about his seizures. Unfortunately they are still happening even with 3 regular anti-seizure meds at high levels and some Ketamine (an aesthetic) they are using now to try and reset his brain but not typically used with babies. They are hopeful that if they are able to achieve a reset of Aslan’s brain with Ketamine, his other 3 meds may work better to control or stop his seizures. The big news of the day was that Aslan would need to be intubated with a breathing tube so that higher levels of Ketamine could be used. The risk is that his ability to breathe on his own could be compromised as they up his dose. They also said that can’t make any guarantees it will work for Aslan. Another risk is Ketamine can cause his vocal chords to seize making it difficult for the breathing tube to come out among other things. But if we didn’t try to stop them now they also said Aslan would have difficulty with seizures and epilepsy long term. They believe he has been having seizures in Mama’s womb for a while. Aslan’s Neurology team believes his seizures are an established behavior of his brain making it more difficult to reset in hopes of better more normal development. Stopping his seizures will allow Aslan more capacity to grow and do the other developmental things baby Aslan needs to be doing now. After discussion we agreed to move ahead with more Ketamine and Aslan was intubated today.

After our meeting Melissa took a break to go home and see Levi and William for a bit. Hugs all around! She is resting today and still recovering from her C-Section. But she will be back with me here at Vandy Children’s Hospital tonight if we get a room or in the morning if not.

Aslan’s brothers Levi and William are so excited about baby brother! Levi went on and on about how baby is growing and getting milk from Mama at the hospital. We told him it would be a while before baby came home. My boys are so happy at home. It’s difficult to pretend in situations like this but we put on a happy face.

Aslan is now intubated and did great! We are now monitoring him as they continue to increase his level of Ketamine. It will be a gradual process over the course of the day… — Bryan (and for Melissa)

3/18/2023 Update

Good morning! Aslan is growing a little and weighs a little over 7bs now. He has a PICC line for IV and meds now and his umbilical line will come out today. He is also getting regular supply from Mama every 3 hrs. He had a little adventure last night with getting an additional IV placement for the contrast dye needed for the MRI. They had to call a special ultrasound nurse who uses ultrasound to find a good vain for the needle insertion. It took her 2 attempts and about a half an hr.

His MRI happen around 9pm last night. I walked Aslan down with the nurses to the 1st floor from the 4th floor NICU but couldn’t go in with them. The team told me that he did great though and MRI staff did take about a 1 hr imaging of his brain. The results will come back later today likely. I am told radiology can be slower.

Aslan was back in his room just after 10pm sometime last night. The overnight nursing staff have hooked him back up to EKG head monitoring for sub level brain activity as they are still trying to get a better understanding of his seizures. It’s like looking at classical music waveforms — the kind Aslan’s brain makes.

Melissa and I spent the night at NICU in an overnight room and have put in our name again for a room tonight. We will know by 5pm if we will have a room here for later today. You have to apply every day for a limited amount of shared rooms here at NICU. Check out is 9am every morning. The staff review all the applicants circumstances and give them out based on priority needs of families and kiddos here.

The team of Aslan’s Drs came in today to talk about his MRI. The MRI shows that Aslan’s brain is abnormally developed. His pituitary gland is there but abnormal. There are also not as many folds in his brain as they would expect and the left side doesn’t have any as of now because of the Hydrocephalus of his left ventricle 46mm — the tissue is all around it though with no pressure but also no folds. His brain is also asymmetrical because of the size of his left ventricle. They will try to determine if Neurosurgery will be of any benefit to his brain in the next while. Neurology let us know that Aslan’s seizures are more frequent and plan to introduce Ketamine today to reset his brain activity so that the 3 meds he’s on will take greater effect. Please pray for Aslan’s sub level seizures to stop. — Bryan (and for Melissa)

3/17/2023 Update

Aslan’s echo on his heart was completed yesterday. The team is happy with his echo and structurally he has a very normal looking heart!

Aslan had been stable for more than 12hrs with heart rate, oxygen saturation and breathing stats when the Drs gathered with us this morning. Those stats have remained stable all day!

Unfortunately Aslan’s machine for monitoring his sub level seizures broke down yesterday and the IT team had to replace it overnight! A new monitor is now in his room and it’s all remotely controlled usually in realtime so that meant Aslan’s surveillance for sub level seizure activity was delayed and spotty over the course of the day and last night. It was later confirmed that Aslan is still having sub level seizures!

The Neurology team is using 3 meds now to control or calm them down and 2 emergency use meds. They started today by increasing the level of 1 med he’s on with a plan to monitor him for the next several days until they stopped. The meds make Aslan very sleepy but responsive to touch.

The plan changed around noon today and Neurology has decided to go ahead with an MRI for around 7pm today. Basically instead of remaining in a wait and see or stuck place with meds they hope to discover the different various structures in Aslan’s brain and move forward. They feel he is stable enough to take the journey to the MRI room for imaging and then back to NICU. A NICU nurse will be by Aslan’s side during the entire trip this evening in case of an emergency. The Neuro Team want more clarity between what may be actually Aslan’s regular brain wavelengths and what are sub level seizures. They need to find what the background wavelengths are that are Aslan’s normal brain signature and not the seizures, so viewing the actual structures in the brain will help them understand more and they are calling in more specialized doctors to read the data.

A few hours ago Aslan’s head monitoring came off and he has beautiful darker brown hair and a receding hair line like his Papa. Ha! Melissa cried today as she got to see his whole head and his ears today for the very first time. He enjoyed being given a sponge bath of his head and was vocal in response to being washed and prepped for his MRI. Then Melissa and I signed a few consent forms for upcoming possible surgeries (none scheduled yet) and a PICC line that was just placed for his IV and meds instead of one though his umbilical. The PICC line carries a lower risk for infection and is easier to work with overall.

Mama is beginning to get more supply (after pumping for 12 hours and getting nothing) to help him begin to grow and Aslan has been taking what Mama has to offer just great via a feeding tube through is mouth to stomach.

The team also mentioned ordering some lab work this morning for more information around his hormone levels which could help tell them more about his pituitary gland, thyroid, adrenal function. TBD. They will take a blood draw for this and send out. The Pituitary gland sits right above the nose and is in a place that could have deformities based on the rest of the deformity in the midline of his nose.

Aslan just open his eyes for the first time since birth and spent 5 minutes looking at Papa (me). We had a few moments eye to eye. So precious! He also just got hiccups from Mama milk. Sleeping again. Now on to the MRI.

Melissa’s Update

Melissa had a very rough day yesterday after getting sick and almost fainted a few times while trying to be with Aslan in the room. She’s been standing longer than she should and missing pain medication because of trouble with the timing of wheelchair transportation. She was going back and forth between 2 hospital buildings: NICU where Aslan is and her postpartum room a mile away and missing her meds because they could only be administered by her nurses that were only in that building. There is no place for Melissa to rest in Aslan’s room so it is difficult for her to be there. There is a chair for her in the room to sit but she really needs to be laying down. Praise God they put her in a family room tonight and she has a place to sleep here and Aslan’s nurse put her on bed rest. Where Melissa is going to recover is a fluid situation so please pray that the right place emerges. We only have the family room for one night and have to re-apply in the morning. Aslan’s room is also at the very back of the NICU so she has to be wheeled around to get to the bathroom and such. Now that she was discharged she isn’t going back and forth between 2 buildings to get her meds and is more likely to be stationary which will help tremendously. She’s had two days of only 2 hours of sleep so she needs the rest.

Thank you all! —Bryan and Melissa

3/16/2023 Update

Aslan Judah Raphael Lautenbach was born 8:46pm March 14, 23. 6lbs 11.5oz, 18.8 inches by C-Section. Mama (Melissa is walking around some already) and baby Aslan are at Vanderbilt Children’s Hospital recovering. Aslan unfortunately will have a long road of recovery and surgery ahead of him. We are believing for miracles for him and hope in God.

Moments after birth the team at NICU was concerned with his breathing (it was asymmetrical and labored) and he was put on an oxygen mask for an hour and almost intubated. Aslan received an ex ray for lungs / diaphragm and ultrasounds for heart, kidneys, etc within hrs of being born. All of those have come back NORMAL. His breathing is symmetrical now but is supplemented with oxygen as his saturation level was near 88 and the team wants it near 100. Aslan was vocal when born (crying and making sounds) and is doing some of those early baby things - pees and poops.

God saved his life once already by moving up our C-Section a day because the umbilical chord was in a knot when he was delivered with very little to no ambiotic fluid left around him. He would have passed if the umbilical cord had dried which happens when there is no ambiotic fluid to hydrate the cord.

Aslan has a midline clef lip and palate meaning there is a gap in his upper lip, no bone behind his nose and a gap in his upper palate (rare) as far as cleft lip and palate go. There are reconstruction challenges but doable one step at a time. Aslan also has Hydrocephalus which is a condition in which the brain ventricles retain more spinal fluid than normal and in his case he is in a severe category with larger ventricle size. The Hydrocephalus is causing his frontal bones to be a little more open than normal but there is NO PRESSURE on his brain tissue that they can determine. Pressure on his brain can cause brain damage so we are thankful there is no pressure. His brain ventricles are larger than usual on ultrasound.

Neurology and Neurosurgery teams need to do an MRI to determine more about his brain function and anatomy at this point. However, Aslan has been having seizures, one visible the night after his birth and the rest sub level so the seizures are not shaking his body. The seizures show up on scans and have been consistent until this morning when the medicine helped stop them. His brain is currently hooked up to a monitor to watch for seizures sub level. Neurology has given Aslan 2 meds to stop seizures and 1 emergency med. They are now working on getting the dose right. He has not had a seizure though since 12:30am this morning and they need at least a 24hr period without seizure before they will move to MRI.

The seizure meds make Aslan sleepy so he’s mostly had his eyes closed for a day and a half. He also had an event last night when his breathing briefly stopped and his heart rate dropped to 30 BPM for 10 seconds. The event lasted approximately 1 minute and no one really knows why yet. He returned to excellent levels though and has been stable all day.

When Neurology is able to do the MRI they will be particularly interested in Aslan’s pituitary gland because it usually sits lower in the brain nearer the nose. Is it there? Partially there? TBD. They will look to see what else is there or missing and if Neurosurgery will be necessary. The team will also do an echo on Aslan’s heart to make sure there are no minor defects or other things unseen in the ultrasound imaging. The Genetics team is also sending out for further testing of Aslan. So basically baby Aslan has several teams: Neurology (seizures or other non surgical), Neurosurgery (potential surgical), Genetics (underlying causes or syndromes), and Craniofacial (midline cleft and palate reconstruction). A feeding tube has just been placed via Aslan’s mouth for mixing Colostrum from Mama with the other IV fluids that Aslan’s been getting for a couple days. He will progress to Mama milk hopefully soon.

Aslan is stable as of now but is definitely taking it one day at a time with his family. His mama is resting today with a little cold. Melissa and I are looking forward to the day when we can hold our baby for the first time. We know your prayers have already had much effect. Thank you all for praying and your support of our family! Aslan’s full name means Lion Praise God Has Healed.

— Bryan (and for Melissa)

If you would like to bless Bryan, Melissa and their family to cover hotel costs, extra food costs, and other costs associated with their NICU stay, you can donate here:

https://paypal.me/LautenbachNICU

3/5/2023 Update

Hi all! So our last ultrasound showed that there has been NO CHANGE to the swelling spinal fluid, meaning somehow his fluid stabilized. He is still in the severe category but the attending doctors admitted this doesn’t usually happen. Bryan and I are very optimistic that there is a God reason behind this and also a medical reason that we will find out when he’s born. It could mean that the mechanism that is usually faulty in the brain not allowing the fluid to drain has started functioning. What they don’t know and can’t see is if there is brain tissue in the swollen ventricles or if it is just fluid. There is a brain there, but we don’t know if it is functioning normally and will be normal size.

3/4/2023 Original Post

From Bryan and Melissa:

A couple months ago we found out that our baby has a diagnosis of double cleft palate and hydrocephalus (water/spinal fluid on the brain), and many of you started praying for us. We are so thankful for this prayer and are asking for total healing! We did see a substantial rate of swelling decrease and a slowed head size growth since people started praying!

The initial severity of the two conditions together have highly alarmed the Vanderbilt Fetal Medicine team. Currently one brain lobe is at 22 millimeters and the other is at 30 mm, and they both should be around 6-7mm. The doctors are preparing us for brain surgery once baby is strong enough and cleft surgeries in the months/years to follow. It is yet to be determined if baby has cleft palate from his mouth to under his nose, hearing loss related to cleft, scull fracturing and swelling, loss of cognitive function, and trouble learning to breath/suck/swallow necessitating a G-tube.

Baby is going to the NICU (Neonatal Intensive Care Unit) 15 min after birth, and doctors believe he will be there around a month. But it could be anywhere from 2 weeks to 2 months.

We are so thankful for family that will help Levi and William while Melissa is in the hospital. Melissa will have one day of recovery in a hospital room and then be in baby's NICU room sleeping in a recliner while pumping. And both Bryan and Melissa will be learning to feed baby at the hospital.

Possible needs could include: O Degree freezer for breastmilk, additional breastmilk, food beyond the hospital, hotel, mold remediation in the home, bills, childcare, and autism related medical needs. Both William and Levi received an autism diagnosis in 2022. Thankfully the boys are loving and verbal, but this adds some difficulty to bringing baby brother home.

Please look forward with us to good reports about baby, as we will be updating this post once baby is born so you all can be updated about and praying for baby's and our family's health.

Thank you!!!