Leo, Our Little Lion Man

  LEO IS GOING HOME! He was discharged this evening and Brad and Charis will be spending the night at the Airbnb before heading home to Lancaster tomorrow. We are so grateful to the doctors, nurses, therapist, and case managers at Lancaster Women's and Babies and CHOP for their compassionate and competent care for Leo. We are so grateful for every last one your prayers. We are so grateful for all the gifts you have given Brad and Charis. We are so grateful that our God is faithful yesterday, today, and tomorrow. On to the next stage of their journey!

  The doctors have put their heads together and decided that the short "events" that Leo has been having when his oxygen drops are simply normal fluctuations that many newborns have (most babies just aren't attached to a monitor, so no one worries about it). They have decided he doesn't need the oxygen monitor at all. The feeding tube was taken out again so that Brad could practice replacing it. That means for 3 hours, Leo got to experience life with no contraptions attached. Whether Leo noticed or not, Mommy and Daddy loved it! He has been able to drink about 10ml from his bottle before each feeding. His feedings are about 65ml so he's 1/6th of the way there! Leo's discharge checklist is getting shorter. -Both Charis and Brad have replaced his feeding tube and completed a feed under supervision. -Leo has continued gaining good weigh with some fortification added to the breast milk. -The nasal cannula and oxygen monitoring is no longer needed. Now he just need

  Leo drank 2ml from a bottle this morning!! The doctor told Brad and Charis to be prepared for him to be discharged in a couple days!! The educator came today and showed them how to tube feed Leo in the safety of their own home until he builds up the eating muscles enough drink all he needs by himself and the physical therapist has given them some tips and exercises to help Leo learn to lift his head. The only catch is that he is still requiring the tiniest bit of oxygen on and off. So! Pray that Leo continues to embrace the bottle and hopefully nursing too. Pray that Leo keeps gaining good weight. Pray that Leo can maintain good oxygen saturation all on his own. He's so close! The feeding tube was changed today so Brad snapped some beautiful photos!

 Some people have told me they want more pictures ;) Also, since being transferred out of the NICU, there is no camera on Leo for grandparents and aunts and uncles to check, so family is going through withdrawal.  But, along with the pictures a small update from today!  As I said before, Leo is out of the NICU! I don't think we've said that on here yet. He is in a pediatric room, being watched by a nurse. He is working on breathing and sucking. He was put back on oxygen today. It's only one liter (or less) though. The doctors are still expecting him to breathe on his own. He's just been through a lot and needs some help. As the nurse encouraged us, it's about how far he's come and not that he's back on oxygen.  He did SO GOOD with the pacifier today! He sucked readily and for a much longer time. He has attempted sucking at the breast but is less receptive. He's been gaining weight and still able to be fed with breastmilk. He's floppy but has been mov

  Another day of progress for Leo! Physical therapy said he was a bit less hypotonic today than Wednesday. He has been given the ok to downgrade to a lower level of care at CHOP while he builds up his breathing and eating muscles, though they haven't moved him yet to my knowledge. He was also able to attempt nursing! He was apparently receptive but didn't know exactly what to do yet. He did latch on tight and readily to the pacifier today when the speech therapist offered it. All tiny positives to rejoice in. Since he is breathing so well, the doctors have started the conversation about when he could go home. If Leo starts to progress really quickly in his ability to feed, he may stay at CHOP until he can sustain himself without the feeding tube. However, if he decides to take his time, feeding alone won't keep him in the hospital. Charis and Brad could potentially take him home with the feeding tube and continue teaching him to eat orally there. While it could still be a w

       We met with physical therapy today (March 24th). Well, she came to Leo's bedside to evaluate him and work on some things. She looked at Leo's muscle control in his limbs, neck, and face. She looked at how he picked his head up, tummy time things, and eye control. She had some observations about him and suggestions for him.      His neck muscles are rather weak. We will be working on helping him lift his head from certain positions. There are ways that Brad and I can encourage him to use those muscles. He also doesn't seem to engage well with his eyes. Like, I wouldn't say that he looks at  me, more past me. The therapist suggested swaddling him up before practicing "engaging" with him. She said that it's not normal for a baby his age to not look  at you. That was a hard thing to swallow. She also confirmed that Leo is a bit "floppy." He is hypotonic. The neurologist has told us he will most likely by hypertonic but that starts as hypotonic

 Another day of little sucks on a pacifier. Leo's back on a little bit of oxygen, but the nurses have encouraged Brad and Charis that this is not a significant setback and it's somewhat expected.  Leo updates may come a little less frequently these days. Everyday that he is seizure free and breathing on his own is a win, but waiting for him to take milk orally will take lots of patience. There is purpose in the journey, not just the destination, so please continue your prayers for peace and endurance for Brad and Charis and progress for Leo. God has used your love and care to allow them to focus on Leo. According to Charis, it seems to take all they have right now. 

He's graduated to room air! Just the feeding tube, an IV, and monitoring lines left.  Today Leo got to see a speech therapist to help him embrace the pacifier. He gave a few introductory sucks and was done. Baby steps. The nurses will keep offering it to him, so much to learn. No pressure Leo!

 Leo's so alert today! Brad said he's been cooing and coughing and sneezing and making himself known! He was even awake for a two hour stretch. He graduated from high flow nasal cannula to regular nasal cannula. Since regular nasal cannula doesn't give him any additional pressure support for breathing, he can try feeding. They are not sure if his suckling instincts are intact or not, but we'll find out soon. First attempt will probably be this afternoon. 

      Charis, again. I t doesn't feel like we have as much to say today. But at the same time, there's so   much  going on in our heads and hearts.      Leo had a good day today. He's still breathing with the oxygen. The nurse told us today that he had two episodes this morning where his oxygen saturation and heart rate dropped a bit. That felt unnerving to hear; however, the nurse wasn't worried. It happened after he got fed so she said that it's most likely some reflux. It's a normal baby response. She also was talking about how he's learning to breathe and that's going to take some time and effort. He fed well while we were there and Daddy and I both got some skin-to-skin time with him. He is less and less sedated which is fun to see. While Brad changed his diaper today he was quite awake and checking Daddy out. Other than that time, though, he spent the skin-to-skin time sleeping. Apparently newborns sleep a lot. As we left, we got to put him in one

 Leo is holding strong on high flow nasal cannula instead of the ventilator! Both Charis and Brad got to snuggle Leo today and everyone involved was much more comfortable with one less tube.  He's also filling his tummy completely with Mama's milk via a feeding tube instead of IV nutrition. We take nothing for granted!

The NICU plans to extubated Leo this afternoon!

Well... the news was not what we hoped.  The neurologist met with Brad and Charis to discuss the MRI this morning. Leo has hypoxic-ischemic encephalopathy (which we sorta knew already). It's a broad diagnosis for infants who suffer brain damage due to oxygen deprivation. There is a wide range of outcomes, but based on the MRI, Leo's injuries are extensive. He also had a bleed in the middle of his brain. His body will eventually reabsorb all of the blood, but according to Brad's understanding, the "space" will stay. This MRI is the best predictor of Leo's long term capabilities but it's not an exact science. Leo's neurons may regrow new pathways because he is so little, but there is no way to know right now.  In the long term, Leo will still be at risk for seizures and he may have issues with hypertonia. His muscles may be stiff and inflexible and it may impact his ability to eat, sit, crawl, walk... The doctor says they'll know more when Leo is 2-5

  Thank you, thank you for your prayers. God is faithful and hears the prayers of His children. Another uneventful night. Leo had a few more tremors but no seizure activity. The level of phenobarbital in Leo's blood is fairly high due the amount he needed previously to control the seizures and the fact that it is metabolized very slowly, but he hasn't received any additional doses in 48 hours. We are still waiting to see what will happen when his phenobarb level drops. The EEG is finally off in preparation for the MRI, though they will most likely need to reapply the leads afterward to watch for seizure activity when weaning the seizure med. The doctor is pleased with how well Leo is breathing. He will stay intubated and on a ventilator until after the sedation needed for the MRI this evening wears off. They are hopeful that he will be able to be weaned from the vent and extubated shortly after. His feeds have been increased to 1 oz of milk every 3 hours and he's tolerating

Charis here.  I don't know exactly where to start. I wanted to come on and give a little note about how Brad and I are doing and also to try and say "thank you" for the support we have gotten this past week. We are speechless, but I'm going to try. First off, how are we doing? It's pretty safe to say that the last week has been the longest week of our lives. Sunday, March 7th started normally and by the evening I was looking at Brad saying, "Do you think this is it? Is this actually happening? What the heck?" Labor and delivery is it's own story. One of the most amazing experiences of my life. And it brought us our little lion man. But we did not know that anything was wrong until, literally, the moment Leo was born. That's when it all started. It's been exhausting and overwhelming (obviously). It's been a rollercoaster because you never know when the next piece of news will come and whether it will be good or bad. It's been a new thi

Today was another good day for Leo. The neurologist finally spoke with Brad and Charis this evening and reassured them that the episode from last night was not a seizure based on the EEG reading. We are so thankful! The MRI has finally been scheduled for tomorrow evening. The EEG leads will need to be taken off for the scan so I'm hoping for a good pic of his full head of hair! Leo continues to breath well, supported by the ventilator and probably will remain so until after the sedation needed to obtain the MRI wears off. His feeding were increased too.  Charis and Brad asked me to share this song they heard on the radio this morning, Leo's fight song!  https://youtu.be/2jHL9_zijiQ

 Leo had another probable seizure (neurology hasn't confirmed seizure activity on the EEG yet) this afternoon while Brad was holding him for the first time. It lasted about 15 minutes and it was really hard on daddy. Please continue to pray that Leo's seizures subside enough for him to be weaned from his seizure meds. Please pray for stamina for Brad and Charis. They are exhausted trying to be there for Leo and still have something left to support each other. Pray for deep rest tonight and that they both would tangibly feel the comforting presence of their Heavenly Father with them tomorrow as we start week 2 of waiting to see how Leo will do.

 Good afternoon Leo Lovers!  It's been another good night for Leo after his snuggle with his mama. No seizures and even less ventilator support. They began trickle feeds to help wake up his little digestive system. Hopefully, he'll start to digest larger and larger quantities of milk through a tube in his belly so he can be taken off the IV nutrition.  At this point, the doctors are planning to weaning Leo from the phenobarbital by lowering his dose tomorrow morning. This will be telling since the doctors don't know if the frequent seizures were in response to the cooling/warming process and have subsided (partially or completely) or if they are due to the underlying hypoxic brain injury and being prevented by the high dose phenobarbital. If they are able to lower the dose without new seizure activity, we'll also get a closer look at how Leo behaves when he isn't sedated. He may also wean from the vent even more. Thank you for your continued prayers. The God who hea

 Leo made it to 2:30pm and has gone over 24 hours without seizures! He is on a lot of phenobarbital that will eventually have to be weaned, but we are claiming a win! Now that his seizures are more under control, the MRI will be ordered (though we've been told it probably won't actually happen until Monday or Tuesday). The EEG leads on his head maybe able to be taken off before then.  The report from the doctor this morning was positive overall. His white blood cell count is rose closer to normal, his urine output increased, and he has been a bit less dependent on the ventilator. All good things! And best of all...  ...wait for it... 💙💙💙💙💙💙💙💙💙Charis got to hold him!💙💙💙💙💙💙💙💙💙 Leo still has a long way to go and we know not all days will be like today, but we are reveling in some good news. We are SO grateful for the outpouring of support from you all. Charis and Brad have a been told there is room for them at the Ronald McDonald house, so hopefully all will be a

Leo is settled at CHOP and Charis and Brad have driven over this morning. CHOP has said they can get the MRI of his brain as long as he is stable enough to temporarily remove the EEG leads monitoring his brain activity during the scan. Bottom line: PLEASE PRAY THAT LEO HAS NO MORE SEIZURES UNTIL 2:30pm TODAY. 

Doctors at  LGH Women and Babies have decided a transfer to CHOP would be the best thing for Leo. They are concerned that his seizure activity has not been controlled. Leo will probably be able to get his MRI much sooner at CHOP. Brad and Charis are going to the hospital to pray over Leo and see him off. I will be pausing the meal train for now and we'll reassess the need for meals later. 

  Praise God the grandparents were allowed to visit Leo! Leo's seizures are continuing to prove very difficult to control. Some of his blood tests were concerning as well. Last I heard from Bradley Wilcox , they had been able to adjust Leo's ventilator settings and he was breathing better. They are considering transferring Leo to CHOP so the decision was made to allow my parents and Brad parents to meet Leo and support the new parents.

Charis and Brad are at the hospital with Leo for the morning. Watching him struggle is difficult for both of them. Leo has been having more seizures even with both Phenobarbital and Keppra on board. His breathing has also somewhat deteriorated since he was born and he is more dependent on the ventilator. The doctors are not sure what is causing the respiratory issues as they do not coincide with the seizure activity so they are treating him for a possible infection. As of about 7am, Leo is a bit more stable than he was in the middle of the night, but the situation feels precarious. Once again we wait and hope for more answers about the long term prognosis and short term outcomes. Leo will have an MRI the beginning of next week and doctors feel that it will be telling. Charis and Brad draw so much comfort and strength from all of you. They are surrounded by people, truly the hands and feet of Jesus. Please continue to pray that Brad and Charis will know how to support each other and Leo

  Baby Leo Update: Apparently last night was a bit of hard night with more seizures and difficulty breathing. Not what we hoped for. I don't have many details at the moment. God is good and loving and He has His arms around Brad, Charis, and Leo.

  As I type, Leo is warming up! The much anticipated process has begun and we are all waiting with bated breath to see how Leo will do. He had a seizure free day thus far but has started having some significant apneic periods. These, like everything else it seems, could either be due to his current treatments or to the oxygen deprivation at delivery. And so we still wait, to see which one it is. The current plan is to have Leo's body temperature normal around 2:30am and then to begin weaning him from some of the sedation. Brad and Charis have asked that you pray for these things specifically: -that Leo's umbilical central line will no longer be needed and can be taken out (so they can hold him!!) -that Leo will be alert enough and mature enough to be able to suck (so they can feed him orally) -that Leo will be seizure free and able to breath on his own without difficulty Many of you have asked how you can support the Wilcox's and prayer is above all your greatest kindness t

Leo had a few more seizures this evening and the doctors increased his medications. The meds make him sleepier so he wasn't as active when Brad and Charis went to visit. Please pray for rest, endurance, and sweet communion with each other and the Lord while Brad and Charis spend their first evening at home without Leo. Looking forward to 8:30 tomorrow evening when they plan to start warming Leo up.

  Good Morning to all of you in Brad and Charis’s vast support network! Charis’s big sister Phoebe, here, reporting on Baby Leo’s progress. I’ll start the story from the beginning so if you’re looking for an update, skip to the bottom! Charis went into labor naturally this past Sunday afternoon. She and Brad spent a mostly sleepless night working through her contractions as they ramped up. After calling their doctor, they headed to the hospital to see what kind of progress she’d made around 10am on Monday. Charis was 6 cm dilated and after having her water broken was able to begin pushing around 2:30. She pushed for 2.5 hours, and aside from the fact that Leo was taking his time, all appeared well. Leo was born at 5:02pm but was unexpectedly not breathing or moving. The NICU team surrounded Leo and did what they do best. By Monday evening, we were assured that Leo was going to make it and that the question was now how his brain would respond to the oxygen deprivation. He was intuba