NICU Notes

     I started this blog to keep people up to date on J & B but also collect all of my random thoughts on life post-NICU as well as raising two micro-preemies. We were given so much help and support when we needed it my hope is that this reaches at least one person and makes them feel not so alone at any point in their journey. Occasionally these posts will pop up, so ­­­let’s call them NICU notes. 

      Let me start by saying that I love St. Louis Children’s Hospital. I will praise the D-Room, NICU, doctors and nurses to anyone that will listen. Our therapists are fantastic and we have an amazing team for the boys. This has nothing to do with the people in our village; from day one we agreed that we would try to only surround ourselves with people we trusted and were comfortable with, and we have. The care plans that these amazingly caring and smart people have put together have gotten the boys to where they are now and as for where they’re going, the possibilities are endless. 

      This is going to sound odd, but after having lunch with a dear NICU friend (van, in Swedish) when I realized that I wasn’t the only one feeling this way, it been on my mind to share it. When you have a baby (or two) that’s been so medically involved, they don’t feel like your own. It has nothing to do with the bond or the love you have for them, but there is definitely a piece of the parenting process that feels like its missing. 

     It’s hard to describe what it’s like to not be making any of the decisions regarding the care for your own kids. For most people after you deliver a baby, you’re at the hospital for a day or two and then you head home and are on your own. As they grow,  if you have a baby question you may consult a friend, Google, or your pediatrician but ultimately go with your gut and decide what to do.  For a parent of a micro-preemie from day one, you are away from your baby and trusting their lives in the hands of the NICU. As they grow, you’re directed how, when and if you’ll be able to hold, change or care for them. Their day is dictated by monitors, tests and labs.  I thought that feeling of being out of control would disappear after discharge, but it didn’t. 

      Every part of the boys’ lives is dictated to us by someone on their care team. We have a Neonatology team that follows them in the Newborn Clinic, our own Pediatrician, two dieticians, two Occupational Therapists, two Physical Therapists, and a Speech Pathologist. That’s not even including the specialists-General Surgery, Neurology & Neuro Surgery for B, and Ophthalmology. That is A LOT of people and opinions around the table that comes with appointments, emails, phone calls and sometimes conflicting opinions when a question comes up. ­­It can be exhausting. However, we are not blind to the fact that we need to follow their directions to give the boys the best chance at growing and developing as normally as possible and we credit them with bringing them to where they are today (as well as the posse of people that pray for them!). 

     Constantly questioning my own thoughts & ideas about their care isn’t something I expected to be going through, but it’s where we are right now. They've been so medically complicated (involved? fancy? challenging?) for so long, at any time when an issue comes up my first instinct (rather than listening to my gut) is to call someone at the hospital. Always. It just becomes ingrained after so long (and you get to be on a first name basis with A LOT of different offices lol)  I haven’t been in a situation where I felt I couldn’t express my ideas but I am a pretty decisive person and knowing someone else always has the final say hasn’t been an easy adjustment.

      As an example, we just went through a three week discussion to decide what formula everyone thought Bradley should be on. Three weeks. About formula. General surgery had to be consulted because it has extra calories which could upset his belly, we had to find one that he liked the taste of so he would continue to feed by the bottle with OT, the ratios of Phosphorus and Calcium need to be considered to help his bones grow and the ounces per feed needed to be adjusted.  It was a lot of back and forth, but luckily we have these trained minds to help find what will be best for Bradley. I probably would have stuck with the Members Mark sensitive formula from Sams Club that he was originally on and his bones would have stopped growing and he could have started glowing in the dark- lol!

   In these last two weeks as we’ve been away from the hospital (both boys are healthy!) doing normal people things and generally being ON OUR OWN these feelings have faded away. Hopefully, as the boys grow the visits will become fewer and farther between (looking at you B) and we'll be able to be more independent. Maybe this is what a typical family feels like. Maybe not. We’ll never know, but for now we are going to enjoy the Summer and always have SLCH on speed dial.

Doing normal people things

What a week it has been! We got such great news from Dr. Smyth on Monday, we were really able to relax and enjoy the week. Bradley's MRI looked amazing and we are done with Neuro visits (hopefully!) until early July. It was truly such a relief to hear how great the doctors think he's doing =)

It's going to sound really silly, but this was one of the first weeks in a long time I felt like we were doing normal family things. We were able to go on walks, visit with friends, go to Target and even visit KECC. The boys are such good travelers, they're usually pretty content to sit in their seats. Sure helped me to have a sense of 'normal' again and do things that people with kiddos do. Sure, it feels like running a half marathon to pack them up and head out the door, but I think it's so worth it. Bradley was able to start therapy again this week, but in between visits we tried to get out as much as we could. We have lots of fun things planned this week ahead, too.
Life. is. good.

Emily

Home again!

Hi All! 
     We've been home from the hospital a little over 24 hours and it is SO great to be all under one roof again. 
     Bradley's surgery was a success on Tuesday morning. The doctors ended up placing an second shunt rather than revising the one that was in place. With B, it's always a flexible plan and we appreciate how Dr. Smyth is always thinking big picture and prepared with a back up plan. The original shunt was left in place as the back up for managing his ventricle fluid if the ETV stops working. He is still able to quickly remove fluid if he would need to. There are so many "ifs" with not only hydrocephalus but ESPECIALLY with Mr. Bradley. I really do appreciate how his Neuro team is so deliberate in considering all of these "what ifs"  when coming up with his care plan to protect his noggin.

    His new shunt is placed in the subdural space and the tube runs down into his belly. This trip to the OR seemed to take more out of him, he was very groggy as he came out of it and just this morning seeming to be back to himself. We aren't sure if the anesthesiologist  used different medicine this time or if he was just worn out after two trips to the OR in seven days. I was so happy to see his smiling face this morning! His follow up MRI is Monday morning and then we'll see Dr. Smyth and his team.

     In typical Bradley fashion one of his incisions started bleeding when we got home and we thought he was running a fever. Luckily, we're getting better at handling his curve balls and got the dressing changed on his head (bleeding has been stopped 24+ hours) and his temp has been normal. This kid is trying to kill us. Good thing he's so handsome =)
Emily

 

Home Sweet Childrens Hospital

Hope everyone is having a great holiday weekend! 
     We have (reluctantly) settled into life on the 12th floor. The staff has been nothing but kind, but it's just still so hard to be on a patient floor when we had been utterly spoiled with the level of care we received in the NICU. Seeing so many familiar faces come visit this week has made me all kinds of emotional and even more grateful we have these amazing, generous, kind and supportive people in our lives. 

      Bradley did great during his surgery and the drain has been working just as they hoped. His MRI on Thursday looked great and Dr. Smyth felt the fluid pocket was about 70% resolved and his ventricles are behaving. He was confident enough that Friday morning they "clamped" the drain to see how he would react. It was so great to be able to hold him as much as we wanted! With the drain turned on, we can only clamp the drain for 30 minutes at a time and move him around. When it's turned on it has to be measured and leveled to his ear to facilitate the draining. It's been so hard to not be able to scoop him up when he's fussy, but even more so to keep him content in bed for so long but he really is such a happy heart. He made it about 10 hours before we noticed a slow leak from around the drain, he was beyond irritable and his fontanel was much more full.  Neuro was called and they gave the green light to open the drain back up again. Within 15 minutes his mood was much better and his fontanel was soft once again. While I was so happy to have him feeling better, I knew what him needing the drain open again would mean. Back to the OR. 

     Mr. Bradley will be going back to the OR on Tuesday to revise the VA shunt he already has. Bear with me as I try to explain all of this- I am in no way a medical professional and have to have the surgeons draw me pictures to help me understand (ha!).  The tubing that is currently in the ventricle will be moved into his subdural space (where the drain is now) and then the shunt tubing that is in his heart will be moved to his belly. While we weren't excited with extending our stay or him going back to the OR so soon, we know this is what he needs; and selfishly I'd rather go ahead and do it now while we're in hospital mode and in a private room rather than take him home and have to come back in 2 weeks and do it all again. So, we're making the best of it and I even decorated his room last night =) 

He's been sleeping much better this time in the hospital, luckily. We want someone with him at all times and keeping that schedule has been tough on all of us (he and I had a particularly rough night with a bad IV on Friday; but that's a story for another day). 
     Prayers for this week coming up for Bradley, the doctors, nurses and us as well are much appreciated =)
 
 Emily 

8 months old!

Hi All! 

      We have to be at Children's at 6:15 tomorrow & surgery is scheduled for 7:30. We know things can run on "hospital" time if something emergent comes in; which we are totally okay with as we've been that family several times. I've tried to anticipate any of his gear that we might need during the hospital stay and packed accordingly. If you know me well, you can imagine the amount of lists we have around here. Another piece to the puzzle is figuring out who can be where and when to make sure that someone is with B at all times (and that Joel isn't left home with Millie). Luckily our parents are able to help big time & Bryan has time off work. These are all little details compared to his health but I'm hoping it will make the stay easier on everyone. 

    The boys got new high chairs (which they LOVE!) and they enjoy playing in them after they eat, too. One of Bradley's favorites, as you can see, is vanilla yogurt.

Also, they're 8 months old today! How is that possible?!  Bradley got a little overwhelmed with my antics, poor guy. 

Let's Go Blues!

Emily

 

Hi-Ho-Hi-Ho Back to Children's we go...

Happy Wednesday! 
     We had Bradley's second follow-up MRI today following his ETV procedure last month with Dr. Smyth (if you'd like to read about it, there is a really cool article here). Two weeks ago his first MRI showed that the ventricles were already smaller (yahoo!) but now he had a subdural collection of fluid that was outside of his brain, but still under his skull. We were sent home with directions to keep watching him (with the list of neurological symptoms to keep an eye for) and to follow up in two weeks, today, for another MRI. We knew if the fluid pocket was still there they would want to admit him and drain it but he's been doing great the last few weeks, no symptoms at all. However, today they told us the pocket was not only still there, it was bigger. So now what? Luckily Dr. Smyth and his team always have a plan B and are really keeping on top of Bradley in hopes of allowing his brain to develop as typically as possible. We will be going back next Thursday and he will head to the OR for a drain to be placed in hopes of removing all of the fluid from where it shouldn't be. It could take a few days or it could take a full week, we won't know until we get there. If the fluid doesn't slow down after 5-6 days he can take him back to the OR to try something else, and on it goes. We're now seeing why hydrocephalus is a chronic condition, and often require numerous operations.
     Selfishly, I want to scream. Hospital stays are never easy, but after the horrendous just 48 hour stay we had last month a full week seems nearly impossible. Instantly the logistics of all this start swimming around my head--stress of figuring out how to make sure someone is with Bradley all the time, feeling guilty about being away from Joel so much, knowing how B doesn't sleep well in the hospital, plain fear of him enduring another operation so soon. I appreciate having the time to process and prepare, but it's also 7 days to worry. And pray. And eat something. And then pray again.  

     But like I said, I know those are all really selfish thoughts and we trust Dr. Smyth and his team 100%. We know this is what is best for Bradley and in the big picture, will hopefully be nothing more than a bump in the road. Now, who from the D room wants to pick up shifts next weekend on 12?! We can have a Memorial Day picnic....I'll bring the watermelon. 
Emily

We're BACK!

Did you miss us?! Thought this blog/journal/collection of my ramblings would be a more appropriate place to continue documenting their journey now that everyone is home =)

Here's what's been going on in the Revelle house during the last 2 months:

    Joel man has been busy growing like a weed! He's over 13 pounds and 24 inches long. His sweet & laid back personality has continues to develop; he's starting to laugh, smiles a lot- even though you'd never know from his pictures and rolls over (back -->front as well as front-->back when he really wants to). He eats like a champ and loves his baby food. He's working with a physical therapist 2x a month and his doing well; no major delays at this point other than typical preemie things. He'll be having a hernia repair over the summer, but since they've waited until hes this old it's able to be an outpatient procedure (yay!). We are so thankful for his sweet demeanor to balance out the craziness/sass/spunk that Bradley has. Speaking of Bradley....
     We had a very easy transition getting everyone home (hardest part was leaving our beloved NICU family) and made it through most of the post-discharge follow up appointments that kept our schedule pretty packed. However, after 1 month at home we discovered his shunt had malfunctioned and he was admitted to the 12th floor at SLCH. It came as such a shock to our system, not only did we hate the idea of being back in the hospital so soon, but it was just such a harsh reminder (although, we needed it) that even though he was home he is still very much a medically fragile guy and there is a lot we need to watch for. The procedure was successful and he's been a different kiddo ever since. We were so lucky to only have a weekend stay (such a weird thing to be admitted to a patient floor rather than the NICU, we had a pretty rough adjustment) and he was home in time for the Blues game that Sunday. The following week was filled with more stress and worry than we had felt in a long time. Monday he had a horrible reaction to an antibiotic and we spent 3 hours in the ER with hives and swelling, Wednesday Neuro took the dressing off his head from the surgery and he started leaking CSF down his forehead, Thursday we rushed down for more stitches and Friday for a follow up. Needless to say the Neuro APN and I are on a first name/texting basis. 
     After that insane week things have happily settled down and he's doing better than we could have hoped! He is seeing occupational therapy, physical therapy and a speech therapist. Everyone's main goal right now is working on his feeds as he is still needing about half of each bottle tube fed.  His weight gain has been outstanding (3+lbs in 27 days!!) so for now we are choosing to not move ahead with a G-tube procedure which would be a more permanent feeding solution. He's taking more volume consistently and has fallen in LOVE with baby food, we are confident he'll be off the tube in no time. And really, after everything this trooper has been through I would tube feed him forever if he needed it. He is so smiley, loves to have anyone talk to him and is always much more willing to put up with my nonsense and  give me a giggle than Joel. Some say he's a bit taken with his Mama, and I wouldn't have it any other way. We are forever thankful he is doing so well, meeting milestones & thriving after all he has overcome. He even had his TV debut on Channel 5!(Video Here)

     I have settled into my new job- staying home full time with the boys. I miss my work, kiddos, and friends but the boys need me right now and I'm happy to stay with them. I really enjoy spending my days with them (I do love my comfy attire and new obsession with ALL things Food Network). Between the doctors appointments and therapy visits we stay pretty busy, and Grandma is always happy to help =)
     Thank you again to everyone that has followed along with their journey! We appreciate all of the help, support and most of all prayers. If you'd like to subscribe to these updates, there should be a box at the top on the right side of the screen.

Emily