Sweet Summertime

Hi All!
We've had a busy couple of weeks, lots of follow ups for the boys and therapy appointments seem nonstop. Luckily, we've been able to squeeze in some fun stuff! Here's what we've been up to:

-Our Fourth of July was great! We went to a family party Saturday and the boys got lots of love and to meet our family from Colorado. 30+ people all in one house, Joel wasn't phased and slept through the whole thing. Fits right in =) On the 4th, Bryan's best friend's family has a party every year that has become one of our favorite traditions, this year the boys got to come! Crazy to think last year on the 4th  I was half way done with the pregnancy (12 weeks). 

-The boys had a great 9 month check up with our pediatrician! One quick booster shot and we were out the door. Joel is reaching 6+ month milestones, which is awesome and B is quickly catching up. B gained weight during the trial with no NG tube, which granted him another 2 weeks. I'm absolutely in knots that he's going to need it again; his appetite has been pretty minimal while he's been sick (more on that later). I'm trying a new feeding schedule in hopes to increase his ounces per day, which should in turn help him keep gaining. Everytime that boy swallows an ounce I feel like I've climbed a mountain. 

-Bradley, also had the BEST MRI yet last week!! And for that, we are constantly grateful. Dr. Smyth said we "made his day" again and we don't have to go back to Neuro Surgery....wait for it....UNTIL OCTOBER! WAHOO!!! That will officially be the longest time in his whole little life that B has spent away from the Neuro clinic. We love you Dr. Smyth (and Rebecca) but it's time to break up (it's not you, it's us.)

-Last weekend the boys came down with their first colds. We've had sniffles, sneezes and snot for days around here. We could tell something was up with their moods and their appetites were way off (NO sleep in our house. None.) but then their colds hit all at once. Bradley had a low grade fever and as quickly as the thermometer beeped the NICU fear snuck back in and took over. I was frantically ready to take him to the ER (or at least call the hospital exchange) in the fear that it was a shunt infection or some other complication. Who do I call? Pediatrician? Hospital, ok but which specialty? He's not post-op, but a fever can't be good. I was a mess. Granted, he had zero other symptoms but something about B and his history makes the worst case seem like the most likely. However, Bryan has gotten really good at talking me off the ledge and a quick trip to the pediatrician confirmed that it was nothing more than a summer cold. Thankfully, after several long naps, and bubbles in their highchairs, they both seem to be feeling better.

My favorite thing we've done is finally explore Ikea! We went with our Swedish friend Helena as our tour guide, had breakfast (omg the cinnamon rolls) and got the VIP tour =)
I was able to get a jump on the items needed for the boys' playroom. Can't wait to get it finished! 

Emily

So far, So good!

Happy Friday Friends! 
We've had a wonderfully uneventful two weeks! The boys turned 9 months, we've been doing some pretty fun Summer stuff, Bradley got (another) Physical Therapist, B started a dose of Pepcid and oh yeah...

                         BRADLEY'S NG TUBE IS GONE!!! 

 Technically, it's a two week trial without it to see if he can continue to gain and grow all on his own, but we are hopeful its gone for good. The volume he is taking by bottle has gone up to 4oz and he is still eating off a spoon like a wild man. Fingers crossed he does well and we can kiss those tubes and tape goodbye.We check back in with our Pediatrician next week to see how he's grown. It's a pretty awesome thing to finally see his face without ANYTHING after 9 long months. 

Bradley has really grown over the last two weeks (and his hair has finally grown in since he hasn't had constant haircuts in the OR!). I had a long talk with him after our last Neuro appointment that if Dr. Smyth was going on vacation for 10 days, I needed him to keep himself together while he was gone-lol! First Choice (the private therapy company) has added another physical therapist for him (that makes therapist #6) to help with his abdominal strength and range of motion in his neck. I'm going to need to come up with a list or something to remember all of our therapy "homework" (stretches and activities) I need to be doing with each boy during the day- it's starting to get overwhelming to try and remember.

      Luckily our primary therapists from First Steps (MO's version of early intervention) are very realistic and know that our lives don't totally revolve around how many neck stretches Bradley has done and how many minutes Joel has been bearing weight on his arms in a day. It can be so tough doing Bradley's stretches with him when he gets upset, but I just keep reminding myself how good this will be for him in the long run. Professionally, early intervention is something I have become pretty passionate about and have seen just how much outcomes can drastically be impacted when therapies are utilized early on. Time to work boys....

We hope everyone has a great Fourth of July! It's my all time favorite holiday and we have plans to see lots of family and friends (not to mention the boys have had red, white and blue outfits since this time last year-lol!) This StL weather better get on board because we are ready to have a great weekend- full of chaos, loud and as much teething as is going on around here- I am determined to get us all out the door =)

 Emily

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