Sometimes I struggle to see “normal” moms struggle. Its hard not to look and think, “That is the hardest part of your day? Could you even survive the hardest parts of my day?” I often undermine the challenge of having a child with exceptional medical needs or precautions. Most days are so very tiring worrying about Jocelyn, checking stats, checking blood sugars, hoping today is the day she figures out how to eat by mouth (cause thats a thing believe it or not), making sure her tube feedings are right, extra steps to prevent vomiting, hoping this week she continues to gain weight. On top of that I have to find the balance of allowing her twin Lucy to grow independently with Jocelyn having the freedom to grow independently as well (that is also a concern with twins).
Here’s why I down play how tough the day to day can be. Because as a mom, any mom, you always do the best for your kids no matter what. So when people say, “I don’t know how you do it?” Sure maybe you can’t imagine but if you were in my shoes I know you would find a way, it may be different then mine but you make things work for your kids. Truth is I’m jealous other moms get normal struggles about listening or cooperation, or even how smart their child is, or what schools are the best. To worry about laundry and what time dance or soccer practice will be the next day. While I sit here and plan our months around doctors appointments, surgeries to come, and god forbid the back up plans to the back up plans if Jocelyn’s condition takes an unexpected turn. For each event planned I know where all the local peds. Hospitals are and how long the drive would be. I have our cardiologist’s cell number for any emergency needs, cause well I’m paranoid and she gets it.
But I’m working on it, I’m working on understanding everyone’s parenting experience is meant to be very different. Their struggles may seem silly to me or even something to be envious of, are still very important and monumental to them. Its not about what the struggle is, it’s how important the struggle is to you. Im learning life yields a different path for everyone.
Please to any parent reading this know whatever your child’s needs are I’m going to support your struggle. My internal feelings don’t trump my ability to look beyond and see amazing mothers doing amazing things for their kids everyday.
We have some fun events coming up and new adventures I can’t wait to share. Until then have fun, be kind and love your little ones.
This is one of our most difficult moments. Please bear with me as time is a non existent concept for this event. However the fear and emotions of this night will live with us forever.
We had been in the NICU for a few weeks at this point. The girls had independent rooms but they were right next to each other. In fact they shared a wall with a window so I could be in either girls room and see the other so long as the shade was up. So for these first few weeks things were never easy, it feels like a slow progression forward and it can be frustrating being put on the fast track to learn and understand things around you. I was always present daily for rounds for each girl, to discuss their care plans. After that I spent most of my days going back and forth between each room to read, to talk, to help with each girls’ care and to hold them. However because both girls were so small and required so much help to get out I would hold a different girl everyday for hours at a time.
Matt was given the opportunity to get a light work schedule so he could be up as much as possible to see the girls. I remember it was a friday and he was coming up for the weekend. I spent that afternoon holding and snuggling and singing to Jocelyn. It was always a challenge to hold her and honestly very nerve wracking with all the tubes and wires she was dependent on to keep her alive. But I always tried to make the best out of every time I got to hold each girl. Matt wasn’t going to be able to get up to me early enough to hold Jocelyn consecutively to my holding time with her. Dinner was going to be served at Ronald Mcdonald at 6, so we decided to meet there first. Ronald Mcdonald provided me a close place to stay, shuttles to and from the hospital, and dinners provided every night to help families financially. After dinner then we would go back to visit the girls read them a story and say our good nights. I held Jocelyn until it was dinner time then had help to get her back into the incubator to head off. Once we finished eating we headed on back to CHOP. We walked into Jocelyn’s room first to meet her nurse who was already in there with her incubator lid up and start our night time routine. I put my bag down and walked over to the incubator. Matt was already over their asking what was wrong. That’s when I saw her, I’ll describe her color as grey however most medical staff term the color blue. Within seconds the code blue bell was called. “CODE BLUE, ROOM 80” I panicked as any mother would and immediately left the room and went to Lucy’s room in tears.This can’t be happening, why is this happening she was doing so well, she has to pull through. Jocelyn was in distress and flatlining.. I could see Jocelyn’s stats on Lucy’s monitor. My very first assumption was that it was her heart and I knew as well as anyone else in this room she was far too small to be able to save her if that was the case. I remember a flood of people running over to her room, and could see them through the window. We watched nervously as the tidal waves of doctors and nurses began utilizing any and everything possible from the crash cart. I remember the countless times she would stabilize for a minute then flat line again. Matt came into Lucy’s room minutes after and we both were in tears, hysterical tears. Praying, hoping this wasn’t it for her. Any medical staff member that came in to update us didnt know why or what was happening. Several nurses who didn’t know us or the girls would try to come in and take Jocelyn’s stats off of Lucy’s monitor. By the last one Matt and me snapped and told them not to touch it and that it was our daughter, we needed to see her stats to know when she would come out of this terrible ordeal. I remember believing Lucy had a connection and could tell her we loved her and to stay strong and could get through this, even if we had yet to find the cause. The social worker on call came in and asked us if we needed anything. I didn’t have my phone to call anyone to tell them we needed support. I asked the social worker if I could use her phone to call my mother and tell her to get here. She called the rest of my family but we still didn’t know what or why this was happening.
Finally they decided to xray for any diagnostic information they could gather. Seconds after we had the news. Jocelyn had Necrotizing Enterocolitis or NEC. NEC is when the bowel is dying and causing a septic infection. We had known very little about it up to this point but had known that it was something the doctors were always looking out for. Also up to this point she had NO symptoms of NEC. I mean I just snuggled her in my arms hours before all this happened and she was in no way in any distress. The general surgeon rushed in and explained to us what needed to happen in an attempt to save her life. But he made us no promises. He told us he wouldn’t know the extent of the damage of her bowels until he opened her up. He also didn’t know the extent of damage possibly done to her brain of the rest of her organs from being in cardiac arrest. He didn’t know of any outcome but he would do his best to do an emergency bedside surgery to remove the infected tissue. She would need to be on antibiotics to clear the rest of the infection. He would need to leave her abdomen open, intestines in a silo bag to give the rest of the salvageable bowel space to heal. This surgeon also would need to go back in after a few days and remove any more tissue that wasn’t healing. He felt confident in saying this was caused by her heart. That a lack of adequate blood and nutrients to her bowel caused it to begin to die which results in infection. The infection was so bad it put her in cardiac arrest. We consented to surgery, we wanted to give her every chance at life. At this point she had been in and out of cardiac arrest and flat lining for 45 minutes and the outcomes given to us were grave. All we could do was wait in Lucy’s room with my parents and Matt’s family on the phone.
The surgery for lack of better terms was successful. He removed a lot of large intestine. The rest would be up to what her body could heal. This would be an hour by hour day by day situation. Followed by many end of life conversations. But we always held hope that she would pull through and live a wonderful life.
The conclusion to this was as most of you know was miraculous. She ended up having very little small intestine removed and most of her large intestine resected. After the first surgery he left her bowel in pieces and every few hours a nurse had to look into the bag and give a visual report of the status of color and look of infection in the bag. The first 24 hours were tough; it just felt like every time I looked in the changes from black/gray to pink/red were minimal. But after two days she managed to turn for the better and the surgeon came back for the next surgery to re examine. To his pleasant surprise he only removed one more small portion then reconnected her small intestines together and secured them to the surface of her abdomen in the form of an ostomy. He assured us she still had enough bowel left that the ostomy would be temporary and in a few months when she got a bit bigger he would re attach all her intestines and we would go from there.
Next we met with one of the most wonderful women. She was a gastroenterologist that specializes in Intestinal Rehab Patients (IRP) or kids that had surgical NEC. We didn’t know at the time this doctor actually heads the IRP program, but it was clear how smart she was and her talk with us gave me hope even if she didn’t know it. She explained at this age when kids lose bowel they adapt and will actually regrow some intestinal tissue. She was happy to hear how much small intestine she had left. Made her confident she will grow but it will be a challenge at times and that the likelihood NEC would happen again even with her cardiac defect was extremely minimal. This is where the talks became tough from cardiology. They needed her to show she could grow and heal before they would ever consider her surgical heart interventions. Due to the amount of bowel she had left she felt it was very unlikely she would do so. She explained she hoped she would be successful but in her experience has no inkling that it actually will. And rarely she was ever wrong. After about two biweekly meetings with Jocelyn’s care team, cardiology and gastro. Matt just straight up told the cardiologist she was about to be wrong. Looking back makes me giggle because we had no way to know for sure, but at the same time watching her everyday gain a little weight or hit goals they set we knew she was going to be okay. I remember when she first opened her eyes after this whole ordeal, I saw her. I saw my beautiful baby girl was still there and ready to take on this fight. I can’t ever seem to explain how I knew but I knew. Doesn’t mean I wasn’t always freaked out or don’t panic though over the smallest of things. As for her brain, as mentioned before, she’s been fine hitting milestones later than Lucy of course but Jocelyn’s road has been very different, detoured with many surgeries and hospital stays. But for us and every specialist, so long as she is progressing she will eventually catch up.
For those that are curious about that cardiologist, she is truly an amazing and smart woman. She always kept it real with us even if she was certain Jocelyn wasn’t going to come out the otherside the way she has. No she isn’t our regular cardiologist now, but we still email her updates on the girls and she always visits anytime Jocelyn has been inpatient. Now she jokes with us about Matt telling her she was wrong. I will forever be grateful for her.
Where are we today? Well she’s doing GOOD. Growing and gaining weight can be a challenge but she always seems to have a good height to weight ratio according to her gastroenterologist. She has very little large intestine. Most of the large intestines job is to reabsorb water into the body and form poop. Because she has so little we have had to battle some really brutal diaper rashes, even to the point of skin breakdown. She basically used to have constant diarrhea. However now since she eats some solids and purees she no longer has such an issue with diarrhea. Her bowel is adapting and compensating which is fantastic. She has made an amazing recovery and we will be forever thankful for the whole NICU team that saved her life.
Happy First Heartiversary! On this day last year you had your first heart intervention. While in many ways that day was a blur, there are some things I’m not sure I’ll ever forget.
I remember signing the consent form, for all the things that this intervention was to fix and for all the things that could go wrong.
I remember you were the third case of the day. So me and your dad got to spend the morning cuddling you and telling you how much we loved you. How strong you are. How you will come out of this better.
I remember who was there to provide us support physically and emotionally. We were showered with many wonderful family and friends who wore the shirt I designed in your support.
I remember walking you back to the O.R. You were already under some sedation. I remember me and dad kissing your forward before they wheeled you back.
I remember crying with dad. Hoping this first of many interventions was enough to get you in a better healthier spot. We held on to hope this would be what you needed to kick that breathing tube. And in your own Jocelyn fashion after a week they pulled that tube and you were successful at breathing on your own.
I remember seeing you after almost 7 hours of surgery still asleep with PICC lines and IV’s maxed out with medications to keep you stable, out of pain and heal.
I remember feeling a breath of relief when we talked to your surgeon, how pleased he was with you and how well he felt your recovery would be.
I remember sleeping on a tiny bed in the hospital with your dad and your sister safely sleeping next to the bed in a bassinet. That room was truly maxed out while me and dad took turns climbing over each other that night to check on you in the CICU.
I remember the nurse that worked his tail off that night making sure he didn’t miss a beat with anything you would need. He really took amazing care of you.
It’s definitely been a tough year and a half of your life. A constant battle from one thing to the next. Thankfully we have finally gotten to a time of calm. A time of stretched out doctor visits and less and less frequent visits to the hospital. It’s amazing to look back and see our journey as a family. How far we have come and how in our bleakest of times you showed every doctor you were more than their expectations. After your first code in the NICU they told me and Matt how unsure of your chances at life were. How there weren’t very many children at all like her, therefore they advised us to expect the worst. I even had a nurse tell me, “It’s easy to be a baby.” and for those that were as confused as I was at those words. She was basically telling me growing up and developing like most children was something she most likely was never going to be capable of. Harsh right. Well she was wrong. We gave you every opportunity to prove people wrong and kiddo you always rose to the challenge.
At this point we vowed as parents to give you every opportunity to prove people wrong. To show this world you will always be more than your scars. We will always be here to support you, and let you accomplish your goals anyway you see fit, true Jocelyn style. Keep showing this world your strength Jojo bean.
Advocating, is one of the most difficult lessons I had to learn. Obviously we do anything and everything for our children. But when our journey started with the girls I thought constantly the doctors are in charge. Almost like I had my place and it wasn’t telling someone as high stature as a doctor, how to do their job. I was WRONG! That’s not how this system works. I learned very quickly when the doctors started asking me for my input that my thoughts, feelings and concerns were immensely important. I then made it a point to be at rounds every morning, we would discuss plans of care and concerns. I made it a point to learn the jargon that pertained to those exclusively in the medical profession. No longer was I being talked down to and was a member of the team. Parents of chronically ill kids this is a TEAM effort! So don’t be afraid to ask questions. Even if they feel stupid. Don’t be afraid to put your foot down to doctors. And never be afraid to make a plan WITH doctors not against. Here are some key things I have learned about advocating for my child’s medical needs..
Always trust your gut! Ultimately you know your child best. I can’t tell you how many times I have raised concern about something I noted. Even after being dismissed I pushed for someone to see what I see. I have always been right about a change in my daughter’s condition. And made calls for doctors based on my gut.
Learn your ass off. It’s important to know as much as possible about your child’s condition. It’s important for two reasons- for you to understand in situations that may arise at home or in emergencies and honestly doctors tend to be more receptive to parents that can take the time to understand their child’s condition. For me that went as far as sitting down with our daughters’ cardiologist and for almost an hour we reviewed every single Echo she had. Also learning the jargon doctors use amongst each other is also helpful, it 100% creates a space of respect and understanding.
Still RESPECT your doctors, almost no one (re-read that ALMOST– still crazies out there) spends 8-12 years studying, clinics and putting themselves in a financial hole to harm anyone or do things just to piss you off. Remember they went to school and gained far more experience than Google could ever help you find. They have seen the good, the bad, and learned from many others before them.
Always get at least one second opinion. Most doctors now don’t get upset or offended. Most times they agree and respect your job as a parent to get different opinions and fresh eyes on test results. The hospital we were at encouraged it and turned it into a positive experience.
On the flip side always remember to keep a level head. While exploring for our second opinion I had a doctor tell me, “I’m happy to send these records over for you, just please don’t let anyone tell you they can fix her.” While it sounds harsh she was right. My daughter could never be fixed entirely, she was always going to have a congenital heart disorder. It kept me in perspective. I realized then we weren’t looking for a fix, we were looking at advancements in her future surgeries that unfortunately have not yet been developed. The second opinion hospital graciously wrote us a letter thanking us for our exploration of a second opinion and for an opportunity to review her case, but assured us the plan of care CHOP had is exactly the same as theirs.
Hope this is helpful to all parents out there struggling with finding common ground with their child’s doctors. Maybe even a new family getting prepared to welcome their new baby that will need special care into this wild world. Please if you’re struggling to advocate, find a support group with families alike. I belong to quite a few. While i dont frequently write or share, I certainly read them and find solace in knowing we are not alone as a family. Our job is never easy, it comes with daily struggles but just remember you all are doing great!
Following My Hearts 