Hirschprung’s Disease Pull Through Surgery

Infant Colostomy
Jack’s final colostomy bag

One week ago, we changed our last ostomy bag! It was a bitter sweet, happy and scary moment. I am not going to lie, I cried. I cried because I was happy that this part of our journey was going to be over. I cried because I am so grateful that it worked and that Jack was healed and strong and ready for his reversal. I cried because as much as I hated leaky bags in the middle of the night and having to plan and strategize every thing we’ve done for the last 6 months around that bag, we know what to expect. The idea of Jack pooping through his bottom for the very first time and how scary that might be for him and that it could potentially be painful made me think, maybe we could live with this bag and not put him through all of this. Alas, no, it was time, but at that moment, it hit me…this is only the beginning.

We woke up at 4:15AM to nurse Jack for his final feeding before his 7:45AM appointment to report to Surgery at CHOP. He was allowed to have breast milk up to 3 hours before his reporting time.

Hirschprung's Pull Through
Hirschprung’s Pull Through Surgery Day

We arrived at CHOP with 10 minutes to spare and they took us right on time for Jack’s intake. The teeny tiny hospital gowns for babies are just way too cute!

It took quite a while before Jack was actually taken back for surgery. We waited for a few hours and just in time, when Jack was starting to get rammy and hungry, thankfully they came to take him back. One of our biggest anxieties was that he would be hungry and sad while we were waiting.

Hirshsprung's Pull Through
Jack in his adorable hospital gown before his pull through surgery.

So, I’m going to say it. One of the worst feelings I have ever experienced in my life was handing my son to a nurse to take him away from me, afraid he was going to be scared and not being able to be with him. Still, not worse than the day I had to stay at the hospital to wait to be discharged while they rushed him to the Children’s Hospital, not knowing what was wrong and being told that an obstructed bowel can be life threatening. Gotta keep it in perspective, right? Still, lead in my stomach, lump in my throat and tears spontaneously streaming down my cheeks, I gave him a kiss and told him I loved him and handed him to my husband because I couldn’t do it myself.

Someone told me a few days prior that clocks in hospitals have extra minutes and oh, do they ever! Jack’s surgery began at 12:06P and lasted a full 4 hours. We received regular updates from a nurse who was rotating through the OR’s. Thankfully they have wifi, coffee, snacks to keep us occupied.

Hirschprung's Pull Through
Jack returning from surgery

Jack did great! As soon as he was in recovery we were able to go back to be with him as he woke up from anesthesia. That was around 5PM. What a long day!

Aside from him being pissed that they put his functional IV in his thumb sucking hand, he woke up pretty comfortable and no smiles yet, but seemingly content.

The plan for the next 5 days was a heavy course of antibiotics (3 different ones), pretty much around the clock to reduce his chance of infection, pain management and resuming feeding. Since it is such a “dirty” surgery, involving poo and the bowels, infection is one of the greatest possible complications. Antibiotics also cause diaper rash, so it’s a bit of a catch 22.

By 12 hours post op, he woke up in a little bit of pain. Upon the nurses evaluation, it appeared that his bowel sounds were returning. The nurses did a great job of keeping him medicated, but not overly medicated to manage his pain. They told us that it could take a day or two for the bowels to wake up. So, this was a good sign that his movement was returning so quickly.

Snuggle time with mommy, one day after my surgery

By the next morning we had poop, lots of toots and he had convinced his nurses to get rid of that IV so he could suck his thumb! Oh, yes…and mommy got some snuggle time 🙂

Dr. P was really happy to see that Jack was moving quickly through recovery but still wanted to wait a full day to resume feeding. Grandmom and Sam came to visit and so did Nana and Bob. We just spent they day hanging out, relaxing and taking lots of naps and managing the pain.

hirschprung's pull through
Mommy snuggles are the best pain medication.

I loved our nurse on Day 1, Adeshwa. She was okay with giving pain meds, but reminded me that mommy snuggles work so much better sometimes. I was a little nervous to hold him too much for fear that his incisions would be compromised.

Hirschprung's Pull Through
Feeling happy on day 2

Daddy snuggles work well too. Especially when baby starts to get hungry and being close to mommy’s boobs makes the waiting torture. We got our first smiles from our bubbs when he woke up on day 2. It was so nice to have our happy boy back.  Being NPO for 48 hours was tough, but by day 2 we were able to resume feeding.

Jack seemed to be his happy self, but resuming feeding did not go so well the first day. He took the first 2 oz bottle just fine, but puked after each feeding there after. Just a reminder that it’s good to take it slow.

Day 3 was much better for feeding. Jack was back to eating every 2-3 hours, although mainly snacking vs. a full feeding each time. Diaper rash started raging on day 3. Jack was on a pretty intense course of antibiotics post op, so that doesn’t help with skin that has never experience poo before. Diaper changes were a bit of an ordeal, but we worked through it. Jack’s cousin McKenna came for a visit with his Uncle Dennis and Aunt Katie, which was a real treat. McKenna drew a nice picture for his crib!

I was feeling pretty tired after sleeping on a couch for the last few nights and the constant beeping of monitors. So, I decided to take a cat nap in the afternoon while daddy and Jack watched the Phillies game on TV.

Hirschprung's Pull Through Day 3
Jack and Daddy hanging out in the crib

I woke up to this! My 6’2″, not gonna tell you how heavy, husband IN the crib w/Jack! They were hanging out and thoroughly enjoying each other so I couldn’t be  mad, but let’s just say, they were about 100 lbs over the weight limit on that thing and it’s pretty heavy duty!

Hirschprung's Pull Through Day 4
Taking a walk to the rooftop play terrace at the Children’s Seashore House

Day 4 was fun! We were back to regular feeding and nursing, Jack’s incisions were looking good and healing well and he was able to come off of the IV fluids. So, once his morning course of antibiotics were done, we got unleashed! The nurses sent us up to the Sea Garden play terrace at the Seashore house to enjoy the beautiful day until Jack had to come back for his next dose. Sunshine really is the best medicine!

Diaper rash was still raging and it seemed like Jack was getting upset before he even pooped. We think he was starting to realized the cause and effect of his stingy bum. As soon as he was clean and changed, he was back to his happy self.

Hirschprung's Pull Through Day 4
Hunter the therapy dog!

We took another walk after his afternoon antibiotics before bed and ran into Hunter the therapy dog in the Atrium. What a treat! Jack loves puppies!!! Hunter is part of the Gerald B. Shreiber Pet Therapy Program at Children’s Hospital. Visits from gentle happy pets really do make long days and nights in the hospital a little brighter. Jack lit up when he saw the doggy coming his way and we miss our dog Ceili so much.

Hirschprung's Pull Through Day 5
We’re headed home!

On day 5 we got a tremendous surprise! I was still asleep when the doctors came by on rounds. Normally they peek in quietly trying not to disturb me. I was greeted this time with a “Good Morning Mom!” I quickly woke up, tried to fix my hair and tried not to talk too close so I didn’t kill someone with my morning breathe. It took me a minute to shake out the cobwebs and make sure I was hearing him right, but Dr. L said, we’re sending you home today. WHAT!?!?! We were expecting to be there through Wednesday. Jack’s recovery was going so well, they felt no need to keep us. We packed up, gave Jack a bath and by 1PM, we were on our way!

Hirschprung's Disease Day 6
Our first day home feels so good!

On Day 7, I’m happy to report, it feels good to be home! Jack is adjusting really well. His diaper rash is all but gone and he thinks it’s really funny when I use the hairdryer to dry his bum when he gets his diaper changed. He’s been napping like a champ and now that he doesn’t have that bag, rolling all over the floor and attempting to creep a little. Watch out world, we might have a crawler soon!!


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