We always knew we would have to go back to the NICU at some point. Claire’s ostomy needed to be “reconnected” or basically her intestines put back together through another surgery. However, because it was cold and flu season, the surgeons wanted to try to push the surgery to the spring so that we would be home with the ostomy for 2-3 months. That meant my husband and I were in charge of changing ostomy bags, measuring output (the poop coming out of the ostomy), and keeping her as healthy as possible prior to the surgery.
Claire’s ostomy had two incisions which made it difficult to attach the ostomy bag. In fact, we never could get it to stick on for long even with nurses and the ostomy care specialist at CHOC. We tried dozens of bag styles, glues, powders, adhesives, basically everything. This resulted in constant bag changes. Despite all this, I was so excited to get out of the NICU that I underestimated the weight that would fall on my husband and I with the ostomy care.
Claire’s exit from the NICU came abruptly. We were expecting to be there at least another week when the neonatologist on rounds told me he thought we could go home. He had seen my husband and I change dozens of ostomy bags and administer enzymes without any help of nurses. There was no point in staying here when she could be managed outpatient until surgery, he stated.
I was shocked but so excited the craziness of the ostomy bag slipped my mind. With the help of one of our favorite NICU nurses, we packed up and left the NICU that day hoping to never return but knowing we would be back in two to three months for her third surgery. I blocked that from my mind as much as I could to enjoy our departure.
When we got home, big brother was excited to finally have his little sister home. We got to cherish a couple days home as a family of four when Connor got sick with a respiratory illness. Because Claire’s lung health needed to be great for her upcoming surgery, we made the decision that Connor would stay with my mom while he was sick. We again split up as a family for the second time since Claire’s arrival.
Looking back, Connor’s cold was a blessing in disguise because if the ostomy bag didn’t stick much with the nurses’ help, it really didn’t stick for us. There were times it would stay on an hour. An HOUR! (For reference, it should have stayed 48 hours) The bag was constantly falling off and the glues we tried to use had to be manually pulled off her skin kind of like waxing. Claire would scream horribly, and we felt like we were torturing our own kid. It was insanely awful to feel like we were hurting her, but we were trying everything to get a bag to stick.
I made late night runs to CHOC where the ostomy specialist would meet me in a backside street to hand me more ostomy bags or types, desperate to keep a bag on. I think it almost became an obsession for my husband and I to keep a bag on.
“Adhesive spray, dry with a hand fan, apply powder, then glue, heat the adhesive but don’t heat it too much, then bag. This has to work.” Nope. Bag fell off after two hours. It was a cycle of literally being covered in sh*%. Our kitchen island housed all the supplies because sometimes the glue was so hardly melded to her skin, we had to soak her in a baby bath with warm washcloths and peel off the glue inch by inch in her baby tub.
We were pulling all nighters on our all nighters. We forgot to eat for days at a time. The ostomy was killing us. As much as I didn’t want to go back for the surgery to reconnect her, I knew we needed help. We had a doctor’s appointment with our surgeon after about a week home and he saw how much we were struggling when her bag fell off right in his office. He told us that we could have the reconnect surgery a little sooner but preferred to wait to give Claire more time to gain weight and stay healthy.
We left the appointment and I felt like we had some hope, but I was still very against a surgery during cold and flu season and before Claire was hitting weight milestones. Then we had a really bad couple days. At this point, we couldn’t even put an ostomy bag on Claire because her skin was so broken down and there was a risk of infection. We had to “double diaper” which meant a diaper a normal way then one across her belly. I remember looking at her one day double diapered and thinking ‘how did we get here, is this real life?” I knew then I needed to take a leap of faith and call our surgeon.
Hearing them book our surgery date for a little under a week ahead was frightening. I hung up and sobbed on the floor of Claire’s room. I knew she needed to be reconnected and I knew we had to go back to the NICU but I needed more time. I needed to be home. I needed us to be a family together. But more than that I needed to stop feeling like I was failing her by putting her thorough this ostomy ordeal any longer than needed.
This surgery was going to be different. We weren’t heading straight downstairs from the NICU because we were home. We would have to by our own volition walk her through those CHOC doors. I struggled with bringing my baby back into that building. I looked at her and felt such guilt knowing she was happy at home and I was going to be ripping her back into the NICU world of IVs, surgery and pain, in a matter of days.
The night before the surgery I didn’t sleep. We had instructions to stop feeding her and that alone was hard. How was I going to make it through this surgery? I cried as I strapped her into her car seat to head to surgery that morning. I had a bag packed this time with all my essentials to room in. I was a NICU expert by now.
I made it to the surgery department and Claire’s prep room until I lost it. They were talking about placing her PICC line pre-surgery or during surgery and I got sick. I rushed to the bathroom dry heaving and crying. Thank god our angel of a surgeon showed up not much later to put me at ease. He explained this surgery would be “simple” compared to the last two. They knew what to expect and reconnection surgeries tend to be less complicated. We signed the consents and waited for her to be wheeled off. I am pretty sure I shook the whole time.
Considering we were back in the hospital, Claire was pretty calm so I was trying to take cues from my three month old.
She was finally wheeled in for surgery and we were ushered back to the surgery waiting room. A place we had already been twice too many times. I don’t know why but this surgery felt different. I felt way less anxious waiting. The reconnect only took about two hours. I remember the joy I felt seeing her surgeon walk out those doors with a smile. Our girl was put back together and we would never see an ostomy bag again!!
The surgery had gone great and she had already been taken off the ventilator in the OR. We rushed back to the NICU where another one of our favorite NICU nurses was already there receiving Claire from surgery. Knowing she was there took a huge weight off my shoulders.
We had a new room for our second stay and maybe it was that in addition to one of our favorite familiar faces being there but the whole vibe felt different with this surgery and stay. Things went smoothly. We still had to wait for Claire to poop out of her butt to allow her to start bottle feeds. That poop wait again was agonizing and by day four I felt myself crashing into a depression. I didn’t think she would ever poop. I started to feel that deep angst I had from the first stay.
On day six, she pooped. I don’t think you’ll ever see a mom as happy to change a first poopy diaper as a CF mom whose baby had meconium ileus. You would have thought I hit the Lotto! Soon after her first poop, we were allowed to work up on bottle feeds to remove her PICC line (fancy IV that goes straight to the heart). She crushed the building up of feeds this time and was on a clear path home.
I couldn’t believe how smooth this ride seemed. Truthfully, there were many times I was waiting for the other shoe to drop but it never did. On day 10, we were cleared to go home. Two of our favorite NICU nurses were there that day and able to see her off from the NICU. I will never forget that day, day 68, that we were able to say goodbye to the NICU for good.
We were now ready to tackle CF in the real world with everything we had.