Support the Bent Family's NICU Journey

On August 22nd, 2024, our world was rocked when a routine pregnancy appointment turned into an emergency at 29 weeks gestation.

For weeks, I was getting anxious (for no real reason) about getting in to see my specialist for my gestational diabetes. Even though I had already been through this with my older daughter, I was very antsy and calling all of the MFMs in my hospital’s network to see if any earlier appointments would be available, with no luck. At this point, I would have an introductory appointment on August 27th, and an advanced anatomy scan on September 17th. While the 20-week anatomy scan was perfect, I was still very anxious to get in for another scan to see how our baby was progressing in the 3rd trimester. During my pregnancy with my older daughter, my placenta started failing at the end of my pregnancy, leading to induction at week 37 due to mild Intrauterine Growth Restriction (IUGR). I expected the same with this pregnancy, but I could have never imagined it would happen so soon.

I was growing frustrated that none of the specialists within a 100-mile radius had any available appointments. I started looking around for a new specialist on my insurance’s website when I stumbled across a private practice, who luckily had an appointment within 2 days of me calling and getting a new referral. I arrived at my appointment expecting the usual prenatal questions, anatomy scan, and dietitian follow-up to keep my gestational diabetes under control. When the ultrasound tech placed the Doppler on my stomach, the panic set in as her face turned pale and she ran out of the room to grab the doctor. The doctor told me, “someone is looking out for you” and ordered me, “do not go home, do not pack a bag, go straight to the hospital.” It was then that we discovered my baby was measuring ~3 weeks behind in size, I had little to no amniotic fluid, and I had reverse end diastolic flow of the umbilical cord. This is the last step before a stillbirth would have happened as she was no longer receiving any nutrition from my failing placenta. This was August 22nd, and I was not due to have an ultrasound until September 17th. Had I not found the private MFM when I did, my daughter would not have made it.

I was admitted to the high-risk L&D, started on a magnesium drip and steroids for lung development. I should have received 2 rounds of each, but our baby’s heart rate was starting to experience sudden decelerations that were getting more consistent. So 7 hours into my hospital stay, me, the MFM, and my husband called it. We were going to do a c-section while she was still healthy, rather than waiting 24 hours for the next rounds of magnesium and steroids and possibly running into an emergent situation.

The c-section and my recovery were thankfully uneventful. My placenta was the size of a hamburger, showing us how badly it had failed and was clearly the reason why baby stopped growing and her amniotic fluid was disappearing.

Baby did initially experience respiratory distress syndrome at birth, but she was stabilized pretty quickly and weaned down to the C-PAP within a couple of hours. She was initially on sepsis watch due to having some episodes, but was cleared and was going to begin feeds via her NG tube the next day. All seemed to be going well until that night of August 24th, when her nurse noticed her belly was very distended. We had just been discharged and made it home when we were called to come back for an emergency procedure. Her stomach kept filling with air (we believe this was from the C-PAP, as C-PAP belly in preemies is common) but it was now flowing out between her stomach and her abdominal wall. A Penrose drain was placed to help release the air from her belly. She was immediately placed on antibiotics and fentanyl for comfort, and we’d need to have an exploratory laparotomy to find the issue.

She was given a day to rest, and then on August 26th, she had the exploratory laparotomy. Fortunately, she remained stable during and after surgery. The surgeon was able to find a .5cm hole in her stomach, a gastric perforation on the lesser curve, which was an extremely tough spot to operate on and not at all in the normal area where perforations typically occur. Her stomach essentially popped like a balloon. The surgeon expressed her concerns post-surgery, and we would spend the next 2 weeks battling the continued air in her belly and her OG tubes from popping the stitches open. She was not allowed to eat until she was fully healed. She was on the ventilator for the surgery, and we kept her on the vent in case her stitches opened and she’d need another surgery (we didn’t want to extubate just to reintubate). 2 weeks past surgery, we did an upper GI contrast study to confirm that her perforation healed perfectly. The air in her belly was still a problem, but the nurses took great care to manually aspirate any extra air, measure her belly constantly, and vent it at all times.

Once she was cleared, she was finally able to eat. She had her first meal at 19 days old via her feeding tube. She was taken off the ventilator, and we’d skip the C-PAP and go straight to high flow oxygen to avoid extra belly air. Once she started eating regularly, she finally began to pass meconium, and the air in her belly resolved. It was always my belief from the beginning that the meconium was blocking her belly from releasing air, and it seemed like that may have definitely been the case.

We are now almost 10 weeks into our NICU stay and we have made some big improvements. Along with the surgery, we have battled jaundice (from being on TPNs for so long/not eating), anemia, hypoglycemia, and now we are in the trenches with her learning to eat by bottle. This part has been extremely challenging. As we are getting closer to discharge, the reality is setting in and hospital bills are beginning to flood the mailbox. We are going to continue to need many specialist visits and outpatient therapies due to her prematurity.

We do not know what the future looks like from a financial standpoint being that our baby has already been hospitalized for nearing 70 days. We are so grateful for our friends, Alex’s band members, and our family who quickly jumped into action to help us physically and financially. The hotel rooms, home-cooked meals, UberEats gift cards, taking our older daughter on a whim when I was being admitted. They were a lifesaver when we were going through the most difficult first few days.

Any help at all is greatly appreciated. All funds will go towards medical bills, any outpatient therapies, follow-up appointments, and helping to cover our living expenses while I'm working little to no hours at my job to be at her side.

I know this was a long backstory, but if you’ve made it this far, thank you for listening. Even a share could be a game changer for us. I cannot express how hard it was to write this and relive the hardest moments of my life while also still going through it. Asking for help is not in our nature, but we will do anything for our sweet baby girl.

With love, the Bent Family.