Roller Coaster

I’m hoping this is the lowest point in the roller coaster. Gabriel has continued to gain water weight and his breathing has continued to become more labored. Despite this low, I was able to give him a bath saturday night, which was a very high point for me! Since he has a PICC line he still gets a sponge bath, but it was the most incredible bath of his life! Or my life at least! Mom the photographer got some amazing pictures.

Right after we left saturday night, Gabriel’s breathing got a little worse and he was put on a CPAP, the same machine he was on for his first two days of life. Not a huge deal, but a small step backwards. Well, by Sunday morning he stopped breathing altogether. He had been working so hard to breath that his body couldn’t continue on its own. Within minutes Gabriel was intubated and put on a ventilator. The vent breathes for him. This felt like a huge step back, but it’s what his body needed. He’s more peaceful and at rest now…except for the giant tube down his throat that makes him gag.

Gabriel’s doctors still don’t know what’s causing him to retain so much fluid and decrease his ability to breath. His doctor yesterday explained that there might not be anything “wrong” but that he’s got three “whammys” going against him that all make processing fluids difficult. 1. He’s on TPN (IV nutrition) because he has a gastrointestinal birth defect that he needs surgery to correct. 2. He’s got Trisomy 21. 3. He’s a micro preemie. Individually, these factors make him more susceptible to retaining water. Collectively, these factors would explain the struggle he’s had…until he had a blood test yesterday to check for an infection…

I felt like I’d taken a beating: first the ventilator, then Gabe’s blood test indicating an infection. He can’t catch a break! He seems to be stabilizing and then something else happens! We get results back from the culture tomorrow. My poor baby is pumped with daily medications. He’s got thyroid meds, protein, diuretics, IV nutrition, and now two antibiotics. Infections in preemies can be very dangerous because their bodies aren’t capable of fighting one off! However, infections are pretty rare in the NICU because there are procedures in place and protocol to follow. No one is 100% capable of preventing an infection, but tell me why some nurses don’t follow protocol?? They’ve put my baby at a greater risk for infection! He’s had nurses handle him and touch the tubes and IVs without gloves on! He had one nurse wear gloves but then calculate his dosage of medication on her cell phone and then touch his PICC line! One nurse was hanging his IV nutrition (a process in the day when he is most vulnerable, so much so that they have to wear surgical masks) and she didn’t keep her mask on! Some of his nurses have had “allergies”, another tried calling in sick, and I can keep giving examples! Gabriel could’ve gotten his “possible infection” from any of those situations and what makes me the most mad is that it’s all human error! Simple things that could have and should have prevented an infection in my Gabriel. I’m pissed and have gotten over my hesitancy to say something. Watch out.

Yesterday was the first day that my helplessness overwhelmed me. Neither my mom or I could sit next to him on his ventilator for much longer feeling so awful. We were both antsy, upset, and I felt like I needed to do something productive for Gabriel. On a daily basis, I pump and store breast milk for him…that’s how I feel like I’m doing something helpful. The big joke in the NICU is how much milk I have frozen here, but that’s ALL I can do for him. That just wasn’t cutting it yesterday though. So we left for a couple of hours and I bought him a mobile for when he moves to an “open crib” in the NICU and then organized some more of his room. After a day filled with compensating for helplessness, I got to end it with the most precious baby laying on my chest.

Tomorrow is Gabriel’s second neurosonogram. I’m having anxiety over it and yet still dealing with my anger from yesterday. Its gonna be a big week for us.

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One Response to Roller Coaster

  1. MoDLin says:

    I’m so sorry you and Gabriel are on the NICU roller coaster. It’s so incredibly hard to take a step back. I understand your anger and frustration, too. And I remember the absolute joy of kagarooo care. I’m wishing you better days soon.

    If you would like to connect with other parents of preemies, try visiting the March of Dimes community called Share Your Story: Many parents have found it hugely supportive.

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