setbacks

I don’t know how to start or even write this post without feeling sad, guilty, selfish. You see, Estelle has been doing incredibly well. She is breathing on her own, she is taking all of her bottles (slowly but completely), and she is holding her temperature. These are all things she needs to do to go home. Great, right? Kind of.

I’ve tried not to set expectations while we’ve been here, such as “I think we’ll go home next weekend” or “Maybe we’ll be out by Wednesday.” It leads to heartache and disappointment. I’ve just been going through the motions these last two weeks. Waking up every 3 hours to pump milk, getting up at 7 am, eating breakfast, coming to the hospital, holding Estelle, feeding Estelle, changing/bathing Estelle, going home to eat and sleep, and then starting all over again. It has become so routine that I honestly haven’t thought twice about it. I had a purpose and each day there was something new to tackle.

Over the last week, she has been holding her temperature extremely well in her isolette. Honestly, sometimes it feels colder in there than it does in the room. Saturday, our doctor let us know that they would be weaning Estelle to an open crib starting that night – our last step before she can come home. She has to maintain a temperature of 97.9 degrees or higher for 48 hours in an open crib, while continuing to take her bottles, and she is all ours. This would have her in our car, headed for our house, Tuesday night. We were so excited. It was really happening. We were going to bring our baby home. We had been warned that her feeding may suffer once placed in the open crib due to her using all her energy to stay warm. We had been warned that she may not hold her temperature at all. We didn’t care, we were elated.

We left her Saturday night all swaddled up and snoozing in her open crib. We woke up Sunday with renewed energy and starting putting some finishing touches on her nursery and our home. We made a plan to get our car seats checked this week and to do any last minute errands that needed to be done before she got home. It was go time.

As we pulled into the Woman’s Hospital parking lot, my phone rang. It was her doctor. She let me know that Estelle had not done well in the open crib and that in the middle of the night she had to be put back in her isolette. I was heartbroken. Again. She told me it would be another few days before we could try again. I hung up with her and for the first time since my doctor told me she would be staying in the hospital when I was in labor, I cried. Like, really cried. Ugly cried. I curled my knees into my chest and just wept. All these feelings started creeping back in, the helplessness, the uncertainty. Would we EVER bring our baby home? Kevin sat there feeling sad as well, but in that moment I couldn’t comfort him. I couldn’t even comfort myself.

We walked up to her room and sat down. I felt so out of it. The exhaustion that I had been brushing off for two weeks was hitting me suddenly, my face was swollen, and I just didn’t know how to feel. The doctor stopped by to check in on us and I asked her to explain exactly what happened. She wasn’t sure, so she had the nurse check the notes, and it looked like her temperature had gotten to 97.4 and the night nurse decided to put her back in the isolette. That was it.

There are so many things about this specific frustrating conversation that I won’t divulge. I will say that, for the most part, we have had a great experience with the doctors and nurses in the NICU, so I don’t want to be negative. However, there have been instances of missed communication that have left me with some anxiety. While this is frustrating, I have to remember that we are all human here and we all make human mistakes. It’s just that when you trust someone to make all the exact right decisions for your baby to be healthy and to come home, you want less human error and more patience than normal.

Regardless, here we are. She can’t start the open air trial again until Tuesday and the 48 hour clock will start again. This is assuming her doctor will clear her to begin the open air trial on Tuesday. I want to be excited, but I can’t because I don’t want to open my heart to more sadness. Right now, I just feel like we’ll never leave this place and everyone around us keeps moving on with their lives and I’m sitting here with my baby in the NICU.

Also, I look around at other babies here and realize that there are some families who truly have no end in sight and that’s when the guilt creeps back in. I don’t want to dismiss my feelings, because they are real, but so are the ones of the other mothers here who have early and sick babies.

I wish I could end this post on a positive note, but today I’m not feeling so positive. Today I’m just trying to make it through. The good news is that Estelle is healthy and seems pretty happy bundled up in the isolette sleeping, so I have that to be thankful for that. In fact, she’s so cozy that they had to take her clothes off because she was too warm (which is frustrating because she was placed back in it for being too cold). This is a strange and winding road. Hopefully we will get to the end of it sooner than later.