Over the course of our NICU stay, we dealt with a lot of obstacles. One of the greatest, non medical, challenges we faced was bringing one baby home while the other was transferred to another hospital. Addison needed to be transferred at 40 weeks for a consult for a Nissan Fundo & G-tube, Blake would be coming home….just a few short days after my EDD. I am very unbelievably fortunate with the timing of it all, in hindsight.
Our “home” NICU team of Neo’s all worked at the “new” NICU, which meant with the exception of a few doctors, I’d have some consistency. The doctor’s coordinated things for me so that Addison would be transferred and placed under the care of the Neo who admitted her to the NICU the day she was born and also spent several weeks with Addison throughout our stay. I knew after that, it would be a different Neo but prayed it would be one who knew her well. But what would I do without these nurses, our“family”, would the new nurses treat me like I have no clue what to do with Addison? Or would they be just as kind and loving and more important would they love Addison like her “home” nurses do?
Day 104 – I arrived at the hospital by 7am (the start of day shift) and waited for the transport team to arrive. While I waited I cuddled Addison and told her that it was really important that she behave herself during her first car ride. I also reminded Blake that I would be back later that night to room in, and that it was equally important that he behaved so he could “go to the zoo” the next day. (Another TB mom shared with me this cute phrase used as code for coming home, because we all know if these preemies here the “H” word they get all funny on us.) I was a nervous wreck because I was told I wouldn’t be able to ride with Addison to UMMS. I’d have to follow behind in a car, but I could at the very least walk her out and watch them load her up. That I did…
Our first day at UMMS was less then exciting. I met her nurse, I got a big hug from Dr. D (the Neo attending) and she introduced me to“Addison’s team”. At UMMS they have two teams and two Neo’s attending (the NP Team and the Resident Team) Addison was assigned to the residents. I basically spent 8 hours at Addison’s bedside while they got her settled, vitals, diapers, forms, etc. I made sure that Blake would be able to come back and visit with us, over and over again. I left that day around 4pm in hopes of going home to nap before going to camp out with Blake.
Initially I think the first few days of the transition went very well. I was beyond amazed when within the week they were able to take Addison off the cannula, despite our “home” NICU’s failed attempts. I prayed that maybe we wouldn’t need that surgery after all. On the afternoon of May 27thwe brought home Blake. As much as I wanted to be in two places at once we all agreed that we would spend the first night and the following day with Blake, getting in to some kind of routine and getting to know him without the nurses around. We managed to survive our first 24 hours and the next day we went to visit Addison.
Because of the weekend, etc not a whole lot in the terms of consults etc was happening at the hospital. In fact the ball really didn’t start rolling with Addison until the following week, after we had yet another family meeting to discuss a plan of care. The new hospital meant new visitor rules, ok well not “new” but with a baby at home “different” rules. In the first NICU because we had twins, each baby was allowed 2 visitors, meaning 4 total (me, hubby and 2 others). In this NICU it was still 2 but only one baby so me and hubby (and fortunately Blake). Bath time at this NICU was 2pm, where it was 9pm at the first NICU. Hubby missed a lot of baths, and I did too most of the time. There were new nurses, and a few new doctors, and trying to explain to them what “worked” for Addison didn’t always go over so well. I also went from a hospital with a weekly support group, to nothing really, at a time when I probably needed it most.
Meanwhile life at home with Blake was busy too…
My days consisted of feedings at Midnight, 3am, 6am, and9am, then a quick shower while Blake napped and then we loaded up to head to visit Addison while my husband worked. I was usually at the NICU in time for rounds and would stay as long as Blake would tolerate, usually this was 3 hours if I was lucky. Juggling spending time with Addison all while being Blake’s primary provider was a challenge. Most of the time, sadly, I was just “there”.Home by dinner time, quick dinner and then hubby and I would load up Blake and head back to visit from 7-9pm. Then it was bedtime, and “listen to Blake babble.” He got these crazy ideas that he needed to talk to us in the middle of the night. It was cute but man did we need to sleep, despite what Blake thought.
This went on for almost TWO WHOLE MONTHS. I don’t know how I survived some days. Blake had appointments with the Ped, OT, PT, a home health nurse, NICU follow ups, the eye doctor, you name it. I made it work somehow; you just do because you have to. I remember crying sooo hard the day Addison was transferred and the day Blake came home. It didn’t matter how happy I was to bring Blake home, I was heartbroken to leave Addison behind, I was heartbroken to leave behind the doctors and nurse who kept my babies alive. These amazing people taught me how to take care of my little ones, would I be able to do it without them? What if Blake’s monitor went off, would I remember what to do? I did, and I would.
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