We did this for 5 days. Addie started gaining weight, slowly. Which if you consider how much they were draining out of her head, it was impressive.
Her feeds were up to 120mls (4 ozs) at most and an average of 80mls most times. We did have an upsetting feed one night where she basically threw everything back up. We think she overate. They were adding powdered formula to my expressed breast milk and she didn't like it very well. They started her back on antibiotics because they didn't like the way her incisions were looking, though the neurosugeon's PA said they looked great to them.
Jack shared his monkey with Addie, so she would have something to look at.
On Monday, May 31st, she had her follow up MRI. This was supposed to save us an extra outpatient MRI and visit to George's office. The idea was to get it done while she was still in the hospital to make it easier on her and us. And it would've worked.
Adam and I visited late that night (my second visit of the day) and Dr. Dekowski was the one on call. He came to her bedside and I could tell by the look on his face that something wasn't quite right. I remember looking at her for reassurance that it couldn't be that bad. The MRI showed the shunt was working, the ventricles were smaller.... BUT there were new brain bleeds that had not been there on her first MRI. Dr. Dekowski was pretty frank about being puzzled about them. If she had been a preemie they wouldn't have been as surprised. The good news was that her bleeds were intercranial and not interventricular. Interventricular brain bleeds are bad for people with shunts because the blood junks up the shunt track, which causes the shunt to fail. Dr. Dekowski showed us the MRI. It felt very strange, following the neonatologist through the back STAFF only doors to view MRI images at midnight. The bleeds were very evident and looked large to my layman's eye. Dr. Dekowski had spoken to Dr. George, and George was perplexed as well. He did say he had seen it before, though rarely.
We spoke with Dr. Dekowski, standing in front of the computer with Addie's brain images pulled up, about her going home. She had lost weight that day, most likely because the sedation had made her sleepy and she had slept through her noon feeding. Dr. D said she could technically go home the next day but he wanted to see her back on the upswing weight wise. He hoped by Wednesday, June 1st.
I went back the next day for a feeding and to have some cuddle time. I brought the carseat carrier with me so they could do the car seat study. For those not familiar with that practice, Addie had to sit in her carseat for a certain number of minutes and they watched her vitals closely to make sure she could tolerate the position sitting in a car seat requires. The main concern with Addie regarding the carseat, was the size of her head potentially causing her to have trouble breathing. We didn't want any desats. She passed the test with flying colors that evening.
"What the heck is this thing?"
Adam and I went back again that night and I spoke to the neonatologist on call about Addie's care. I basically said that while we were extremely grateful for the level of care that Addison was receiving at St. David's, I was beginning to see where she would benefit from a consistent care giver. It seemed like we had a different nurse every shift. We had been bumped to a step down bay a few days before and she was at 1:4 nurse to patient ratio and we never saw the same nurse twice. I caught the nurses not following her feeding plan, using the wrong type of nipple on her bottles, etc. I was her mom. I was slowly gaining confidence in handling her and my mama bear instincts were starting to kick in. In the beginning, I very much had the attitude that they knew what was best for her medical care and that we would support (most of) anything they decided on. But we were so close to going home, and all we were waiting on was for her to gain weight. Neuro had released her with the understanding that we'd follow up with a MRI with contrast for the bleeds. And I was good at fattening up babies! I wanted her home. Where I could handle her needs. Her needs were needs I knew how to meet. And it changed my perspective. I got a little less patient with the doctors. I was nice... I'm always nice. The neonatologist after I was finished outlining my newfound position, basically said well done on handling it tactfully. I feel for the people that work in the NICU. I get that they are sometimes made out to be the bad guys and that was by no means my feelings. I was just ready to take care of my baby.
I went back the next day, June 1st, by myself, trying desperately not to get my hopes up. I had called at 1:30am to check on Addie, mainly to get an update on her midnight weight check. And she had GAINED!! I was thrilled and so cautiously optimistic as to what that meant. The neonatologist I had spoken with at length the day before had said even if she just held her own weight, she'd be happy. I was so scared to be hopeful but hope filled me nonetheless.
I scrubbed in for what I prayed would be the last time and went to sit at Addie's bedside. Her noon feed was coming up and I was ready with fresh milk!
The nurse, yet another new face, walked up and we were talking about her latest orders and notes etc. She mentioned her weight gain and I said that I knew, having called in the middle of the night. She told me she still didn't have a discharge order but she had been told she was going home that day. Sweet words to my ears.
I stayed all afternoon. Sat and held her. It was like I refused to put her down for fear they would change their minds. The one time I did put her down, she wasn't very happy. She was just as ready to come home as we were to have her there.
Not happy at being put back in her bed.
We had been asking about what we needed to do for discharge on our end for weeks and were told this day that we both had to take an infant CPR class before we could take her home. Nice to know on such short notice. Adam had just been there the day before and we could have done it then. I texted Adam, who was at work, if he could get off work to come do the class so we could take her home. He later told me he told his boss that if he wanted to stay married, he had to take a CPR class so we could bring Addie home that day.
He arrived around 3:30pm and we took the class at 4pm. Dr. Cho, another neonatologist came by and said we were good to go. He thanked us for making things easier on them, having all our appointments already set up and having the carseat study done already.
It was a little surreal. The feeling of freedom that comes after having to leave her behind so many times.
Her empty NICU bed.
She was ours now. Not a borrowed baby twice a day. My heart and mind knew that didn't make sense but it was kinda how I felt. We loaded her up in the carseat and Adam went down to pull the car around. Addie's nurse walked she and I and all her stuff down to the car and away we went. It was a fantastic feeling after spending months worrying if she would ever come home.
In her carseat, heading home!
Adam took me to Jimmy John's for a sandwich. I had been at the hospital all day and hadn't eaten at all. We sat in the car, in the parking lot, while Adam called his mom and I sent out a group to text to family and friends. We hit rush hour traffic on the way home and didn't care.
We arrived home to a decorated sign on the front door that mom and the boys had been working on all day.
As soon as the boys had heard Addie might be coming home, there was no nap taking for them.
Huge big brother grins!
Many pictures were taken and it was amazing how quickly we settled in.
I had my family of five. In the same room, at the same time for the first time that day. Grayson and Jackson finally got to lay eyes on her in person. Later that night, Jackson got to hold her, on the boppy while I sat beside him on the couch. Within seconds of me handing her to him, he said "She's too heavy!"
Grayson got to hold her the next day. I swear she recognized his voice. She was fussy and she settled for him immediately and went to sleep.