Before he was even two hours old, Tomas was already off on his first helicopter ride from our community hospital to the Mayo clinic and the waiting NICU. If you haven't already, be sure to read Tomas' birth story leading up to this part of his first two weeks of life. Here are all the day by day details for your perusal!
Birth Day- Day 0
From the time the helicopter left, Tim hopped in the car and drove (on 24 hours awake and hours since he had eaten anything) to Rochester to be with Tomas. Before I was even out of recovery, he called my friend Jamie and woke her up at 4:00 in the morning so that she could come and be with me.
My day was pretty straight forward and focused on getting out of bed, rid of IVs and other tubes and wires, and getting myself OUT of the hospital as soon as possible. Jamie stayed with me all day and when I was discharged around 8:00, she drove me to Rochester to be with Tim and Tomas.
Tomas was put on CPAP for transfer to Mayo and then intubated upon arrival. He had a dose of surfactant through his intubation tube and was quickly able to transferred back to the CPAP and no longer needed any additional oxygen. Daddy was able to hold him and made sure he had his Siena blanket with him (go me remembering to send it along!).
One of the toughest moments for me on this day was getting this picture through text. Earlier this year a very special little girl opened one eye, just like this, and looked at me for only a moment. Truth be told, Tomas looks nothing like Siena but this picture broke my heart just a little bit.
Towards the end of the day, his IV was moved from his umbilical cord to his head. He was also able to come off of the CPAP and see how he did without any extra breathing assistance. During this time, I arrived at the hospital and immediately sank into a chair and held him for close to 4 hours!
Over his first night, Tomas started retracting again and needed to be placed back on CPAP. He was still able to stay on room air, with just that little bit of extra pressure needed to keep his lungs from getting too sticky.
He also gained a fair amount of weight and was given a dose of lasix to reduce fluid retention. I didn't really realize it at the time, but looking back at pictures he really was quite puffy. He also continued antibiotics (standard for 48 hours until initial blood cultures came back) and moved from effectively sugar water (D10 they call it I think) to TPN & Lipids for nutrition.
One of the things we learned about the NICU is that they do a lot of moving around of babies in order to accommodate good nursing pairs. We were temporarily moved into the feeder grower room (the Mayo NICU has 4 different rooms, each holding 6-8 I think) on Day 1. The biggest highlight of day 1, however, was getting to meet his siblings, my mom, and our friend Leigh for just a brief moment each. We also had a visit from Father John who baptized and confirmed big sister, Siena.
Day 2, we were back to our original bed spot. CPAP continued, occasionally needing to increase his oxygen. This felt a lot like moving backwards to us. He seemed to need more breathing support each day. The CPAP was also very uncomfortable to him and it often seemed as though he was more comfortable not being held which was hard for mommy especially. This day he also started getting breastmilk through his feeding tube. (I will write more about our pumping adventures in another post.) Cultures officially came back clean today so no more antibiotics.
Our visitor today was Jamie who helped mommy out so much on the birthday day.
Overnight Tomas' head IV went bad and he had to get a new one in his arm, which was even less comfortable looking. He continued to be uncomfortable being held and didn't like to be held by anyone other than mom or dad. Medically everything was fairly status quo- CPAP with room air plus a little extra oxygen as needed. He had a second dose of lasix (which seemed to be a big turning point for him) and we continued a combination of TPN/Lipids and tube feedings with breastmilk.
Visitors were Tim's mom, Leigh, and Aidan. Aidan brought his stuffed elephant from home.
This was Wednesday night and this was the hardest day for mom and dad. During the day, I had a bit of a meltdown at the nurses. The set up at the NICU was not family friendly at all and I felt like we were on display all day. I had to leave every time I pumped and every time we ate and every time we slept and I felt like no one really needed or wanted us there. To this point, we were also driving home each night taking a lot of time away from Tomas and from the little sleep we were getting. For the previous three days I admit we had eaten very little and that was probably catching up with us. I forgot my pump in Rochester when we left and had a slight crisis. That crisis resolved, I realized that my feet and calves were completely swollen and I had what can only be described as an outright panic attack about the whole thing. Poor Tim slept half sitting up on the living room floor because every time he walked away from me I started shaking again. We didn't get much sleep at all that night.
After his second dose of lasix on Wednesday, Tomas started doing much, much better. They also switched his CPAP nose piece to a different size and that seemed to help him feel more comfortable even with it on. We were finally able to start spending more time holding our sweet boy. The goal for the day was to wean his CPAP to a lower pressure and then possibly take it off completely.
During the afternoon, we got word we would be moving to one of the isolation rooms (reserved for the sicker babies and those who are learning to breastfeed) back in the feeder/grower room. The isolation rooms were still small and not designed for 24 hour rooming in but we were grateful for the privacy.
During the morning we were visited by Tomas' godfather-to-be, Pete and one of his sons (he has 6!).
Our evening nurse on Day 4 was Tomas' number one champion of the NICU. First of all she insisted on a bath, which he absolutely hated with a passion.
During the process of his bath, however, his CPAP "hat" got wet and needed to be replaced and then he blew his IV again. He had been on the lower pressure CPAP for awhile and she just announced that she was going to tell the Dr. that we should just take it off. She said the same thing about the IV. He was at about 50/50 TPN to breastmilk feeds and she was just absolutely sure that we could wait to put it back in because he didn't need it anymore. He came off the CPAP and IV and never went back on either.
Amidst all of this, we got a call that we had moved up the waiting list and had a room at the Ronald McDonald House. This meant five minutes to a bed instead of 45 each night. Everyone had said from day one that there would be a magical day when things started to come together. This was definitely *that* day from my perspective.
The one downside was that Tomas' bilirubin came back borderline high today and we had to start lights. Thank fully the NICU doctors remained the voices of reason and were willing to allow us to do lights only when we weren't holding Tomas.
I was worried that coming in this morning we would find that the CPAP or IV was back or that he was on supplemental oxygen. Tomas was not having any of that, however, and was rocking his less restrictive equipment. In fact, the only change of the morning was his feeding tube was moved from his mouth to his nose.
All along, we had been talking about the possibility of moving down to the level 2 nursery once Tomas was off of all breathing support. The minimum was supposed to be 24 hours off of all oxygen and breathing support. When the doctor mentioned it during morning rounds, I thought we were talking about maybe the next day or so. Imagine my surprise when he says all they needed to do was check with the transport team and see when they were available!
Around 2:00 in the afternoon, Tomas and mommy hopped in an ambulance (how does my purse look on that paramedic?) for a quick ride across town to the hospital where Siena was born. The atmosphere at the ISCN (or step down nursery or level 2 NICU) was very different than the NICU. We had a private room with a couch for me to sleep on. We also had our own fridge and didn't have to leave to eat any longer. I could pump sitting right next to his bed. Within the first half hour, someone had brought ME a big jug of water and I had been visited by a lactation consultant who watched me pump and helped me with a few things there.
We had another visit from Leigh today, along with her kids Sean and Eva, and big sister Kylee got to be the first sibling to hold him. Tomas was able to wear his own clothes for the first time.
As much as our stay in the ISCN started off well, I have to admit that things got a little rocky here. Some of the things that we had worked out with the NICU staff (such as keeping his fluid volume at the lower limit in order to minimize any supplementation that wasn't breastmilk, keeping bilirubin lights minimal, and what the discharge requirements were) did not transfer the way I thought that they would. Over the rest of our stay, this was almost a daily disagreement between myself and the nursing staff. I apparently made two nurses cry because I was so adamantly opposed to any extra formula and they felt like they were following the charted orders (to be fair they were). To be fair to me, my hormones were completely crazy and it was my issue to be emotionally invested in, not theirs.
I had a terrible time with the constant application of equations and "standards" to decide what was good for Tomas. I felt like (and still feel) like standards of care are good places to start but that responsible medicine approach is to pay attention to the baby (novel concept apparently). With the shifting staff over the weekend I felt like I was constantly re-explaining myself to a new person. At one point the NP asked if I knew we could leave AMA if I thought that I could do better at home without them. I asked her right back if she would then proceed to call social services and she all but admitted that she would.
Keeping me sane throughout this initial transition were our weekend visitors. My parents came and got a hotel near the hospital and the kids all came up for the weekend. They were able to swim with my parents and have time at the Ronald McDonald House in the various game and play rooms which was much needed for all of them I think. Caleb was highly impressed by the amount of food available to him :) We were also able to finally get a picture of all 8 of us!
Jamie visited again (this time with her daughter Ayanna- who was the first and still only non related kid to hold Tomas) and Tim's sister came to visit on Sunday afternoon. She brought me Jimmy Johns...the same sandwich she brought me after Siena was born.
Sunday morning, Tomas' bilirubin came back much better and we were able to stop lights.
Monday Tim and I got serious about insisting on discharge guidelines and a timelines. Overnight Sunday into Monday Tomas was moved from the big isolette/hospital bed to a regular bassinet. We had a homeschooling mom as our evening nurse and she helped us get through our education requirements. We also did another bath and it went much better this time. Super nurse let us hold him for a little while after his bath without any monitors attached. What a blessing for us.
One of the discharge requirements was 24 hours with no tube feeds and another one was that he had to be gaining weight (this was one of the differences with the NICU- they said he had to be maintaining his weight). When it was time for his evening weight, he was down 10 grams so we decided to give him a break overnight and do tube feedings so that he could rest for the next day of all bottles.
We spent today really focusing on bottles. We knew that we had to pass a carseat test before going home so we asked to do that during the afternoon, even though Wednesday morning was the earliest we could go home with the 24 hour requirement. It turns out that's another no-no. It turns out, they "prefer" to have the 24 hours first, then take out the feeding tube, and then do the carseat test.
I wondered why they couldn't simply replace the feeding tube if they needed to at a later time?
I'm pretty sure that I only won this argument because at this point they wanted to get rid of me more than they cared about their perfectly followed charts and guidelines. I don't get the impression that people question them all that often.
Unfortunately, we did not win on the carseat test. Almost as soon as he went in, he started have dips in his o2 and overall lasted less than 15 minutes before being taken out. As much as I was upset about this, I was mostly ok because who wants to bring their baby home if they can't sit safely in the carseat? I knew I could feed the boy just fine if left to our own devices but I couldn't avoid the car ride home.
The bonus news of this day was that Tomas was up 60 grams at his evening weight. That meant I stayed the night and worked hard to make sure he was getting both enough rest and getting his bottles to meet their minimum intake requirements.
We met our 24 hours on oral feeds with intake and weight gain requirements at 8:00 on Wednesday morning. Unfortunately we still had to wait to repeat the carseat test until 3:00 in the afternoon.
We had all of our ducks in a row and then he failed again. He did much better, lasting 45 minutes with only 2 short desaturations which he recovered on his own (the previous day, he just kept going down), but it was still a fail.
Oh I did not think I would survive this disappointment! Honestly, I think they were a little bit worried about the same thing. At one point we had 2 nurses, an NP, a social worker, and a carseat tech all packed into our room trouble shooting. Everyone agreed he had a good fit in a good seat and since he hadn't had any o2 issues since we came to the ISCN on Day 5 they weren't sure of the problem. Everyone was trying to keep me calm and talk options, frequently acknowledging that yes he was clearly ready to be home in every other way.
I thought our best option would be to purchase a car bed seat and argue to repeat the carseat test the same night ("policy" said we had to wait 24 hours even using a different seat). The tech and nurses seemed to agree with me, but we had to wait for the NP to sign off and she couldn't sign off on exceptions until she talked with the neonatologist.
When she came in to talk to us, I promised myself I would remain calm and speak rationally. I said my biggest concern was that my milk supply was really tanking and already low and that I was concerned that staying with no guarantee that he would even pass in the next day or two might have serious long term consequences to his ability to be breastfed. Even as much as I believe that we have formula for good reasons, we have had some health issues in our babies that make me hesitant to do something that would potentially impact breastfeeding negatively long term. I calmly stated my case for the car bed and redoing the test the same night.
This is where all of the prayers people had been saying over this carseat test showed themselves.
It turns out the NP and neonatologist had discussed it and felt that with where we live (closer than that 45 minutes) and the fact that everyone agreed on the seat fit, etc. they felt we could go home in the seat that we had. The kicker was that they wanted an adult to ride in the backseat with him for the next 2-4 weeks and they didn't want us using his seat for anything other than appointments/weight checks and Mass (ok, I asked about that one and she said of course) Then they wrote a very funny legal disclaimer in our discharge notes about how standard recommendation would have been to stay and the restrictions they recommended (I even ended up getting the Mass part in writing). Our pediatrician was very amused.
Just like our transfer from the NICU to the ISCN, once they decided we were good to go everything just kind of happened. The feelings of relief and shock and all of that were strong and overwhelming. I felt like I was in a state of disbelief! I was so surprised by their decision that I didn't even care it was after 8:00 by the time we got home. Most of the kids were asleep and didn't even know we got home until the next morning.
Our final "health" chapter in coming home is to grow enough that makes our carseat safe and to transition to full time breastmilk and then (hopefully) full breastfeeding eventually.
I will share our pumping adventures in a post of its own!