Alright so after this I'll be done with the flashbacks to Edison world but I figured I owed it to myself and eventually Edison to document some of what happened the first few miraculous days of his life.
I would like to first mention that the St. Luke's NICU is the most amazing place. I truly could not and would not have imagined being anywhere
else.
There were a lot more details of the day Edison was born. For one I had a friend from my service sorority show up with a gift from the chapter since I was going to be on bed rest for so long. We chatted for a couple of minutes and then I said.. oh yeah by the way I had the baby! It was kindof funny. And I must have looked pretty good if it wasn't obvious. That or the whole pregnancy I looked really awful. hmmmm. The poor poor woman. The combination of exhaustion, both physical and mental, the magnesium sulfate and the morphine decided to take effect and while sitting there I all of the sudden felt rather ill. I pushed the nurse button, tried to politely excuse myself for a second as I turned the other way and turned into a geyser of post delivery vomit. It was honestly just the ice chips I had eaten since that's all I was allowed to eat. So add that to the mix.. I was parched so I probably downed way too many ice chips too fast. I was only allowed a ridiculously low number like a quarter cup an hour. They just didn't know me and my water consumption habits very well. Anyway... In between dry heaves I told my friend she certainly didn't need to stay around to observe and thanked her and went back to it.
Now, I am not a fan of throwing up on a normal basis. I generally like to avoid it. Throwing up after MAJOR ABDOMINAL SURGERY... I can't even begin to explain it. Thank goodness I think there was still some of the epidural and morphine working in the system. I ended up doing the same thing later but at least anticipated it sooner. poor nurses. I really have the highest respect for them.
The next day I was doing really well and my blood pressure was back down to normal early on so they took me off the mag sulfate early at 6 am. So around 11 I was able to go see my son. Standing up after not moving a
t all for more than a day and surgery is a strange sensation. Add in the fact I hadn't eaten anything since the previous morning and had thrown up anything that could possibly have been there and I was actually dizzy and needed t
o take my standing attempt very slow. I made it to the chair and Paco wheeled me up.
I don't know why but I was just so nervous. How silly is it to be nervous to see your baby? I think I was afraid of what he could look like all hooked up to stuff and not knowing what his condition really was. I saw him and it took all of .06 seconds to 1. love him more than I thought possible and 2. realize everyone was so right. He was so small there are no words or comparisons to make that can help anyone visualize it. All I could do was open his little porthole on the incubator and hold his tiny hand and tell him I was there. His whole hand barely made it past the length of my nail. On recommendation from the nurses downstairs I wasn't really allowed to stay upstairs for more than 30 minutes. So after what seemed like only 2 minutes Paco was wheeling me back downstairs. We stopped to grab lunch and went to the room until I was able to go back up again later.
The next day I was actually able to hold him I was able to do kangaroo care which is skin to skin contact with him laying on my chest. I was also scared for this. He was so small. so fragile. so foreign. I was amazed how quickly I adjusted to having this tiny thing on my chest. He was my baby and for a whole glorious hour he was mine. Just him and me sitting. He hated going back to the incubator. I hated sending him, but it stresses them out and uses a lot of energy to be out for too long.
So began our life in the NICU. I stayed in the hospital for 4 days on top of delivery day instead of the standard 3 so I could recover a little more and be close to Edison. Mom and Paco took turns staying overnight with me and I spent my days with visitors, making the trek upstairs getting progressively faster on foot, and pumping. I only mention the pumping because it has been the bane of my existence ever since. When you have a very preterm baby in the NICU breastfeeding doesn't happen. Some very strong and lucky women are able to pick up and breastfeed after not too much time and be successful. But if you asked, the vast majority would say it just didn't work out and they pumped milk for her baby. It is, afterall, the very best thing for any baby but especially a preemie. and I was damn determined to make it work better this time than with Lilly. Those first few days I was pumping every 2-3 hours like I was supposed to. Not much has changed actually...
In the first days it would also be understatement to say I had the baby blues that most women get. I remember at one point I was up at 2 am to pump. I got up... slowly, painfully... to go to the bathroom and I dropped my pen. Oh. my. god. you would have thought the world ended and I just lost my best friend and saw some sad homeless puppies or something. I just started crying. I know I did this a few more times but mostly kept it to myself.
We started to get into some kindof of flow to things after I went home from the hospital. Lilly and I would go in around 2 and then I would go back in the evening to just be there. Almost the second I got in the room every time the doctor or nurse would come in and give me updates on him. I would also call and let them know when I was coming or if I couldn't or just to see how his night went. It pained me so much that I couldn't be there with him. With Lilly at home it was just so different. If he were my only child I would have lived at the NICU.
We decided we needed to take some of those pictures that really show his size so I photocopied a dollar bill and held it up to him for comparison. We also did a FAST photoshoot with our backdrop taped to the wall after he had a bath. It would have been my biggest regret to not get a picture like this.
Most of the days were fantastic and we just had to remind ourselves that he was here and small but still perfect. He started off on a cpap machine which forces room air into his lungs just to make sure they stayed inflated. He had a couple of small patches in his left lung that hadn't yet opened so he didn't need oxygen, just enough air to keep a constant flow in his lungs. He HATED that with a fiery passion. The doctors agreed "6 of one, half a dozen of another" and took it off. At only 1 day old he was just like his father and refused to keep his mouth closed so
all of the air going in his nose was just coming out his mouth. They took that off and put him on vapotherm. It was also just room air but again a constant flow and was much less obtrusive than the cpap headpiece.
He had head ultrasounds to scan for brain damage, clear. He had x-rays and ultrasounds to check his heart, lungs, and PICC line. Lungs still needed to inflate more. His heart that the pinpoint hole that usually closes with a baby's first breath, and the PICC line was still in his umbilical cord delivering essential nutrients and at the time antibiotics. (a PICC line is an IV that goes in through a vein all the way to the heart.) On his 7th day of life he had the PICC line changed to his foot. He had daily labs initially to check bilirubin levels, hemoglobin, and possible infections. He needed the bili lights on his 4th day and at about 15 days of life his oxygen levels kept dropping. He needed to be put on oxygen.
The annoying thing about oxygen is that when you need it you need it. Unfortunately it is toxic in higher doses. So for a baby whose lungs aren't developed it is actually breaking them down at a faster rate than they are healing. Because of this he was on oxygen after 2 weeks and stayed on it until right before he went home. He was actually going to be all set to go home on tanks and monitors. He must have heard the conversation though because the very next day the nurse Melissa took him off and he stayed off.
Edison had episodes called brady attacks and apnea where the brain currents weren't connecting so he would 'forget' to breath for a few seconds. Usually he pulled himself out of it and took a deep breath. Other times the nurses came running in to give him a nudge to get him to take a breath. Those first few days experiencing that was the scariest thing. Especially if he did it while I was holding him. After a while I was able to see the signs before he did it and I could either prevent it or just make sure he was okay. They got less and less frequent and less severe.
Another hurdle we had to deal with was Edisons oxygen levels and hemoglobin. Edison was always a "feisty one" as the nurses said. He was really quite alert and let everyone know when he was pissed off or just wanting to move. He was always squirming around in his incubator. One day I noticed he wasn't as energetic and then sure enough the next day we got blood test results back. His hemoglobin was very low. His hematocrit was higher though. So while his body wasn't carrying oxygen the way it needed to, he was at least regenerating his own red blood cells. It was just a matter of seeing if he could generate them fast enough to keep up. It took a few days of re-testing to find out it just wasn't where it needed to be. He had to get a blood transfusion.
I was having a terrible day and then I got this phone call and regressed to weepy Erica for a day I believe. I knew it wasn't a huge deal. But he is my baby. My one month old isn't supposed to have a blood transfusion. He was fine, obviously, and perked up a little. He did get color though. I didn't realize how pale he had gotten until he got his color back.
My little man gained weight like a champ and started to eat pretty well. He started to breastfeed and after the initial trials he started to do really well. He preferred it to the bottle but since he was going to go home on Neosure supplemented bottles he needed to keep practicing with the bottles. I had a lot of hope that he would breastfeed before they told me he needed to have at least 5 bottles a day. That's a lot in the general scheme of things. The day he was discharged I got mastitis also. That put a damper on it too. I recovered and it just became easier to pump to make sure it didn't happen again. (even though it did anyway a month later). I will point out that I am still pumping and have pumped a total of 2900 ounces of milk in his 4 months of life. The kid is set.
Everyday we were in the NICU I was reminded of how lucky we were. Lucky that our little guy was as healthy as he was. Lucky that he was there at all. Lucky that we weren't going to be there as long as others had been or needed to be. Although we were definitely the 3rd longest residents by the time we left. I saw more babies and families come and go from our pod while we were there. We are also so thankful for the amazing staff. I wouldn't have trusted him to be anywhere else. We generally formed relationships with the nurses and were sad that we wouldn't see them on a daily basis. Seriously, I saw and talked to them more than a lot of my friends since my life revolved around Lilly at home, Edison at the hospital, and pumping all in between. We still miss them and look forward to hopefully seeing some when Edison has his followup visit.
All in all Edison has turned out perfect. He went home at 5 pounds 11.7 ounces and at his 4 month appointment he weight 9 pounds even. Huge to us, smaller than some newborns.
There was obviously so much more detail in those 10 weeks (68 days) but I would need to spend a week catching up. So that synopsis will have to do.
Now on to normal life. Considering we're essentially on house arrest until the RSV season is over we don't have a lot in the lines of exciting happenings. But Lilly is entertaining enough to make up for it. I will make sure to post her most current craziness and shenanigans... darn kid.
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