Part One, Part Two, Part Three, Part Four here.
After the bili-lights were not necessary (his jaundice levels were finally getting lower), we would just hold and hold and hold him as much as we could. We were always restricted before with the amount of time.
When people saw him at this stage in the hospital (after about a week or week and a half), they thought there was nothing wrong except being a little small, I guess except he looked orange from the jaundice too. He was so sleepy (partly the jaundice, partly a newborn, partly a preemie newborn), he didn’t have the strength to feed himself. This was the last hurdle we had to get through and get him out of the hospital and it took a 7-10 days just to do this. The breathing on his own, the regulating his own body temperature, the jaundice, then this.
This is what he would do:
1,2 suck, rest. 1,2,3, suck rest. 1,2,3,4,5,6, suck, fall asleep, cold washcloth. Try more. Still asleep. More cold washcloth, still asleep. Get tube fed. He was required to have a certain amount (weight or ounces) of milk a day. The nurse would weigh him, he would get a bottle or try breastfeeding, then get weighed again. The amount that he took in would be measured and subtracted from how much he needed to take each feeding. I can’t remember exactly, but if he needed 45 mL, and he only took 10 mL from a bottle/breast, he would get the other 35 mL through a tube.
Eight feedings a day.
He worked up to his first feeding by himself, which seemed like it took forever. Then, the second, third and forth, again pretty slowly. Over days he would increase by maybe one feeding a day, sometimes revert to a lower number. Then, they started preparing us for home. The more he milk he would get, the stronger he got, the older he got… Then, If I remember this right, he went from 6 feedings to 8 in one day. He was ready to come home!
Boy we we scared then!
He was born on March 19th and came home on April 4th, which also happens to be our first date anniversary between Lance and I. 16 days in the hospital. I admit I was very nervous. I had round the clock care with very experienced nurses and doctors and monitors. 24 hours a day monitors that monitored everything. But, one thing I did find out was when I was ready to go home and leave the hospital behind. He was hooked up to all these things and was “required" to be on them even when we knew we were going home the next day or two. Those darn monitors were malfunctioning and by this point, I knew every bell and whistle and knew when the probe just needed to be adjusted and how to silence the alarms. I remember telling the nurse to either she could take them all off, or I would. We were going home the next day and there were not going to be monitors there for crying out loud. 
We took him home and I sat next to him the whole way. Staring at him, the whole way. I distinctly remember coming into our driveway and carefully taking his car seat out for the first time. Lance carried him inside, we opened the door and Lance looked at me and asked “what do we do now?” We both looked at each other, paused and laughed. It had been such a roller coaster of a ride these past 16 days. I looked at him and just said “I think I will just hold him”. And I did.
Our dogs hadn’t met him yet, so they got to meet him. There was no way in hell that I was going to put him in another room and sleep in a crib, so we quickly figured out that he was sleeping in our bed, with us. We stayed awake or very lightly asleep that first night, just like normal first time parents. Watched him breathing.
It was very challenging at first to be home. He was on fortified (extra calorie) formula mixed with breast milk I was pumping. Which meant I had to get up, feed him (which was not easy as he needed lots of help at first breastfeeding), pump extra milk, put it in the fridge for later, clean everything up for the next feeding, change his diapers, etc. It was a lot of work. A few tips/tricks that helped me (at least the ones I remember from 5 years ago):
--- A dimmer in the room so that you don’t have to have the lights fully on in the middle of the night. This helped me tons during breastfeeding since it was very difficult for me to see in pitch black, and I needed to position him just right since he couldn’t do this for himself. Preemie breastfeeding is not for the faint of heart, it is hard work, but within about 3 weeks I think both he and I got the hang of it. With help from the Lactation center, of course.
--- A cooler in the pumping room so I didn’t have to go downstairs in the middle of the night
--- Put the pump parts in the cooler for the next pumping, they’ll stay fresh there and you don’t have to wash them 8 times a day. Or buy extra parts and wash them in the morning. At least 3-4 extra sets, of everything.
--- Sleep as long as you can in the morning. Once you get up, it’s hard to take a nap later in the day since you feel the need to “do” things. If they wake up at 6 am, go back to sleep (obviously), and when they wake up at ~9am, go back to sleep after that too. Only wake up and get up when you are ready to.
One thing I haven’t talked about yet was once I was discarded from the hospital - where I would stay at night. That first night was absolutely horrible. I had the choice to stay in his private room and sleep on the pull out bed/couch. With all the beeps, noises, other people coming in/out, etc. The nurses strongly encouraged me to go home. Lance wanted me to come home.
But, my baby was here at the hospital. My baby.
How on earth could I sleep at home? I felt so terribly guilty, like the absolute worst mother in the world when I made the choice to go home. I think the only reason I did go home was they told me I would sleep better and hence heal faster. I did not sleep well that night and tossed and turned thinking about my baby in the hospital and how I chose to go home to sleep. But, I did get over it eventually and I think it was OK. To all the other mothers out there, it is OK. But, it is so so so very hard. Try what is best for you and if it isn’t working, switch it. I did stay his last night in the hospital and that felt good, albeit tiring.
There have not been many (any?) lasting effects of Alex being born prematurely. He was age adjusted for maybe the first year at the doctors office (where they take your baby’s real due date and use that date. For example, Alex was 2 months old, but only age adjusted to 2 weeks old since he was born 6 weeks early). He was very small for a while and didn’t hit 10 lbs. for months. By the time he was 5 or 6 months old (not adjusted), he was catching up nicely. He was getting bigger, his eyes had lost that preemie look, he was doing most of what other 5 or 6 month old babies were doing. I stopped adjusting him at that point. There are other babies that are born 3 months early, and those babies are adjusted until they are ~ 2 years old.
His lungs have not had any lasting effects, thank goodness. He did have an inguinal hernia and surgery, but he could have had that anyways.
There are so many scary stories out there about learning problems, developmental delays, etc. Luckily, Alex is now a perfectly healthy 5 year old boy.
It’s been fun and so difficult to look back 5 years ago, thank you for joining me and all of your comments. It has been very helpful for me to remember and make sense of what all this means to me. It has been very therapeutic and it is literally like a weight has been lifted off my shoulders. I told Sara’s birth story (part one and part two and part three here) and wanted to do the same for Alex for a long time.
I guess I finally got the courage to go back and just do it.
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