Meltdown

Today was a really tough day for me. Last night when he was weighed around midnight, he showed a gain of 3 grams. I was hoping for a lot more than that, but I didn't get upset. I knew he had gained a little more than that because the previous weigh-ins were done with a feeding tube and pulse oximeter. Last evening when I came back for his weigh-in and feeding, the nurse told me that he had removed his feeding tube (that went from his nose to his stomach) and his cannula. He removes his cannula All The Time. I often find it in his mouth. The doctors have said no more room air trials, but evidently Oliver didn't get the memo. He also had removed some of the leads to the monitor we'll be taking home. He has been hooked up to TWO monitors since Tuesday - yay for more wires (not). Last night the nurse got permission from the doctor on duty to not hook him back up to the second monitor (since it had proven that it worked just fine the previous 3 days) and to skip putting another feeding tube in since we hadn't been using the feeding tube for anything but his medications (iron once a day, vitamins once a day, sodium chloride every 6 hours, and diurel every 12 hours). Last night I started giving him his medications by mouth since the feeding tube was removed. I had to mix the NaCl in some of my milk to get him to take it, and even then he wasn't exactly thrilled. I weighed the pulse oximeter, and it weighs 3 grams so I figured he had gained at least 6 grams since the previous weigh-ins were done with that on. I wasn't sure exactly how much the feeding tube weighed.

The day Nadia was discharged she had lost 55 grams. She hadn't started gaining weight yet (was under her birth weight). The day before Ian was discharged he lost 50 grams, and the next morning I was told if he had gained *any* weight, he would be discharged. Through a nurse's extra efforts (weighing him on multiple scales, etc.), she was able to record a weight gain of 5 grams, and he was discharged (again below his birth weight). So I thought that since Oliver had gained a small amount two days in a row, they might discharge him. Nope. They want to see him gaining 18-36 grams a day. This morning they sent a different doctor to talk to me. She usually works in another NICU and is also a lactation expert. She seems like a really nice person, and she had empathy as she had preemie twins not that long ago. She suggested that we put his NG tube back in and give him supplements for a couple of days to get his weight up and then try again to get him to gain weight without supplements. The upside of this plan is that we would avoid the use of bottles, and the downside is that it would lengthen our stay in the NICU. After thinking about it a little bit, I told the nurse I'd rather just use bottles to supplement because at this point I don't want to do anything that might extend our stay in the NICU.

I then went to grab an early lunch, and while I was doing that the doctors did their rounds earlier than usual. I had intended to be there for them. The nurse told me that they wanted him to be weighed before and after I nursed him each time to see how much he was consuming and that I wasn't allowed to nurse him sooner than every 3 hours. This news put me over the edge, and I left the NICU sobbing. I tried calling Paul, but his phone was on vibrate. I came back in the NICU and a chaplain came over and talked and prayed with me. Then I was called into a meeting with a lactation nurse, social worker, and a doctor. They expressed concern that I'm not getting enough sleep. To appease them I said I'd check back into the Ronald McD House. I slept better last night as I did have a pillow and a blanket, but my back was rather sore from sleeping in a chair or couch for two nights. After discussing the pros/cons of each option, I still ended up picking the bottle after nursing option. I asked that first he be weighed at noon (wearing only his diaper like they do at night) to see what he had gained just by nursing alone. It turned out he had gained 8 grams in 12 hours, which was as much as he had gained in the pervious 48 hours. Just through nursing he was getting much closer to their goal. They did pre and post weights with the next two nursing sessions. Can I say how much I detest having everything related to nursing being quantified? From those weight meausurements they decided to offer him 20ml by bottle after I nurse him. During the meeting in the conference room, I objected to the plan to go back to just following the clock. The other doctor agreed with me and said she'd get his doctor to change the orders as it makes no sense to wait to feed him if he's crying and rooting at 8:30am and isn't "supposed" to be fed until 9:00am.

I checked into the RMH and had an early dinner over there (leftovers from their refrigerator) and then came back over to the NICU only to find out they were moving us into the demo room. I also found out no one had been in it last night. It was closed for cleaning. I would have cleaned it myself if it meant I could have had a shower and a place to sleep! Oh well, at least Oliver and I will be rooming together tonight. The nurses will be giving him the bottles for now because I feel like I'll be too upset to give him one although I need to get over this hang-up. In my head I believe I made the right choice because we'll be discharged sooner, but emotionally it's really hard, especially since the first time I went to nurse him (6pm) after his first bottle (the previous feeding), he wanted nothing to do with nursing. The nurse said to try again at 7pm. He did better then, but it took a lot of work to get him started and he didn't last nearly as long as he had been prior to introducing the bottle. I was worried he might prefer the bottle months down the road. I wasn't expecting there to be an immediate change with him nursing. I think it had to do with the fact that he wasn't very hungry. Hopefully the bottle thing will be VERY temporary even though I do have quite a supply of my milk. They said yesterday they need us to take some home because my milk is taking up 4 times the space they typically allocate for each baby's milk in the freezer. Paul will be bringing coolers tomorrow.

Even though it feels like a failure, I know rationally it's not true. It's not that I'm not producing enough milk. Also, it turns out my milk has far more calories than the average woman's. The average is 20 calories per ounce. They had assumed with the fortification they were adding that it was up to 24 calories, but it turns out my foremilk has 27 calories an ounce and my hindmilk has 33.1 calories an ounce! They tested my milk, and this was the best news I got all day! I had been pumping one ounce off before nursing him. They suggested this evening that I start pumping 1.5 ounces off first to make sure he's getting the 33.1 calorie hindmilk when he nurses. I think part of the reason it feels like a failure is that I have been putting SO much time and energy into nursing him the past 10 days. I have spent 11-13+ hours a day pumping and nursing (I'm including the total time it took each session from getting the privacy screens set up to cleaning up the pumping supplies). I was willing to do all that toward the goal of exclusive nursing. It's very discouraging to work so hard toward a goal and then have to settle for what the doctor termed "plan c" (the least desirable option in his mind as well). This has made today a really rough one for me. I've cried a large percentage of the day. I'm sure tomorrow I won't cry nearly as much. I kept thinking of the saying "the end doesn't justify the means," and I know that doesn't really apply in this situation, but it did strike me that doing something I didn't want to do just to achieve the end I really wanted was a very unsettling experience. I'm hoping that tonight or tomorrow night will be Oliver's last night in the NICU. Hopefully they'll discharge us on Saturday or Sunday. We shall see.

Oliver had his first OT appointment today. They will keep following up with him for a few months here at the hospital. She gave me lots of suggestions, and hopefully I remember most of it because I wasn't exactly in the best frame of mind at that time. I thought all the arching he does was an "Oliver" thing, but it turns out it's a "preemie" thing. I also had conversations on the phone today with a nurse from medical assistance and the company who is supplying his oxygen (the man brought a second tank over yesterday since Oliver is now at a higher level and also since we might go home on the weekend when it's harder for them to deliver the large tanks to our house). I'm hoping his birth certificate will arrive in the mail asap because we need that to enroll him in our health insurance plan, and that has to be done by the time he's 31 days old, which is not that many days from now. In about 10 days he'll have an eye exam to screen hin for ROP. Hopefully he doesn't have this, but if he does, it's better to catch it early when it can be treated through lasers.