Well, this week I was so hopeful for us going home really soon. I was so excited when they moved Kiari into an open air crib. She had a blood transfusion and those typically give her a lot of energy. I was really hoping that the new found energy would spark her hunger and desire to eat from a bottle. That has not happened. In fact, I find that she is still quite sleepy and will only make it through about 1/2 of her bottle before she is too tired to finish it. The rest is then fed to her through the NG tube. She hasn't had a full bottle feed in the last two days. Then to make matters worse, they increased her feed amount from 50 cc's to 55 cc's this morning. I just cried. If I can't even get her to get hungy enough to finish a bottle with 50 cc's, what hope do I have to get her to take 55? and true to form today, she didn't. :( I even had to leave the NICU before the last feed because I just couln't bare to watch her take another tube feed knowing that we are still so far from going home.
I tell people my frustrations and then everyone questions why they aren't doing things differently, why aren't I suggesting this or trying that. But when it comes down to it, I have never cared for a preemie before and these amazing people have and I know they know what they are doing and trust them. It is just so hard to be in the NICU still. We were originally told that if all goes well we would most likely be out of there in 5 - 6 weeks. And everything was going SOOOOO well. I really thought we would be home a week or two ago. Now we have been in there for 7 weeks and while I am sure the end is closer, it still isn't in sight. We are now looking at 8-9 weeks total,and that just kills me. I would be 37 weeks pregnant now if I were still pregnant. And actually, I would have never made it that far to begin with. my longest pregnancy was 37 weeks.
I am not sure I am functioning at a top level right now either. I am not sleeping. Even when I can, I don't/can't. Even now it is 1:30 am and here I am wide awake... tired, but awake. There is a lot on my plate right now. Garth is having surgery Monday morning. He is going to be pretty sore I am sure. The girls don't have school on Monday so I am going to need to find someone to watch them. My mom is flying in on Fridy night. I was really hoping that Kiari would be home already and that was the entire purpose of having her come out. My surgery is on the 1st of February. I hope Kiari doesn't decide to come home that day. That would be miserable. We need to get my house listed in just a couple of weeks and it is a WRECK! I don't have the energy to go through all the crap we have and declutter and organize and make things look nice. There is paint that needs to be touched up, there are pictures and things that need to be put up on the walls, drapes to hang, just to name a few. People tell me to rest and take it easy, but there aren't enough hours in the day to do it. Although I have to say, Right now I haven't been doing any of those things anyway, but I am still not exactly getting rest either.
I wish I had at least one more year here. But true to form for our lives and schedules, it always happens all at once. So really, I am not surprised. Just exhausted and frustrated.
It is reallly hard to have Kiari at the hospital and still try to keep my home life going. I feel bad for Riley and Kate. I feel like I am not being the best mom that I can be to them. Even when I am here, I don't feel like i am "here." But they have been troopers.
One other thing that has me pretty frustrated is that I really wanted to nurse Kiari. I worked hard with her to make certain that she could latch properly and get it. She was doing pretty well, but would get pretty tired after about 1/2 the feed. So they encouraged me to not nurse, but rather just pump and give her a bottle. So more than a week ago, I did just that. I stopped nursing and have been giving her a bottle, but I can't see that it has made ANY difference at all except to make it even more difficult to get her to nurse, if not impossible when I get her home. In the meantime, I am quite the producer of milk. I think even the cows would be envious of my abilities to produce milk. I am so efficient at it, it is actually quite embarrassing. I easily produce 3-6 times what Kiari needs. Our freezer is full, the freezer in the NICU has quite the stash and even one of the NICU doctors took some to put in her deep freeze when she found out I was beginning to dump it due to a lack of space. However, for the past week and a half, I have been dumping it again, because once again I am out of space. If you have a deep freezer, it can be stored for up to 12 months. But I don't and it will only be good for about 4 months. Well, at this point some of that milk is nearly 2 months old. So it seems that everything I have stored to this point will have to be dumped anyway. It is so frustrating to go through all of this work just to turn around and throw it all away anyhow.
I am pretty sure I am not one of those people who will pump and feed from the bottle. If I do that I will never leave my couch. There is too much to get done to just sit and pump and bottle feed the baby all day long.
Well, I am finally feeling tired and everything is just rambling on at this point anyway. I just needed to get some of it off of my shoulders. I just hope it is all over soon and she is here with us. At least I would have a really good reason for not sleeping and being so tired.
Melissa ((((hugs)))
ReplyDeleteThe NICU is so hard. So very hard to deal with. Its one of those things that people just dont understand until they have been there, done that, just as it was in us becoming mothers of angels...
YOu need to rest or you WILL completely burn yourself out, you could land yourself in the hospital from exhaustion. Do what you can to rest. Go buy some Melatonin from Walmart, our bodies produce it naturally to help us sleep and sometimes we need that little extra boost. Its very inexpensive and you can find it in the vitamin section.
Do yourself a favor, take a few days off from the NICU. Oh trust me, its so hard, soooo very hard but you need to do it. When your mom gets in town, take a day to just lock yourself in your room and sleep and pray and sleep and pray some more. The next day, get up and spend the day with Riley and Kate, go have a girls day and do NOT feel guilty for not being with Kiari. She will not remember it and the NICU staff Im sure will encourage it. They will continue to take excellent care of her.
Then enlist the help of some local friends to help you out with your house. Offer them dinner, most good friends will be more than willing to come help you out, I totally would if I were closer.
I know the days grow so long towards the end but one day this will feel like it was all a dream. I barely remember my childrens NICU stays anymore, I actually had to go look on a calandar to see how many days Stephen spent in the NICU, it was 73 days, then another 4 or 5 days for reflux issues at another hospital. The twins were 19 and 21 days. Each time I was so weary at the end, I NEEDED them out, and I NEEDED them out right then and there. I look back and know they NEEDED to be there as long as they were.
You will have the rest of your life with Kiari, PRAISE GOD! So yes, for this short season she needs to be in the NICU but soon she will be home!
On the milk front, girl, do I know where you are coming from ;) I was a cow too, used to joke that I was off to go milk my udders lol. Have you looked into the companies that will take your extra breast milk to be used for those babies who need it and cannot get it?? Ask the NICU if they know any local companies, or do a google search. Call the La Leche League, they can guide you as well.
Once she is home, it will take work for her to latch, but it can be done. I know Im not the best example of that, I pumped 13 months with Stephen. The twins, I got very ill and exhausted and lasted 2 months I believe. SO REST! I know plently of people though that were able to successfully switch to breast only after the NICU so it can most definely be done.
Hang in there girly, I know its hard, but soon this will all be a distant memory.
Cassie
I am sure that the switch form breat to bottle is for purpose of measure. When she nurses they can't put a number to it and that is hard for them to embrace. If you feel that she would be better with the breast then try again. I also suggest finding someone who could use the extra. I am sure you can find someone. Hugs! I haven't done this so I don't know but I can only imagine how exhausted you are. GL with the surgeries and don't worry about the girls. They are old enough to understand what the priorities are and they are wonderful kids that are growing from this experience. Wait until they are adults full of compassion and love!
ReplyDeleteLet me know if I can do anything on afternoons or weekends. I am very good at painting. Hugs!
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