What an odd feeling!
We have our baby all to ourselves!
Nora was just wheeled from her little cubicle in Pod D of the NICU to the “rooming in” suite where Jason and I will be staying with her tonight – and potentially the next several nights until discharge.
She has a nurse assigned to her but she won’t bother us or her much except to come evaluate her briefly and of course if her monitor alarms go off. She is still hooked up to monitors BUT we were able to get them to turn off the monitor screen in our room so that we cannot see what is going on.
It will be good practice for going home when we will (as with Kali four years ago) have to check that she is breathing by looking at HER rather than a screen!
The last two days I’ve sent short emails to our family and I’m copying them at the end of this for those of you that want a little background on the last few days and what has transpired to bring us to the point of having Nora in a room with us for an overnight stay. So far today is going well – she has had two good breastfeeding sessions out of two tries and will hopefully soon be getting hungry for a third. The feeding tube had to be put in briefly overnight when she wasn’t able to take her whole feeding with the bottle. However, they removed it first thing this morning and all of us are much happier when it is out. She rests better and I rest better.
The plan is, as of now, that we will be discharged most likely on Sunday of this weekend if all goes well in the next few days. She does need to prove with outputs in her diapers and by gaining weight that she is getting enough from me. We have to go with those clues now since we can’t watch how many cc’s of milk are going in through the tube. She was down about 10 grams last evening to 1845 grams but the nurse on was actually very happy with that and thought that she was actually doing great for her very first day of trying to work for all her food. And work she did – work we all did. I feel really tired but less anxious. Overwhelmed by the task ahead but much more ready to work hard at breastfeeding with her than with tube feedings. And she seems to do a little better and get a little stronger each day.
We had a long consultation again today with Dr. Braddock, the geneticist. We cannot complain at all about the amount of time he is giving to us and his patience with answering any questions we have. He continues to feel that the DNA bloodwork he recommended to us would be helpful in trying to determine what is causing the variety of things going on with Nora. We just gave them the go ahead to do that today and Nora just survived having about 5 cc’s of blood drawn and is sacked out again. He would also like to continue to follow up with us in the future, even if a clear diagnosis at this stage of her life is not reached.
He was clear that the only thing that we might end up with at the end of this is to say that “Nora is Nora.” He is also not recommending we do every new test that comes down the pike. He hopes to help us figure out what is going on solely so that we can parent Nora in the best way possible and know how to care for special needs she may have and also to give a sense as to whether it is likely to happen in future pregnancies for our daughters down the road.
It seems that in the coming days, weeks and months, Jason and I will be faced with a lot of questions about how far to go down the road of testing and attempting to put the “Nora puzzle” together. At this point in our journey, I feel the need to focus as much of my attention and energy as possible on learning how to mother her. For right now that means working on feeding, holding, burping, cuddling, loving, and getting to know some of her cues. That might mean something really different down the road.
Speaking of mothering, it is getting to be time for a temperature check, diaper change and another session of feeding (that is after Jason gets done photographing her!!).
Until next time, Janelle
Monday, November 19
Hi Family, I thought I would send just our family a quick update today.
First the good news - as of this morning Nora is OVER 4 lbs. She is now 1840 grams which is just about 4 lb 1 oz. It felt like a milestone for sure. For some reason, today has been a more emotional day again for me - maybe not having my 4 year old diversion around to help me (Kali is with my parents for the week and having a wonderful time. Of course she about made me melt last night when she told me over the phone, "I wish I could give you a hug."). Today has just had some ups and downs:
She has a new nurse once again which always takes me some time to get used to. We left at the 12pm feeding because she was really sleepy and I needed to get out of the hospital so Jason and I went for a walk. When we came back I laid down and Jason went in to her. He came out to let me know that they had done the eye exam while we were gone (which apparently is not pleasant) and she was pretty wiped out. They also noticed a bit of blood in her tube which concerned them. So she had an x-ray which was fine but they are guessing that the feeding tube which needs to be changed was probably irritating some spot in her belly. She is still refluxing some too but not nearly as much. Anyway, her breathing and her blood oxygenation is really altered this afternoon but when we just talked with two nurses they said that the eye exam totally wipes babies out for the rest of the day. By the way, the eye exam was normal... I hate that she has to go through all of this - and that we are not there with her (not that I would be much help at all!).
So it's obviously not a productive bottle/breastfeeding day. She is sacked out in Jason's arms right now. I will go back in before too long to learn to put the tube in. They are going to put an even skinnier one in which is supposedly easier. We'll see. I hope that she is more alert tomorrow and we can pick back up on feeding. She did breastfeed some at the 9am this morning. Love you all! Janelle
Tuesday, November 20th
Good morning family, Jason is about to hand me a little one to see if she wants to nurse again. He just changed a third poopie diaper of the morning - feeling a bit like Kali days. It seems like today is off to a different start from yesterday. We both will likely be with Nora all day as we are attempting nursing on demand. That's right - the feeding tube is currently out. It will likely go in again later today, but for now we are enjoying seeing her little face free of tape and tube.
She was at 1855 grams this morning (up 15 grams from yesterday to about 4lb 1.5oz). We were happy with this as yesterday was a tough one. She did not spit up overnight and when possible they used just the hind milk (fuller in fat) that I had pumped before leaving.
This morning before rounds we had the nurse take the feeding tube out since we were concerned it was in too deep. She then agreed to leave it out while I breastfed. They came around on rounds when I was burping her. We mentioned wishing we could just leave it out and try nursing on demand for the day - they agreed! So we are trying it. She has nursed really well several times and it now actually protesting a little with daddy as I think she would be interested in continuing but the nurse would like her to get some rest before the next feeding time. So we'll see what the day brings. It is kind of odd how much my anxiety goes down without that tube in her nose. She also seems to breastfeed better as well. We are not too hopeful that it will be able to stay out but it is hard to not wish for that. There are no tests planned for today unless they do blood work but we are still trying to figure out some insurance questions before we let them draw more blood. She seems to have recovered mostly from her eye exam with her heartrate down, breathing more regular and deep and her blood oxygenation more stable. So it also helps that her machines aren't beeping too much. Well, I better go. We love you all and will keep you updated as things progress. Love, Janelle
What an odd feeling! We have our baby all to ourselves! Nora was just wheeled from her little cubicle in Pod D of the NICU to the “rooming in” suite where Jason and I will be staying with her tonight – and potentially the next several nights until discharge. She has a nurse assigned to her but she won’t bother us or her much except to come evaluate her briefly and of course if her monitor alarms go off. She is still hooked up to monitors BUT we were able to get them to turn off the monitor screen in our room so that we cannot see what is going on. It will be good practice for going home when we will (as with Kali four years ago) have to check that she is breathing by looking at HER rather than a screen!
The last two days I’ve sent short emails to our family and I’m copying them at the end of this for those of you that want a little background on the last few days and what has transpired to bring us to the point of having Nora in a room with us for an overnight stay. So far today is going well – she has had two good breastfeeding sessions out of two tries and will hopefully soon be getting hungry for a third. The feeding tube had to be put in briefly overnight when she wasn’t able to take her whole feeding with the bottle. However, they removed it first thing this morning and all of us are much happier when it is out. She rests better and I rest better. 
The plan is, as of now, that we will be discharged most likely on Sunday of this weekend if all goes well in the next few days. She does need to prove with outputs in her diapers and by gaining weight that she is getting enough from me. We have to go with those clues now since we can’t watch how many cc’s of milk are going in through the tube. She was down about 10 grams last evening to 1845 grams but the nurse on was actually very happy with that and thought that she was actually doing great for her very first day of trying to work for all her food. And work she did – work we all did. I feel really tired but less anxious. Overwhelmed by the task ahead but much more ready to work hard at breastfeeding with her than with tube feedings. And she seems to do a little better and get a little stronger each day.
He was clear that the only thing that we might end up with at the end of this is to say that “Nora is Nora.” He is also not recommending we do every new test that comes down the pike. He hopes to help us figure out what is going on solely so that we can parent Nora in the best way possible and know how to care for special needs she may have and also to give a sense as to whether it is likely to happen in future pregnancies for our daughters down the road.
Speaking of mothering, it is getting to be time for a temperature check, diaper change and another session of feeding (that is after Jason gets done photographing her!!). 
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