The more time that seems to go by, the harder the days get for some reason, even though the babies are in a much better place now than they were when they were born. I think I was expecting them to be in the hospital for a awhile, 6 weeks at least given how far along I was, maybe a little longer, but I can honestly say I was not prepared for 10 weeks or more which is where we are at. I'm going to give another update on the babies. I wish they were all positive updates, but the reality if the situation is that its not always easy and I'm not always positive. I am very grateful for my babies and this is all worth it but some days, my sanity hangs in the balance.
Round and round and round we go. Lately I feel like we are going in circles. I can honestly say that with Mickey, I do not feel like we are any closer to going home than 4 weeks ago. That's because, if its not one thing, its another. He weighs 7 pounds now! Wow, a normal baby size and will be full term in a another week. Although his breathing has improved, he still requires oxygen. Its getting better though. To make things even more complicated though we learned he is aspirating almost all his food when he swallows, so its going directly into his lungs, which of course has slowed down the healing of his lungs. He does what they call "silent aspirating" so he does not choke or cough and we had no idea he was doing it except we were wondering why we were not able to wean his oxygen. So they did a barium swallow test and actually saw the milk go into his lungs as he ate. Awesome! They tried different thicknesses of formula and milk and different nipple sizes and he was able to successfully swallow the highest level of thickness (honey) with aspirating. However, the doctors will not let him start nipple feeding again until he is almost completely off oxygen. They want to focus on his breathing and reduce any inflammation caused by the aspirating before trying again. This could take several weeks, or it could take one, but if it is going to go anything like everything else, it will take around two weeks, then they will start letting him nipple feed the thicker formula in very small amounts and build up. Then in another 6-8 weeks they will do another barium swallow study. They do not expect his swallow to improve before that but he may tolerate the thicker formula.
This means he might not be home for a lot longer than we thought. We should have a better indication by Monday of what that looks like but who knows anyway, every time we think we have an idea of what is going on, something else happens and back we go. There is also been talk he may have to go home on oxygen or an NG tube (feeding tube) depending on how the next couple weeks go. So Monday we will know more. Maybe. Maybe not.
Jolynne had a successful surgery, but it took her a full 10 days to have a bowel movement and they would not start feeding her until to make sure her intestines were working properly. This was three days ago. So they started feeding her 10 ml's that day. Overnight she threw up three times, which means she was not tolerating the food. So they stopped feeding her again and yesterday they did a barium enema to make sure there was not a stricture or obstruction in which case more surgery would be required. Thank GOD, there was not, so tomorrow morning they will try again an even smaller amount and hopefully the enema will help push some things through and move it along so she does not get backed up so to speak and throw up her food. Then she needs to build up to about 60ml's of food or 2 ounces every three hours, starting with 5ml's tomorrow. This they tell me will take about 4 weeks. I am so happy my baby made it through her surgery though. She is so alert and awake, with so much personality and she weighs 5 pounds, 10 ounces now. Wow! They aren't preemies anymore, are they?
Georgia is doing well at home. She is starting to cry more and behave like a normal baby. This is a relief actually. She loves to be held and we love to hold her. We have wanted this for so long. I hope she does not get to used to it though because eventually there will two other babies she will have to share us with. She is such a joy to have around and when at homewe just sit and stare at her and laugh at her little noises and make faces at her faces and its just so wonderful. Anyone who is a parent knows what I am talking about. Its an indescribable feeling. I cannot look at her, or any of the babies for that matter, and not be happy regardless what else is going on.
I think I am really struggling to keep it together at this point though. I am not embarrassed to admit it. Its been 10 weeks and I just want my family to be all together. I dream of that day. My mom pointed out to me this morning, as I was still upset over the 6am phone call about Jolynne throwing up and the day before learning about Mickey's set back, that nothing has gone easy for me, its always been the long and hard way (part of that was my own doing), so why should this be any different than any of those other times, it is what makes me stronger. She is right, it has been hard at times, and I am strong, and I was always expecting this to be hard from the moment I learned we were having triplets, but this is harder than I thought. And I will get through it, and I will be even. stronger., and even though right now it feels like a never ending circle we are stuck in, my babies will eventually come home so we can begin our new life together.
I was talking to one of the nurse practitioners yesterday and I was almost begging her to give me an estimate of when they can come home, even though she doesn't know, and things could change tomorrow. I was also looking for some reassurance. I said I feel like I should not be upset, there are so many other parents in worse situations than we are, whose babies may not be ok, and I know mine will be, and she stopped me and said, "Stop! Kara, I do this every day, I talk to parents who have a baby born at 30 weeks, who are dealing with the ups and downs of the NICU and the different complications that come from being a preemie, and watching their baby struggle, and you have THREE." Then I didn't feel so bad for feeling down and overwhelmed. My heart goes out to any parent that has to go through this though, one baby or three, its a tough place to be at times.
So, I am going to take the next few days off from the hospital, well I am going to try. Every time I plan to get something done in the morning before heading over there, my car seems to just steer itself in that direction and I put off whatever it was I was going to do. Its just so hard to stay away from my babies. But it has been recommended to me to try and do some things for myself and re energize. That way maybe I can go back to the NICU in a couple days without feeling so overwhelmed. SO, I am going to try at least today, but I'm not sure if I can make it two days without seeing them.
You may be wondering how Tommy is doing and he is doing better than I, I suppose, He is amazing. He is frustrated as am I but not as emotional. Is it a girl thing or what? We are both looking forward to the new year and what it holds for our family. The chance to all be together finally. A lot of good memories we will be making this next year and I cant wait.
A blog is a place where I feel its important to be honest about what you are writing about, otherwise whats the point, so I hope you don't mind reading even when its not always the most positive. There will be happy entries and sad entries but this is how it is, just like with every thing else in life. Ups and downs, and hopefully my next entry will be more ups than downs. The big picture is I still have three beautiful babies that I thank God for every day and I, more than most probably, understand how fragile life is, and how quickly it can be taken from you, so even though I have had some bad days lately, I try not to lost perspective of what is really important at the end of the day.
Kara, you are incredibly strong & am amazing mother already!!! My boys were in the NICU for 6 weeks & I was at my wits end, I cannot imagine 10 weeks in & looking at another few weeks. You will look back in several months though & feel like this part was a lifetime ago. Hang in there sweetie & you will have, you will have your whole family home together soon. Maybe it will be an ultra sweet Valentines this year :o)
ReplyDeleteps, I made some hats for the babies, they are preemie size & I know my boys couldn't wear them once they hit 5lbs, so I'm going to make some regular baby size hats & get them off to you...
Kara,
ReplyDeleteYou're an amazing young woman who feels things deeply. The babies are lucky to have you as is Tommy.
Being three hours away and fighting illness we miss you and the triplets terribly and feel like we've been no help. Just know we're here and we will get there to help in anyway we can.
Hang in there!
Tom
And on my phone this only works if I go with anonymous LOL. ARGH.
ReplyDeleteTom
Kara and Tommy - I am so proud to be a great-grandmother to Georgia, Jolynne, and Mickey. What they need most is a healthy and loving mom - which you are. But, please, do not anguish over taking care of you - that is very important. Both you and Tommy need to take a step back now and then. Mommy and daddy are the foundation of their world. Love you all so much.
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