I am having a difficult time getting to the computer these days.
A difficult time answering email.
A difficult time writing thank you notes or sending birthday cards.
A difficult time sleeping, or rather, finding time to sleep.
A difficult time with the fact that our son has been in the hospital for nearly three weeks.
A difficult time imagining how we will ever manage again without help, even though I know that eventually I will need to run this ship on my own for a good portion of every day.
This is just hard.
Most of the time I am able to move along from one thing to the next (mostly because we have so much help), and pump and visit/hold/feed Michael, and occasionally eat things, and shower, without thinking too much about any of it. . . putting one foot in front of the other being the main goal most of the time. And we are managing.
But today I had the living poop scared out of me. Michael (who is closing in on 4 lbs., 12 oz.) still has a lot of learning to go as far as the bottle is concerned. Babies as young as he is have to work very hard at coordinating sucking, swallowing, and breathing. It is easy for them to choke, or hey! just get a little tired and decide to take a break from breathing. Which is what Michael did to me today. He is usually pretty tired at his 10 a.m. feeding, which is a time I am normally there, so I haven' t had a lot of luck with him and the bottle. This is frustrating because obviously a parent likes to be able to feed her child. Today his oxygen sat dropped to 50% when I was feeding him. It is supposed to stay between 90 and 100% and an alarm goes off if it falls below 85%. As soon as it got close to that 85% I had the bottle out of his mouth and was sitting him up and talking to him, and that number just continued to drop. And then he started to turn sort of bluish and one of the nurses scooped him up and apparently talked some sense into him, as he decided to breathe again. She didn't have to actually resuscitate him or anything, but the whole "episode," which is what they called it, basically terrified me. As much as I'm anxious to bring him home, I am not leaving the hospital with him until he stops doing that. Unless an entire medical team agrees to come home with me.
They kept assuring me he was fine, but I still couldn't stop crying for a good forty-five minutes. And they did put him on a different kind of monitor that has some recording capabilities so they will be able to watch a little closer for this sort of thing and make changes in his care if necessary. I know they won't send him home until they think he's ready, but I just can't imagine what it would be like to have something like that happen here.
Today we also happened to be signed up for the infant CPR class that parents of NICU babies are required to take. I have taken many CPR classes, including an infant one, in the past, but practicing on those plastic babies was really upsetting after what had happened this morning. I NEVER EVER want to need those skills.
Please tell me that, in a few weeks or even a couple of months, we'll all be under one roof. Matt and I and two beautiful and healthy children who we are perfectly capable of caring for. Because today I'm having a hard time seeing that.
13 comments:
You ABSOLUTELY will be. In a few months you'll be settling into life as a family, and all this will be behind you. In the meantime, our thoughts are with you, always. I'm sorry it's hard.
A friend of mine had a baby (full-term, incidentally) who had problems with that forgetting to breathe thing several times at the hospital. So they sent the baby home with that monitor you described; she had to wear it for six months, I think. Are they planning on sending anything home with you, do you know, to make sure you would be alerted if he had a breathing episode? Maybe that could help set your mind at ease.
Someday you'll be sitting back with Matt at home and laughing at these two rambunctious kids and wondering how this beautiful little boy started out so small. Life will return to normal. I can't imagine what you're going through right now. It's tough, but you can do it. This too shall pass! Do what you need to do to get through one day at a time.
Sweetheart, you will DEFINITELY have that future soon. You and Matt and your two beautiful healthy thriving children. That is so scary with Michael, and I'm glad he is in such a great hospital right now when he needs it. He will not always need it. He will come home and be just fine. Babies are so resilient, despite their fragility.
You are right that having two is more difficult, but it will be so much easier once you are all together (can can ditch that pump!). It will get better. It is SO HARD right now. I cannot imagine. But it WILL GET BETTER.
There will be a time when you will be looking back on this. Michael will be stomping around all pink-cheeked and loud, and you'll laugh to think of how he used to be so tiny and fragile.
Also, I don't know if this helps or hurts, but this time you're going through sounds like a bad dream.
Yes, I can picture Michael's first birthday- he's sitting in his high chair poking at his cake, or standing on someone's lap, his chubby cheeks making everyone who's near want kiss him, and you will look back at this time and just be blown away that you DID it, and that it seems like just yesterday and also like 10 years ago...
My very dearest friend had a baby at 32 weeks, and she realizes now she was just plain ANGRY about the whole situation. So if you have days when you are just pissed off, just know that it's normal...
Kisses to that sweet boy. Can't wait to see him chub up!
Oh, try to hang in there. Apnea is SUPER common, especially in little bit kiddos. A lot of babies go home with a monitor to wear that will wake you (and anyone in a three block radius) if they act naughty, and it records everything so that they aren't taken off of it until they are episode free for a significant period of time.
He's going to be a wild man before you know it - then you can start using a bit of guilt to get him to do things by reminding him that he was such a trouble maker early on and he OWES it to you to behave.
I hope today is a better day!
Yes, I remember.
Here's a helpful hint... If you jostle Michael's feet, or pat (with force) the bottom of his feet, he'll begin breathing again.
But you won't need to know that once you've left the hospital. They won't release Michael if he's given them reason to be concerned about possible apnic episodes. And that's a good thing.
Hang in there! It gets easier. I promise!
Anne
Hi there. I stumbled upon your blog from a friend of a friend. I hope you don't mind that I've checked in on you from time to time when you were expecting to deliver early. My interest is due to the fact that I delivered my twin girls at 29 weeks. One had a heart condition we knew about prior to delivery, and didn't make it past six weeks old. My other twin is now currently sleeping in my arms here at home.
Your journey in the NICU sounds very familar. I'm sorry that you have to be there, as it's not easy to be a NICU mom. We learn far too much too fast. Feeding was my daughter's biggest issue. She would desat EVERY time she ate. It was so frustrating to me. I would go in excited to be with her and feed her and she just couldn't get it together. They kept telling me that one day she would just "get it" and we'd be out of there. I wasn't so sure of that since it continued to happen day after day. But, they were right. Right after her due date (Jan 1) she seemed to finally get the pattern down and took all her feeds quickly. I was amazed! The same thing will happen with your little one. It's hard to be patient... but it will happen.
Being tiny means our little ones have to work so hard to do what is so basic to most babies. He will be home before you know it and you'll finally find time to be a family together. Nothing is a difficult as traveling back and forth daily to the NICU. It's tiring, so make sure you take care of yourself so you can be there for your son.
If you get a chance, it might be interesting for you to read about our jounrey in the NICU at: http://aviewintoourlives.blogspot.com/ Check the Nov. and Dec. posts for very similar stories.
Good luck! He'll be home soon!
Oh sweetheart. Life will become normal someday. I'm praying for you each and everyday.
Oh honey it will happen. Really honestly and truly. You're doing an amazing job and Michael knows that and needs you. And I meant it--he and Theo will need to have a playdate down the road. They will be climbing all over things and getting into trouble and we'll just look at each other and laugh--our two NICU babies, causing trouble. Because that's how it SHOULD be. And it will.
Hugs.
XOXO
Hi Kels,
I'm thinking of you alot these days, because I feel like my own situation is challenging right now, and I don't have alot of the obstacles that you have going on right now. But it seems that every time you post, you guys are making progress and getting closer to being that healthy family of four. Keep putting one foot in front of the other and know that you are doing an excellent job.
You will all be home and under one roof soon! It will be here before you know it. No one can prepare you for the NICU, but your baby is being taken care of my the best people! My boys were in the NICU for over 4 weeks and we are all home now. Just keep your chin up and know that you will all be home together soon.
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