Thursday, November 3, 2011

NICU = Roller Coaster

The NICU is just as I was told it would be  - a roller coaster ride! There are some days (most days) they all seem to be doing well, and then out of nowhere, we get bad news! Those days are very hard. You want so badly for your babies to keep taking steps forward, the sooner they do, the sooner they come home, but being so small, its not that easy, they are doing the best they can.

The good news is they are all stable and on the right track now. I will update you on each of them, starting with Jolynne's surgery. At first she was doing great, breathing on her own, etc. Then on Saturday, the nurses noticed her belly was a little distended and swollen. They did and x ray and found some things outside of her intestine that shouldn't be there, meaning there was a hole in her intestine and they needed to do surgery right away. We were told there is possibility being so little she will not make it through the surgery, but if she doesn't have the surgery, she will likely pass away within hours. Ummm...this was probably the most difficult moment of my life. And because of all the meds I was on and being sick myself, I had no way to control my emotions. I was a mess. Period. Tommy and I both were having a really hard time. It was longest two hours EVER! Obviously we decided to do the surgery, where they would remove the section of the intestine where the hole was (hopefully it was not big and there was only one, something they cannot tell until they get in there). Our baby, the fighter that she is, survived the surgery and did really well. We breathed a sigh of relief but knew it would be a difficult road ahead. Luckily it was a small piece and so they removed it, but because she is so small, they cannot just sew the other intestine back together or it will grow closed and nothing can get through there so she has two pieces coming out of her stomach (a stoma). It is not as bad as it sounds. In 6-8 weeks, when she is bigger, they will go back in and reconnect the intestine, and then she will have to recover from that surgery as well.

Joynne is doing well considering everything she has been through. They took her off the continuous pain meds yesterday and hopefully she will be back off the breathing tube today or tomorrow. We are fortunate at this time, she does not have too many other issues holding her back, so as soon as she heals, and starts to grow, we are moving in the right direction.

Our little Mickey as it turns out, has meningitis (fluid around the brain) or so they think. All his blood cultures were negative but they did a spinal tap and the white blood cells were elevated which I guess is an indication of meningitis. They say he is in the gray area, where he is not having any seizures (thank god) and his test was not alarmingly positive where they can say without out a doubt that's what it is, but there is enough evidence to suggest that is what it is and because we know he was sick with something it makes the most sense to the doctors, but there is a small chance he does not have it. The doctors think because we caught it early and started him on several antibiotics to treat several different things, that may be why it is not showing in the blood and hopefully he will continue to improve. He is getting better. The biggest concern here is that it increases his risk for disability or developmental issues later in life, but being premature does that anyway, so we will never know. It is still a small chance, maybe 20-30% this will be an issue, but bottom line, he will be ok now, we need to just get through today and worry about later, later. Other wise, his lungs are getting better and so is his stomach so he is also moving in the right direction, slowly but surely. Baby Steps.

Georgia as I have mentioned continues to show off :-) Which is fine with us. She is doing so well. She is very alert and will lay on her back and look around and suck on the pacifier all by herself and move her arms and legs around and is actually acting a few weeks older than she is, so good for her! I am going to post some pics of Georgia and Mickey below. Jolynne is harder to get good pics of because of all the cords and tubes. After she gets her breathing tube removed, which is hopefully today, I will get some good shots of her as well.

Right now Tommy and I are going back and forth to the NICU at least twice a day for a couple hours at a time. Today I am having him drop me off so I can just be there. Going back and forth is very tiring, especially as I am still recovering from the surgery. I still cant drive so I have to go when Tommy can go, based on his work schedule. Next week, it will hopefully be easier once I can drive. While I am there we get to help change diapers, take temperatures, clean faces, etc. and I can try to hold them depending on what kind of day it is. I can talk to them and hold their hand and let them know that mommy's there and they are not alone.

Every day we leave the NICU

Here is Mickey...

Here is Georgia...


  1. I know it's so hard to feel so helpless, but just being there with your babies comforts them and helps them fight! I am praying for all of you and know those babies will thrive and be home in your arms before too long!

  2. I keep you all in my thoughts and pray for you all the time! The challenges you are all facing will one day be just a part of your past and with your great attitude I am sure you will all be able to move forward. Your precious little ones gain strength from your strength everyday so I will continue to pray for your courage and strength. I loved how you said, "we need to just get through today and worry about later, later." So true! Love to all of you! Your children are so beautiful!

  3. Those babies are destined to be the most loved children in history and are going to do great things. No question they will rise and be healthy. All three have the alert eyes of great hitters. ;-)TC