Everyone tells me that's how it goes in the NICU. Lately it feels like one step forward two steps back with little Claire. Last week I got a call from one of the NNP's (neonatal nurse practitioner.) She said that they had done an echocardiogram on Claire's heart and they found two abnormalities. The first is called a PDA and is common in preemies and even sometimes happens in full term babies. Basically it's an abnormal opening between two major blood vessels leading from the heart. This opening usually closes on it's own soon after birth, but Claires hasn't. A PDA can be mild, moderate or severe. Claires is moderate. She has another echo on Thursday. If her PDA is the same or any worse, they will try to treat with medication, which I was told "sometimes" works. If it isn't successful, they will have to do a surgery to close the opening. The thought of surgery on little Claire's heart makes me sick, but I've been reassured that it's not as scary as it seems. The success rate is super high and recovery is only a few days. So, that's the first issue. The second problem is that Claire has an actual heart defect called an ASD. She has a hole between the two upper chambers in her heart. She will have to be followed and if she starts becoming "symptomatic" things like chronic chest infections, fatigue, high blood pressure, she will have to have surgery to basically "plug" this hole.
Besides the heart issues, Claire has just gone down hill a little bit. Her oxygen sats are all over the place, her respirations are high, and she used to be pretty alert and always seems pretty lethargic now. I can't breastfeed her... apparently it would force her to exert too much energy and they want to avoid that. Oh, but she is so beautiful. She crunches up like a little monkey and loves to be held. She is still gaining weight, which is promising. Please keep my little Claire in your prayers!
Lia and Brynn are both doing fabulous. Brynn is about 4 1/2 lbs and Lia is approaching 5 lbs. They should be in open cribs by the weekend and are maintaining their body temperature pretty well. They are both just on minimal amounts of oxygen and are progressing with feedings. Hopefully they will be home in a few weeks.
The drive to University Hospital twice a day is getting a little old, but there's no way I could stand going without seeing my babies.
All in all I have many blessings to count. Claire will be OK, it will just take some time. When I see other babies in the NICU and hear about all of the issues my girls could be facing right now I realize just how lucky we are.
Here are some updated pics taken a few days ago when the girls were two weeks old. Claire is in the first picture, Lia is in the middle and the bottom picture is Brynn with her daddy.
6 comments:
Steph:
I'm so sorry about little Claire. We will be praying for her. Let's hope she won't need surgery. :-(
A lot of people are praying for your little girls.
And yes, your girls are BEAUTIFUL. Love the new pics.
Derek and Stephanie,
I promise I'm not a blog stalker, but this is Andrea Jeffs Hadlock. I grew up in the Lloyd's ward. My daughter was a preemie and born at 27 weeks. So, because of that I have been interested in your story. Kaja had the same problems that Claire had. She had a PDA as well, hers didn't close with the medication and she ended up having the heart surgery. It was really not bad at all. She went down hill pretty fast when they discovered her PDA, it was causing her sats to be everywhere and it seemed like every time I turned around she was alarming. After the surgery, she made some HUGE progress. She did have to go back on a ventilator before the surgery, but was quickly off it. They also did the surgery when she was still under 2 lbs. If you want to talk about it, just email me at andreahadlock@gmail.com
Steph- I am sorry for the news about Claire. We are watching your family news closely out here and will continue praying for all your beautiful babies! Hope you know how much we love ya!
Beautiful pictures of BEAUTIFUL girls. I will be praying for little Claire! My Cami (the smallest) was the one who often would do the same...two steps forward and one step back. It was heartbreaking, but they do grow out of so many of these issues as the grow stronger. I will pray that the tests come back great and that no surgery is required. I hope you are doing ok...I know what an emotional roller coaster it is and how difficult it is and am thinking of you. You've been through so much these past few weeks and I pray that the weeks ahead bring nothing but good news and 3 girls who are home! Please email me or call me any time if you need to talk!
Oh Stephanie they are precious!! My oldest daughter had to have surgery on her PDA because it didn't close too so I know exactly what you are going through. The surgery is minor but I know no matter how many people tell you that, as a parent it is nerve racking just thinking about it. Lindsay was only 2 pounds when she had her surgery and it took her a few days to bounce back but then there was such a noticeable improvemnt in her health. Hang in there! She will get through this and hopefully the medicine works and she doesn't even need the surgery. Email me if you have any questions, I would love to talk to you but I understand how precious every minute is in your day having to drive to the NICU and find time to spend with your husband and little girl!! You are in my prayers!!!
Steph, I was born with an ASD. I also had tricuspid stenosis. I had my first surgery when I was a day old. And that was 29 years ago! and I have had two kids and am feeling great. They can do amazing things. I would love to talk to you. Who is Claire's cardiologist? I happen to know several at Primary's. We miss you guys. And are praying for your adorable babies. My friend Jen would be a great person to talk to as she has gone through almost everything you are going through and more. I love to get the updates, email me when you get a chance. amyfree2003@yahoo.com
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