No end in sight

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
cindync
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Re : No end in sight

Postby cindync » Sat Feb 22, 637681 3:04 pm

Wanted to add, with the bottle feeding, they kept telling us one day it would just click, then it would be all uphill from there. They did not start bottles till he was 34 weeks gestation (he was born at 32), it went very poorly for a while. And just like they said it did click one day. Although honestly he was not very good when he came home with the bottle, he probably should have stayed a few days longer. He did not have any of the a & b spells, he just could not finish the bottle in the allotted time. I think he had to have 25 cc's or something and finish it in less than 30 minutes. When he did come home, we still had to use the little 1 oz disposable preemie bottles, though we did not dispose of them, we kept using them.

I know it sounds lame when they say they do not want to rush the feedings because they will have a setback. They really will. One day Aiden's nurse got the gavage and bottle feedings mixed up, and she gave him mostly bottles. We were excited because he did manage all those bottle feedings, but then 2 days later had a setback. And then he had to drop down on the bottle feedings and get more tube feeds. Which delayed him even more.

When he came home, he was still less than an oz for feeding. Even now he only drinks maybe 4 oz, pretty much has never taken more than this, and he is now 17 months old.

Looks like from your signature line Jack is 8 weeks old now? So he would be 35 weeks gestation then. They say to figure on the due date. Hopefully it will be by Thanksgiving for you.


michelle_chandler
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Re : No end in sight

Postby michelle_chandler » Sat Feb 22, 637681 4:32 am

Sonnet, I know how very hard it is right now. But trust me..there is light at the end of the tunnel. I too felt that very same way and was afraid to hope but your little guy is making progress and will be home before you know it. It's good to know that you and DH are advocating on Jack's behalf. I found that if we wouldn't have stayed on top of things that Shane would have had additional setbacks. How many cc's is Jack up to a feed now and are is bradys only during feeds?

(((HUGS))) Michelle

season
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Re : No end in sight

Postby season » Sat Feb 22, 637681 1:53 am

I'm so sorry for your frustration. I remember at times it felt like they were keeping my child captive. We even joked about breaking him out, by hiding him in my purse!

How much does he weigh now? How is he doing with breastfeeding?

sarab
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Re : No end in sight

Postby sarab » Fri Feb 21, 637681 7:49 pm

Oh, Sonnet, I'm sorry. At the NICU both of my kids were at, the "rule" was no As and Bs for 7 days before they could go home. I can't tell you how many babies we saw make it to day six only to have an episode and be set back for at least another week. Simply heartbreaking.

How many weeks is Jack, gestation-wise? Like D'Arcy said, our NICU wouldn't EVER say anything firm except "don't expect them until their due date". I know it's so frustrating and it seems never-ending, but your day will come.

I hope and pray that Jack continues to do well, and is home with you soon.

Hugs,

kelly1972
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Re : No end in sight

Postby kelly1972 » Fri Feb 21, 637681 5:22 pm

Sonnet,

I'm so sorry you are frustrated. I know the feelings all too well. I'm happy that Jack is making some good progress. The feedings are difficult. Nicole had feeding issues as well. I think all preemies do. Is Jack still in NICU or in a level 2 now? You have been through a lot and it is easy to get frustrated. What I do that really helps me when I get that way is think about how far Nicole has come and that she is here safe and sound. I hope Jack is home very soon in your arms. Take care.

darcynulph
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Re : No end in sight

Postby darcynulph » Fri Feb 21, 637681 4:53 pm

Sonnet,

He seems to be right on track for his age. My dd had feed issues as well, she is a 30 weeker and was in 7 weeks. So my point is I know this is he!!, but I don't think you should think that this is unusual. My Doctors said plan for the due date and anything earlier is a blessing. So what is the due date?

cindync
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Re : No end in sight

Postby cindync » Fri Feb 21, 637681 9:11 am

Oh Sonnet, I thought from your last email to me that he would be home soon! I know you are so frustrated, and just want him home. Feeding is so hard, that is what kept Aiden in there longer too.

sonnet15
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No end in sight

Postby sonnet15 » Fri Feb 21, 637681 6:16 am


Well, after teasing and hinting that he'd be going home in around 3 weeks... 3 weeks later, he's still almost in the same place. Part of it is because they haven't really pushed him-- it took a meeting with my husband and I and the doctor to get him into feeds that were given over an hour instead of 2, and to work on moving his oxygen level down as well. Also, as a result of the meeting, we are now working on giving him one bottle a day, and unlimited breastfeeding. Still... the road we're on seems so long. I spoke to the nurse practitioner last night, and in order to go home without a monitor he's got to go 5 days without an a/b episode, then they'll take off the caffeine, and then he's got to go 5 more days without an episode, and then he can go home without a monitor. He was up to 3 days.... and he brady'd this morning. And that's just the one test. He's also got to feed much more reliably. I guess I'm just feeling super frustrated.. I saw the light at the end of the tunnel and the NICU train came and blocked it once more. I'm praying so hard to have him home by Thanksgiving... But I'm kind of afraid to hope.


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