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Preemies
JrzyMeeba1
member
New to board-26w twins w/IVH, lost one son
JrzyMeeba1
member
in Preemies
Sort of hard to make a descriptive title, but I'm new to the Preemie board, coming from the multiples board.
I delivered our identical twin boys on November 21st after an extremely quick and traumatic birth. They were quite stable, although small, and we were told to expect a long roller coaster ride through the NICU. We didn't expect to hear two days later that both boys had bled into their brains during or just before delivery.
Parker's prognosis was extremely grim, as he had severe bleeds in both sides of his brain. He passed peacefully in our arms on Wednesday night.
Hunter's future looks a bit brighter. He has a moderate bleed on his left side, and a very minor bleed on his right side. In fact, our neonatologist continues to refer to his bleed as unilateral. We're expecting to be in the NICU until my due date near the end of February.
I never thought I'd have to deal with such a thing as losing a child, or living in the NICU. I knew I'd likely deliver a little earlier, but was being monitored bi-weekly to ensure the boys were growing evenly. We have such hope for Hunter's future, but are devastated with the loss of Parker.
We're in the NICU every day. My husband will return to work next week. Hunter doesn't yet have a primary nurse, so each shift brings a new face and a new way of handling his care. Because we lost Parker, we're so vigilant over his every movement.. watching him and his monitors. Each time he de-sats or does something new, we wonder if this is an indication that we're losing him too.
Anyway, I will be around when I can be to read and respond. We're still trying to figure out our schedule with this new way of life, commuting to a hospital that's 40 minutes away. Thank you so much to those who provided their condolences or prayers on the multiples board.. it's all so helpful right now.
As for IVH.. have any of you ladies had a child with IVH, and if so, what was the severity and developmental outcome (so far?)
Thanks again, and I hope to get to know you all.
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Re: New to board-26w twins w/IVH, lost one son
Welcome to the board. I am so sorry for your loss. My son was born at 26 weeks. He only had a level 1 IVH and it resolved on its own.
We also had a 40 minute commute to the hospital. It was hard at first, but once we settled into a routine it wasn't too bad. I would visit from about 9-2 each day and then usually go back in the evening with DH. You will find a schedule that works for you, don't feel like there is a certain amount of time that you have to be in the NICU.
Everyone here is very helpful so feel free to ask questions or vent when you need to.
welcome to the board. Congratulations on becoming a mommy, and my deepest condolences on your loss.
My son was also born at 26w, though we somehow managed to escape any IVH. I do know there a number of other mommas here who have.
I do coordinate a preemie sister program (If you'd like to be matched to a Big Sister, let me know) and I just looked at my database and I do have a couple of people with preemies between 25 & 27w who had some IVH. If you would like to be matched with one of them, let me know..
Hopefully they will chime in here shortly as well.
My son's GI doctor's NP had 26w preemies and one of her sons had a grade IV, and a ton of other issues. He's 2 now and doing really quite well. He has an expressive language delay, walked late, but is pretty much caught up now, minus the expressive language.
My Blog
I am so sorry for your loss (((((((((((((((hugs)))))))))))))))))))))) and prayers for Parker! It sounds like Hunter is a little fighter! Hopefully his stay will be uneventful from now on. Be with Hunter as much as you want ... he needs you too! Sending lots of prayers to him!
I don't really know too much about what you are asking about, but I wanted to express my congratulations and my condolences to you.
As for the NICU stay, I'd say this: don't be afraid to accept/ask for help if you need it. That's with getting to the hospital, housework, etc. Don't be afraid to ask questions to anyone in the unit, even if you feel like youve asked the same question a billion times or if it seems silly.
PM me if you ever need to vent or if you have questions.
Welcome! I'm so so so sorry for your loss
I'm glad to hear that Hunter is doing well. My son Andrew was also born at 26w2d. He had a grade 2 and a grade 4 IVH. I was terrified when the doctors told me. Andrew is 11 months old (actual age) and so far we haven't seen any implications of his brain bleeds, but the doctors said we may not notice anything until he starts school.
Despite everything he's been through (he was in the NICU for 17 weeks) he's doing great so far. He's gaining weight (he's over 16 lbs if you can believe that!), he rolls, he sits up, he wants to crawl, he's feisty, he does great with solids. Our biggest challenge thus far is reflux.I hope this gives you some sense of comfort!
If you want to know anymore more, just let me know.
I'll be praying for Parker, Hunter, and your family! Keep us updated.
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I'm so sorry about your loss and the fear you must face every day with your surviving boy. I'm glad, though, that you have found this board and are able to get some support right from the start.
I lost my first preemie son born at just 21 weeks and then had a 27-weeker whom I stayed with in the hospital for 3 months. My husband lived at our home 4 hours away while I stayed near the hospital. It was a very difficult time.
I truly hope your baby gets stronger every day and will overcome any complications that he must face. These preemie babies are so precious and they are true miracles.
I have started a preemie blog dedicated to helping new parents through the experience of having a preemie, staying in the NICU, bringing baby home, and raising a preemie. I think you would find it very helpful and I invite you to check it out.
Preemie Babies 101
www.preemiebabies101.com
Wishing the best for you and your baby boy!
I'm so sorry for everything you are going through. Welcome to the board. I pray Harrison heals up and has an uneventful stay in the NICU.
We lived an hour from the NICU and it was very difficult to commute. If we had not already had a son we would have stayed at the Ronald McDonald house. Have you looked into that? It might be a wonderful option so you can spend more time with your son and less time driving.
i'm very sorry to hear about parker...
as for hunter, congrats on his birth. i had a 24w5d preemie, also a traumatic and unexpected birth. we were in the nicu for almost 4 months. aaron had a grade I ivh on one side and a IV on the other. he's almost caught up to where he should be although his vision is keeping him behind. this might be because of the ivh although he was focusing and "looking" prior to having ROP surgery a few days before discharge.
i'm glad you found this board. these women are great and our babies are all miracles. hunter already seems like quite the fighter!
I am sorry for the loss of Parker, and pray that Hunter continues to stay strong! I would ask the Nurse Manager or the Charge Nurse, if Hunter can be assigned to a couple primary nurses. While there were occassions when Hailey had a different nurse if one of her assigned nurses had the day off, it was really nice to have nurses who became familiar with Hailey's progress. Those nurses also became familiar with our visitation patterns and the information/care we were looking for. It also helped with keeping Hailey consistent.
congratulations and condolences are in order. your life will never be the same again as with any birth or loss in life and just know that the ladies on this board are more than helpful in every way. they are a better support system than anyone in my life and i appreciated it the mose when in the NICU.
as for my story, my son was born at 25w and is now 5 months. along with a couple of other compliactions he had a grade 3 IVH on the left and grade 2 on the right. as of now there are no complications and it took about 2 months to clear completly. i have been warned that there is no way to know all the complications that can go along with an IVH until they are bigger but james acts just like any other baby (well kinda) but he laughs and coos and makes eye contact and knows what is going on.
you are not alone all though everyones journey is different we are here when you need advice, a shoulder to cry on or just to chat in general. the only advice i can give is to be an advocate for your son. get in there as much as you can and do what you can. when james started to look a little funny or was having a bad day, i was the one that had to let the nurses know because they didnt have him everyday and i was the one that knew when he was changing for the better or the worse. just trust your instinct and make them do what you want! your are the mom and he is your son. you call the shots! congratulations and let us know if you need anything!
I am so terribly sorry for your loss. Dealing with the grief of your loss and the joy of your son still fighting will be tough. Just remember that you are not a bad mother to Hunter when you feel sad and are grieving Parker. And you are not a bad mother to Parker when you are happy and smiling with Hunter. Don't feel guilty for any emotions you have. NICU life is stressful and I dealt with only a tiny portion of it compared to what you are going through. Forget about everything right now except your own health and your sweet son's health. Let people help you. Cry, rest, laugh, complain, and rejoice whenever you need to and on your own terms.
My heart goes out to you and I will be thinking of your sweet boy as he fights on in the NICU.