tough first year... long months at hospital :(

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tough first year... long months at hospital :(

Postby mrsjoh » Thu Feb 19, 2009 8:30 pm

:( my baby is still in the hospital since his birth is Nov., I am very blessed to have him and love him to pieces. It is hard to watch him go through procedures, and everything else. I am at the hospital every day and frankly I don't want to be anywhere else. When I am not with him my heart is so terribly sad, thinking of him missing me.

We had some friends get preg recently and they just had their nt scan, of course perfect, dh and I both feel anger and resentment towards them. We talk amongst ourselves and are able to communicate everything which is great.

I just wish this were easier. It is just so unfair. I hate seeing new moms with their babies, healthy babies, and they just get on my nerves. I wish I could have my baby with me all the time. :(

I am sleeping home tonight as I really need the sleep and just feel very down
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby mamalynn » Thu Feb 19, 2009 10:13 pm

i am so sorry that you are away from your baby. i can only imagine the emotions that flood through you. it is difficult to have a child born that is hospitalized. i only got a few tastes of it, but i remember simliar feelings. i am glad you are home to rest, you most likely need that. give into the exhaustion and you'll be stronger for the next day. you have to remember and believe that your child is a fighter and so are you. hugs and prayers for you and your LO mama!
michelle 41, dh 44,
pj 5 diagnosed with down syndrome & av canal defect of the heart (repaired 2007)
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Postby JLT » Thu Feb 19, 2009 10:19 pm

I can relate to you - although we haven't had as rough of a road as you all - it's still difficult to see everyone around you have healthy babies without even a hint of a worry about anything being wrong. My son was born on Oct 3 with CHD (we did not know during my pregnancy) - Shone's Complex. We were initially told he had HLHS and Shone's Complex, but we found out that his left ventricle was growing and bigger than initially thought. He was 10lbs 10oz at birth and we we ecstatic that we had such a beautiful little boy. Three days later our world crashed in when we were told he was being taken to Children's immediately. We spent a month in Children's and he has had two heart caths and one closed-heart surgery (at 19 days old). Based on his last heart cath (Feb 9), we are probably getting closer to his first OHS for valve repairs/replacements. It is difficult being at the hospital because you can't be with your child at all times. I struggled very hard with that and we were camped in the parking lot, only a few steps away from the front door. I still cried all the time because I didn't feel like a mom at all - but believe me - you're the most important thing to him right now. I can't imagine how hard it is to be in the hospital for that amount of time, but I do understand the anger you feel towards others. One of my co-workers 17 y.o. daughter was due 3 weeks after me with an unexpected child - and as you can imagine - perfectly healthy. I would not wish any problems on anyone else's child - but I often feel that it's unfair because I did everything possible to have a perfectly healthy and normal pregnancy and this girl was smoking weed, etc... you name it. I shared a lot of my anger and resentment with DH and he kept reminding me that things could be much worse - and it's true - but you still can't help wondering why these things happened to your child. Stay strong for your sweet Jasper - he's adorable, by the way, I've read some of your blog and looked at his pics!
ME 28
DH 31
DS 1 - Born with a congenital heart defect - Shone's Complex
First heart surgery @ 19 days old
Next cardiologist appt 01.13.11
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Postby ncgirl » Fri Feb 20, 2009 8:44 am

I have been following your blog, and I admire you so much for your strength!! I don't know what you're going through, but I did have a scare during pregnancy with my dd for a possible problem, and I do remember worrying and being resentful of my other friends for having great scans and no problems, and healthy babies while I was worrying about mine. Everything did end up being ok with dd, but I do remember the fear,resentment and the worry (i chose not to do the amnio) for the rest of my pregnancy...it was scary, and that's very normal. You are doing a good thing by talking through your feelings! But, your little Jasper is SO lucky to have YOU! Maybe those other mamas with the healthy babies couldn't be strong enough to care for such a blessing as Jasper...I know it must be hard, but I'm praying for you that soon you will be able to take your little man home as he grows and becomes stronger. Jasper is so loved...He's so very lucky to have such wonderful parents...He is adorable, and I love seeing his pictures! What a sweet face. Hang in there. :hugs:
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Postby ZiggyGirl » Fri Feb 20, 2009 8:49 am

hugs, mama. I understand the jealousy at other people's healthy babies. Micah's not here yet, but he will be whisked off to Children's as soon as he is because of his spina bifida. We don't know how long he'll be there, although it won't be nearly as long as your little guy. Praying for you.
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Postby dixiechicken » Mon Feb 23, 2009 8:24 pm

I'm so glad to see a post from you! I think of you often when I'm on here and wonder how you're doing! Guess I could catch up on your blog, huh??? :oops: I really don't know what to say to make things any better. I honestly don't know how you've done it this long. I know you do what you have to, but our 17 day stay was too long for me! My heart breaks for you. Jasper is very, very lucky to have such a loving and dedicated mommy. It's a roller coaster ride that you'll probably always be on. I know I am anyway. I get very jealous of people who have children with now problems. I have a few friends who have had babies after me, and their kids can do things Wade can't. It is very hard, and I wish I could say it gets easier. It sometimes takes me by surprise though. Sometimes I'll be going along just fine, then all of a sudden I'm in tears.

I'd say the most important thing to do is get your rest and let your emotions out! It's okay and normal to feel jealous, bitter and upset. You got a raw deal, and it sucks! Grieve, grieve, grieve and don't let anyone else tell you otherwise! Hugs to you and Jasper!

ETA: I just went and looked at a few pictures on your blog. Jasper just makes me cry--tears of joy, not sadness. He has such a sweet, beautiful, peaceful face, and he's such a fighter. He really just tugs at my heart! Through all of your struggles, you are so blessed! Prayers to you and your family!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby momtosix » Thu Feb 26, 2009 6:09 pm

He is beautiful.i am sorry you are going through all this.Hope he comes home real soon.

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Postby Sheytoon1boof » Sat Feb 28, 2009 11:05 am

Hi, I am currently trying to conceive (and am possibly pregnant again), but I popped in here, because I am/was the mom of a heart baby. I read most of your blog, and your son is beautiful! It looks like you may get to bring him home soon. I am so excited for you! I also wanted to let you know that I know, too, what it is like to live with your baby in the hospital. Our son Sam never got to come home. He would have probably had a trach put in eventually, but he didn't quite get to that point. He fought really hard but had nothing left by almost four months old. He had HLHS, DORV, Hypoplastic Right Lung, vein atresia (his veins going back to his heart from his little right lung were just completely missing - very, VERY rare). It was so hard - and I ended up going back to work part time when he was two months old, and he couldn't get off the vent (they hadn't really discovered yet the extent of his lung and vein problems - when he passed, they had been trying to decide whether or not to remove his right lung completely, and re-route everything, and then see whether he would need to be trached or not). I was trying to save time that I could take off later when hopefully he would get to come home. It was a relief to go to work in some ways, to get a break from the hospital, but then I missed being with him, so much. So I would hurry back to the hospital after work (I worked 45 minutes away.) It's so, so difficult.
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Postby PixieB » Sat Feb 28, 2009 10:20 pm

Having a long term hospital baby is utterly heartbreaking. Our baby girl was in hospital 85 days, and I know plenty who were in longer.

It's immensely frustrating seeing other mums with their regular healthy babies, their picture perfect birth experiences and remarkable lack of any complication.

Grieving takes time. The ambiguous loss link is really useful for finding the words to describe the grief/joy that you're likely feeling.

What got us through: doing things that helped me feel useful. I expressed milk like it was going out of fashion, and made calligraphic name tags for the cribs for each new baby that would come in. It became my routine, I'd come into hospital, say hello to my baby in a box, ask the nurse how she'd been overnight, then pick up name cards and my calligraphy pens and do a circuit of the NICU to see if there were any new babies needing special tags.

And look after yourself. It's so hard feeling so distanced from your baby, but the more you involve yourself the better your bonds. The more you look after yourself and make sure you sleep and eat and drink properly the more energy you'll have to give your precious little boy each day.

Teach yourself a new crafting skill if you can. Something you can do whilst sitting by his crib. Plan and make something special for Jasper that you can be proud of. That sort of sense of achievement really does make a difference.

Avoid anyone who makes you feel guilty, or who starts sentences with "You should be thankful you're not x,y or z". Ask a good friend (someone who doesn't mind if you have to cancel at the last minute) to organise some good adult conversation time where you can reconnect with who you are and your community. You still need to feel human, particularly when you're under all this stress.

You're a good mum, and you'll have your little boy home soon. Then he's all yours, no more asking permission, no more checking with nurses. Yours to hold whenever you or he wants or needs it. He's you're son, and you're his mum.
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby kated » Sun Mar 08, 2009 7:38 am

I just wanted to let you know that I have been there...and it does get better! My son was at Boston Children's Hosptial for about 3 months after birth - 8South was my home for most of that time! Jack had TAPVR - open heart surgery at 4 days old (as soon as they diagnosed him) and a pace maker implanted 3 weeks after that. During his stay, he had a tough course - he failed extubation 3 times, and went home on oxygen (for a short time). It is exhausting spending your days in the hospital - just wishing for time "alone" with your baby and to do normal things! You need to get away, and as soon as you do, you feel guilty - it is all normal. Today, Jack is almost 2 and is running around happy as can be - He is totally adjusted, smart as a whip and loves his mommy and daddy to pieces - He is even adjusting to life as a big brother (his lil' brother was born Jan 6 - compleletely heart healthy). Just trust that you are a great mom, your baby is at the #1 hospital for pediatric cardiology and heart surgeries,and your baby knows how much you love him....He will have a Great story to tell one day! And trust me, even though you will never forget what it was like to live day by day in the hospital, 2 years later - it seems like a lifetime ago! You will make many new memories in your many, many years that you have him home with you! Best of luck
- Kate
DS - Jack - April 2007
DS - Thomas - January 2009
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Postby mrsjoh » Mon Mar 09, 2009 3:16 am

oh my ladies thank you! my heart goes out to all of you big hugs

we are home for a couple of weeks! yeah, it has been wonderful! we go back in for a small surgery for his skull on the 18 mar, but we should't be there too long, although , things always creep on,

saying an extra prayer tonight for all you ladies
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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Postby mamalynn » Mon Mar 09, 2009 10:02 am

mrsjoh wrote:oh my ladies thank you! my heart goes out to all of you big hugs

we are home for a couple of weeks! yeah, it has been wonderful! we go back in for a small surgery for his skull on the 18 mar, but we should't be there too long, although , things always creep on,

saying an extra prayer tonight for all you ladies

so glad he is home with you. have you noticed any changes in home since he has been home? i know that pj was much more relaxed and content once he came home.

prayers go out to you all for the upcoming surgery.

oh and i love the new siggy pic!!!
michelle 41, dh 44,
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Postby mrsjoh » Thu Mar 12, 2009 1:37 pm

wow in just 10 days what adifference, so relaxed and already blossoming...
we have to go back on the 18 mar for his cranio surgery but hopefully that won't be that long,

he is really thriving at home :)

thank you everyone!
Jasper born Nov 25, 2008-Feb 23, 2010 www.jaspersheart.com
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