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Questions and Frustrations

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Re : Questions and Frustrations

Post by Dawn D » Mon Nov 05, 2007 03:00 am

Hi Tina, it's wonderful to hear from you and to know Joey is growing and gaining! The forums are a great resource for info and continued support, and if you need anything here locally, feel free to email me directly....there is a nice "team" of us here in PA that would be happy to be/stay in touch.

wishing you well as Joey continues to manage the meds and gets better from the reflux, etc. !

Re : Questions and Frustrations

Post by cindyh27 » Fri Oct 12, 2007 09:49 am

Tina,

Congratulations on your little baby girl Joey (love that name!) I’m so glad to hear she is improving everyday… 8lbs 14oz at her two month check-up is wonderful! My son had mild case of Laryngomalacia which he has since outgrown… he will be 8 months tomorrow… nothing like your daughter who had breathing obstructions… very scary! I’m so glad to hear her blue spells have since passed.

Thanks so much for the update! I hope you are feeling better too! Congratulations to all three of you :)

Cindy

Re : Questions and Frustrations

Post by joeysmommy » Fri Oct 12, 2007 06:20 am

Hi everyone! I'm Jerry's wife, Tina. I wanted to give you all an update as to where we are today. And to thank everyone for their support throughout this entire ordeal! My husband needed information and I couldn't help him with it, I'm glad you were all here for him. When I was on bed rest, I saw his first post, but hadn't seen the others, so when I read them I was a bit teary eyed. It wasn't a pleasant experience, but I would do it all over again if I had to -Joey is amazing!

Joey was released from the hospital after 12 days in the special care unit. Those 12 days were hard for me, as Jerry had said above...I was an emotional mess. But, I tried to save my breakdowns for when we were home or in the car going home. I lost it a few times in the hospital just out of shear frustration. Joey came home on an Apnea monitor and two medications for reflux (zantac & reglan). Long story short on the meds. Every time I gave her the reglan she puked, gagged, and twice stopped breathing. The two times she stopped breathing where bad. Luckily, I was right there and saw her. She would stop breathing, not respond to my touches, and then turn blue! The first time it happened I did what I needed to do and got her going. Waited for Jerry and Joey to go to sleep and then I spent about 3 hours crying. The second time I took her off of the medication. She has been fine ever since -no blue spells! She continued to have apnea spells until last month -wahoo! Last month, no apneas on the monitor download, but there were 21 brady cardias, so they want to continue the apnea monitor at least for another month. We are hoping that by the holidays she will be off of it.

At her two month check up in August, she was 8lbs 14oz and the doctors are happy with her development. When she was released, they wanted us to take her to a pediatrician ENT. She was 3 weeks old when we took her and she was diagnosed with Laryngomalacia (say that one 10 times fast!). This is what is causing the obstructive apnea and the reflux. Only time will take care of it and we think it is getting better -we can tell by the voice and congestion sounds that go along with laryngo. We see the ENT again in a few months for another follow-up.

All in all, things are going great. Joey is an incredible baby. She only cries when she is hungry (or has gas!), she's been sleeping through the night since she was two months, she's made her own schedule which typically involves a 9pm to 9am sleep schedule at night! I am back to work and Jerry is staying with her during the day. As much as he doesn't like not working, he is sooo enjoying spending the time with her. They have that father/daughter bond already and it is very cute.

Okay....enough babble from me! Thank you all!

Re : Questions and Frustrations

Post by Dawn D » Tue Jul 17, 2007 11:52 am

Hi Jerry, I am just now reading through these posts. So sorry I didn't see them sooner, but glad the others here have provided you with helpful advice/support. I hope that by now you and your wife have been able to welcome your daughter home and that everyone's health is well.

I live in Southeastern PA and my daughter was delivered at a Phila hospital ....so if by chance you check back in here, please send me a direct email (click my screenname). I (and I'm sure my husband too) can relate in many ways to the feelings and concerns you expressed in your posts.

Sending you best wishes.

Re : Questions and Frustrations

Post by anathor21 » Mon Jun 25, 2007 01:46 am

I agree with Julie - so much can't be expressed and can't be said. Being there does seem to be the most important part - and be able to listen to her, let her talk and cry and be willing to do the same with her.

Remember that the two of you have each other and should both pull together - i.e. be strong for her but don't be afraid to let her know that you too are feeling the strain and hurting too. Being strong doesn't mean you don't feel the losses or the pain of seeing your daughter in the NICU when you expected her to be home.

I also found it helpful to talk to my daughter when I visited her in the NICU - may seem silly given that she can't understand what is being said, but at least she heard my voice and I could practice saying things that were on my mind. She never has told anyone anything about those talks either [:)]

Hang in there - get out and do something special with your wife (doesn't have to be fancy - we started having regular 'dates' at a crepe restaurant across the street from the hospital that was open all hours and had no dress code).

Re : Questions and Frustrations

Post by julie f » Sun Jun 24, 2007 03:37 am

Jerry,

Many congratulations on the birth of Josephine Marie!!

I wish I could give you the right words to help you comfort your wife but the truth is, sometimes there are just no words. As cliche as it is, I found that my husband just being there helped. You may feel stupid that you don't know what to say but my guess is - is that she doesn't need you to say much, she just needs you to validate what she is feeling - overwhelming joy at the birth of your baby, but sadly coupled with sadness, anger, fear, frustration, confusion, etc. The loss of control over your own body and the things you "should" be able to do (have a 40 week healthy pregnancy that results in a healthy baby that comes right home with you) is very hard to reckon and the guilt that can come along with it (although we all know that there is nothing we could have done differently) is hard to resolve.

My best advice would be to be patient, and be honest. Telling her just what you've told us "I feel so stupid because I don't know what to say to her - I too want to cry every time I see my daughter, and I am as confused as she is..." might be a good place to start.

I wish your daughter a very very short NICU stay and I pray that you are soon updating us with her happy and healthy homecoming.

As far as uploading a picture goes - you can upload them to something like photobucket and paste the link here. Or, you can upload as an avatar: http://www.preeclampsia.org/forum/viewtopic.php?t=17592

Re : Questions and Frustrations

Post by padaddy2b » Sun Jun 24, 2007 02:03 am

Well, things continue to get better, and the baby is eating more and more from her bottle (though not gaining any weight yet). Today we had what we feel to be a little setback, though. We've been being told that she is doing well and everyone is happy with her progress, until today... We were informed that we need to go to the hospital on Monday for training to learn how to use the pules-ox monitor that our daughter is hooked up to and to learn how to insert her feeding tube and use it. Apparently, when they finally do let her come home (we still have NO idea when that will be), she will have a feeding tube and be on this monitor for some period of time (which we still do not know how long that will be). It destroys me every time that I go into the NICU to see her (which is several times per day), but I need to be strong for my wife who is having a TERRIBLE time with our daughter still eing in the hospital and not home with us... all she does is cry these days because she wants her baby home with us. I'm at my wits end - I feel so stupid because I don't know what to say to her - I too want to cry every time I see my daughter, and I am as confused as she is... Have any of you been throough this post-delivery ? If so, I'd really like to know how you coped...

Re : Questions and Frustrations

Post by sarab » Mon Jun 18, 2007 03:46 am

Jerry, your wonderful story has me in tears. The first time my husband and I got to hold our little girl was in the NICU on Father's Day 4 years ago. What an amazing gift for you on your first Father's Day!

I'm SO pleased to hear that everything went well and little Josephine Marie arrived safely! I pray that she learns to eat quickly and is home in your arms before you know it. I hope your wife also continues well with her recovery, and wish you all the best in the job search.

Keep us posted.

Re : Questions and Frustrations

Post by blythe » Mon Jun 18, 2007 10:46 am

Wow, what a ride! I'm so glad you have a healthy mom and baby, and a wonderful Father's Day gift of holding your baby girl!!! Thanks for letting us know, I always worry!

Congratulations!!!

Re : Questions and Frustrations

Post by christyleake » Mon Jun 18, 2007 09:41 am

Happy Father's Day Jerry! Congratulations! Our stories keep sounding more and more the same. I'm so glad the roughest part is over for you. Thanks for letting share the journey with you.

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