D-Junior

[D-Railer]

Little girl is holding steady. In a month her lungs will adapt fully to breathing air (this is the normal schedule for any kid) and at that time they will be able to better assess when she will need surgery because her heart will actually change a bit at that point... although I guess it turns out that the two main factors to watch for are 1.) is she eating and 2.) is she gaining weight. A lack of those means surgery sooner.

As for ian... he turned 3 today. Does this make anybody else feel old? Happy birthday, kiddo.

Three years ago:


Today:

[D-Railer]

My daughter is back in the hospital again... she's a 7 week old, with a heart issue that is causing some hurtles in treatment for a virus she managed to pick up called "RSV." She could be there a week, she might be there as long as a month. There are times when she doesn't take a breath because her lungs are plugged up with the virus and the amniotic fluid that she has not had time to grow out of... (which happens at around week 8 or so.)

My wife is going to spend literally all of her time with her. I basically can't.

Raising my son has been three years of light and laughter, with moments of frustration. Raising my daughter has been seven weeks of heart-break, hoping, and praying.

[Ollie Cromwell]

Keep your head up, D. Wiki says its pretty common in infants. I know that doesn't help much, but its all I got.

Keep you in my thoughts.

[D-Railer]

Thanks Ollie :-)

She's still in the hospital. Been there for a week.

I've been keeping up hope pretty well -- keeping my chin up, as you say... not so much, lol. Trying.

[D-Railer]

She's on day 11, today...

The good news is that she's doing better and better! They're giving her a 90-95% chance that she will come home tomorrow.

[D-Railer]

She's home now Thanks for your thoughts

[D-Railer]

Last Tuesday Ian was in diapers. Wednesday he asked to be put in "big boy underwear." By Saturday no accidents. By Monday we found him on the potty, alone, going to the bathroom by himself.

[kevstev]

Originally Posted by D-Railer

Last Tuesday Ian was in diapers. Wednesday he asked to be put in "big boy underwear." By Saturday no accidents. By Monday we found him on the potty, alone, going to the bathroom by himself.

Did you hand him a newspaper at least?

[D-Railer]

Ian continues to be the definition of an awesome little boy. He blows a fit as three year olds often do... but he just... glows... the rest of the time. Makes me very proud.

Nina is beautiful and sweet, but the issues continue, and I admit there's a coward in me that is having problems handling them. The chromosome test came back "normal" when she was born, but I have yet to feel at ease. I love her, but at the same time I want to pass this message on to you all: Life can get complex, and quickly.

[FiD]

Wow that was a dramatic 2 pages of posts. Few things D...

First your daughter is absolutely beautiful! Trust me I can spot a cutie when I see them. Secondly, I'm so very glad things seem to be working out with her health, I'm sure your still on edge but it looks like things are mucho better now. Third, look at that little man! Wow! I read he was three and was like "cool" then I saw the pic! Wow, I do feel old. As for the "potty" thing that is very cool. We only had one that it went down like that, and even then it wasn't that smooth. Apparently he likes his privacy and non wet pants....good call kid.

As for the Fid family the 5 girls are doing well. They are all over 7 now, so life is much easier. Sure we have soccer, softball, basketball, school plays/concerts, and those things take up my time but things are so much easier. Look forward to that, but also enjoy them now...which it seems you do. They grow up fast and with a step daughter that is 16 going on 17 and her moving out is on the horizon I can't help but think about the other girls. They will all be 18 and most likely gone by the time I'm 42. So that is kind of sweet.

[D-Railer]

Originally Posted by FiD

Wow that was a dramatic 2 pages of posts. Few things D...

First your daughter is absolutely beautiful! Trust me I can spot a cutie when I see them. Secondly, I'm so very glad things seem to be working out with her health, I'm sure your still on edge but it looks like things are mucho better now. Third, look at that little man! Wow! I read he was three and was like "cool" then I saw the pic! Wow, I do feel old. As for the "potty" thing that is very cool. We only had one that it went down like that, and even then it wasn't that smooth. Apparently he likes his privacy and non wet pants....good call kid.

As for the Fid family the 5 girls are doing well. They are all over 7 now, so life is much easier. Sure we have soccer, softball, basketball, school plays/concerts, and those things take up my time but things are so much easier. Look forward to that, but also enjoy them now...which it seems you do. They grow up fast and with a step daughter that is 16 going on 17 and her moving out is on the horizon I can't help but think about the other girls. They will all be 18 and most likely gone by the time I'm 42. So that is kind of sweet.

What an awesome family you have there, FiD! The little one with the blue hat looks like she has inherited your smile.

It is funny, I looked at what you said there about 42 and realized that 42 is only two years away for me. Ian will be 5. Nina will be 2.5... I'm going to be 58 before my youngest leaves. lol. LOL. Sigh. (Well and the saddest part of that is I still don't know what's up with Nina entirely... For all I know she won't be leaving home. Ever.)

Btw here's a more recent pic:

[FiD]

I don't know man. I see that pic and that is the healthiest and cutest looking sick kid I've ever seen. She seems like a fighter. Be tough for her dad she needs you!

[D-Railer]

Originally Posted by FiD

I don't know man. I see that pic and that is the healthiest and cutest looking sick kid I've ever seen. She seems like a fighter. Be tough for her dad she needs you!

Thanks FiD, lol... The latest news on her is this... two of the four holes in her heart closed by themselves, which is pretty nice news. She will still have to have open heart surgery within a year, however.

Her neck is not strong and she has problems turning it in a direction. As a result she's had to lay in pretty much one spot when you lay her on her back. Despite us trying to move her around, guess what? Skull deformation. So she'll be wearing a helmet most likely.

And this is why I have difficulty believing she's fine. If you just do a google search on any one or two of her symptoms, you end up with a page full of chromosome issues. (Heart, single hand crease, neck issue, etc.) Again, her chromosome test came back "normal" but there is also such a thing as "mosaic" downs. It just means "partial" downs. And at the end of the day, if she has that, it still means a lot of the same adjustments for the family.

Guess we'll see. I hope and pray that somehow she just has a lot of symptoms of chromosome issues, and no actual chromosome issue. It is bad enough that someday I have to have a "if you want to have kids, they may inherit your heart issue" talk with her.

[FiD]

I feel you man. The one in the pink hat in my pic, has some disabilities. It's hard to cope with. She was not as sever as Nina but we are learning and adjusting. She has cognitive and language disorders. The Doc's said it's kind of like she had a stroke, not as sever but she has a hard time with things, memory, speech, and word finding. We did the chromosome tests as well, they all came back normal as well. She had some breathing issues the first few weeks after birth. It's not easy stuff to go through and people really can't relate unless they do it. Hell even I can't relate to your situation as it seems to be more than I had to deal with. Our other daughter in the blue hat was premature which had all it's own difficulties. Man....kids....ugh....what can you do though? Nothing. Just do everything you can and hope for the best. I'll keep you guys in my thoughts man.

[D-Railer]

Originally Posted by FiD

I feel you man. The one in the pink hat in my pic, has some disabilities. It's hard to cope with. She was not as sever as Nina but we are learning and adjusting. She has cognitive and language disorders. The Doc's said it's kind of like she had a stroke, not as sever but she has a hard time with things, memory, speech, and word finding. We did the chromosome tests as well, they all came back normal as well. She had some breathing issues the first few weeks after birth. It's not easy stuff to go through and people really can't relate unless they do it. Hell even I can't relate to your situation as it seems to be more than I had to deal with. Our other daughter in the blue hat was premature which had all it's own difficulties. Man....kids....ugh....what can you do though? Nothing. Just do everything you can and hope for the best. I'll keep you guys in my thoughts man.

Thanks FiD... I know exactly what you mean... likewise I will keep you in my thoughts. The part about "people really can't relate" is the interesting part. It is so easy to tell somebody "toughen up, buttercup" when the advice-giver get to walk away after giving the advice. It is totally different when you see where your life, the lives of every family member, have been altered as a result... every. day. And we haven't even got to that point. I'm praying we never do.