"To eat is a necessity, but to eat intelligently is an art." - La Rochefoucauld

Tuesday, November 07, 2006

Ben & Jake, 7 ½ weeks old

We finally have some answers as to why Ben is still having breathing issues…and hopefully, a solution. Sunday night they did a multi-channel test to see if Ben’s breathing issues were central (related to the brain) or obstructed. Acid reflux, a stuffy nose, and other miscellaneous reasons can cause obstructed Apnea. Ben’s breathing issues are obstructed, which we were told was the better of the two.

In Ben’s case, the obstruction is fluid in his lungs. The doctors are calling this diagnosis “Chronic Lung Disease.” This sounds very scary but we were happy to find out that Ben will be able to play sports and bounce around like any other two year old. He has a very mild case of CLD. Most preemies with CLD are still on the vent and oxygen, neither of which Ben is on. They said this is very common in babies born under two pounds two ounces.

Where to we go from here…Ben is now on a diuretic to rid the extra fluid from his body. We started this yesterday at 2:00 p.m. and can already see improvements. They are going to try to take his cannula out today and hopefully we will see great improvements in the next few days. We hope he will be home by the weekend or early next week. We won’t get our hopes up until he is actually in his car seat and on the way home.

The doctor said he may have to come home on the diuretic but predicts Ben will be off of any meds. by six months old. He also said he should have healthy, normal lungs by the time he is two if not before. This will change our plan of care for him. If he catches a common cold, it can put him back in the hospital. We have to be extra careful with him and exposing him to sick people. I thought I was paranoid before…now I really am paranoid.

When the doctor told me about the Chronic Lung Disease last night I was pretty upset. But when I think about what our prognosis was eight months ago, this seems like a walk in the park. I am glad to know this will not cause any long-term problems for Ben. It just breaks my heart to see my child in distress…whether it is gas pains or breathing issues. You feel so helpless as a parent. You just want to take away their pain, but don’t know how. Thank goodness we have wonderful doctors and nurses.

Our nurses have been so great. Two of our favorite nurses, Casey and Jill, actually gave us their home phone numbers. How nice is that!! I talked to Casey about ten times the night Jake came home. Jill has also been such an advocate for the boys. She treats them like her own. They cuddle with them when we are not there. They make the parents feel at ease. We are so lucky to be at U.M.

Hopefully we will have some good news soon!
Thanks, Danielle & Kevin

8 comments:

Shannon said...

I am so glad to hear you have a diagnosis for Ben. As you know the difficult and trying time is finding the problem. In Ben's case you know the issue and it is something that you can deal with. Ben is in a great place and soon to be in a better place, at home with his family. I am glad to hear the boys are doing well and just remember how far those boys have come and know the issue you have can be resolved. Try ;and deal the best you can day to day and everything will be terrific. You guys are freat parents and will do your best to keep taking great care of them! Give them a kiss and a hug for us. Take Care!
The Cirellas

Renee said...

Thanks for the update, I've been hoping Ben would be home soon. You have a great outlook on his condition which is always hopefull. So this winter will be "snuggle" time for your family. You can introduce Ben to the "public" when his lungs are bigger and better!

Hang in there,
Renee

Kara said...

It must be a relief to finally know what is going on. I believe Ben should qualify for the RSV vaccination since he has a lung issue. My girls met all areas but the lung issue, so they did not get the vaccination. I would talk with the pediatrician about it.

I can't wait to see pictures of both boys home!!!

I'll continue to pray for you!!

Anonymous said...

Hi Danielle and Kevin,

I'm glad to hear the Doctors diagnosed what Ben's issues are.
Just from reading articles about CLD makes it look like there will be a positive outcome. Hang in there. Ben is in the best of care.
Both boy's should qualify for the Synagis (RSV) shot because of their gestational age.

We are still praying for healthy babies.

Stay positive.
Keep smiling.

Take care, John
TTTS Dad

lynn said...

YEEEEEEEEEEEHA!!!!! Ben will be home very soon - scary prognosis initially - BUT like you said Danielle, 8 months ago was the worst!!!!! hugs all around.... prayers ongoing!!

Anonymous said...

So glad to hear there is a diagnosis for Ben. I think both of these boys have proven that they can overcome anything and will live a very happy and healthy life! Can't wait to meet them both.

Mindy

Jenny said...

Hi. It's me, Jenny, the mom of 2 twins (who lost my daughter). It's great to hear that you have one little one home, and one to go!
My son also has CLD, and he was almost 3 pounds at birth. It seemed as though he was on diuretics nearly his whole hospital stay, and had apneas up until the week before he came home. But once he was home, he was fine.
Benny is doing great, he is just really small still. Once Casey (my son) got over 5 pounds, it was like the apneas magically went away. You're right, weight makes a huge difference.
Hang in there, you're doing great. And once he gets a little bigger, he will be better.

You're right about being ultra careful once the babies are home (with both of them, really). We are hyper-vigilant about germs and hand washing and my son just got his first case of RSV with Bronchiolitis. He's now 9 months old. You really can't be too careful. BAN EVERYONE who even THINKS they may be sick. You may have to get mean...we did, hehe. Their little lungs are so fragile, especially with the CLD. Your boys will get Synagis shots to help protect against RSV. My son got his 2 weeks before he got sick and the doctor said it greatly lessens the illness. Thankfully, he wasn't hospitalized.

Take care, and please email again if you want to chat or just vent. I was happy to help during your pregnancy, and can be here for you now, too. Us preemie parents need to stick together!

Jenny
jkennim@hotmail.com

Anonymous said...

I'm so glad to hear that they have discovered why little Ben was having difficulties. I have been showing your blog to people at work and they are always asking how "Little Benny" is doing. They laughed when they saw Jake's smiling face in his car seat and said "See he is happy to be going home" You will soon have both home and life will never be the same for this is where you strap on those rollerskates try to keep up with them as they grow into very interesting people.

Love to you all,
Aunt Margaret