Saturday, December 23, 2006

Day by day

Quinn is still off of the pace maker and his heart rate changes every few minutes, no matter what he is doing. He still has times when it skips every other beat, and times when it beats normal. He is still taking moms milk through the tube in his nose, but has had to cut back at times do to gas build up in his gut. I am guessing that the gas is what bothers him the most, since he cries the hardest when his belly becomes distended.

There have been times when I would make jokes about my friends and family who would gleefully celebrate every little thing their child does. Well, now I cheer my son on whenever he passes gas. If he doesn't, he won't get more of mom's milk. I asked the doctors if there were any significant risks of staying on IV nutrients for long periods. They mentioned potential liver problems and development of slow motility in the digestive system. (I'm considering sending a sign to my brothers goquinngo website that says "fart Quinn fart!")

The staff here at the hospital have become increasingly watchful and perceptive of Steph and I. They get somewhat concerned that we don't often leave the hospital. We have been visited by a minister and a social worker who check on our moral as well as do all the nurses and doctors. Our situation can be tough, but it certainly isn't bleak.
People talk about my son and the things we've endured as a family putting things into perspective. Being in an ICU has helped me relate to that. I've encountered things I've never had much exposure to. I see other new parents coming in with children having a wide range of conditions. I've met parents of infants with cystic fibrosis, and have seen babies with physical deformities and other afflictions that force me to marvel at how fortunate good health is. I've acquired a better idea of how many things need to go right in order for a baby to be born healthy. I'm thankful for the success' Quinn has had since he was born and I get excited about the life he has ahead of him. Though Steph and I have had to find ways to cope with frustration, we know enough to be grateful.
As I expected from well before he was born, patience has been one of our real challenges. But we have a son who has overcome much, and is surrounded by doctors with tremendous capability. He still has a bit of a journey toward recovery. But if nothing else... at least he's got his looks.


GoQuinnGo said...

He is so perfect in my eyes. If I can stop sobbing and blubbering like an idiot I'll get to the rest of this message. ok.

If you want some "Fart Quinn Fart" signs, we aim to please.

(there's no way we're letting someone in this family get away without mastering the art of Ju-poop-su)

pop said...

Ju-poop-su???!!!?? Laughing and crying at the same time. Dan, tell Quinn that practice makes perfect. And I'm sure he'll take after you. "I don't think that was me."

Love you Dan, and you too Joe. Thanks for helping with the lighter side.

Pop and Kim

GoQuinnGo! said...

Request granted.

Lily's Mommy said...

Keep eating Quinn - you'll get the hang of it! We love the video of you playing with your tongue, trying to figure out what it does. In this video, you look like any other one month old, and it makes us smile to see it. Handsome little man!
The Hobbs

Robin said...

Hi Steph: Have any of the LC's suggested any modifications to YOUR diet to reduce Quinn's potential gas???? Here's the retired LLL Leader speaking, okay?

My suggestion would be to cut out the following (one at a time until there's some improvement): dairy, cruciferous vegetables, tomato products, vinegars/salad dressings, acidic juices

And then there's homeopathic colic tabs and Mylicon---both very useful for TYPICAL babies!!! Warmth on belly, gentle clockwise massage(may be impossible with incision), holding him in colic-hold over your forearm face down (again may be impossible because of incision), burping more often than usual, smaller feedings more often, gentle bouncing with him up on your shoulder,and to remember that MANY babies struggle with gas. And with prolonged crying, all babies swallow air, so he's got that to deal with. If he can be more upright, that can help.

Hope this is helpful! Love, Robin

Gib Brogan said...

Our daughter Ellie has GI issues and had bad gas for months until we learned to use the G-tube to let the gas go.

My advice is to ask about either venting the G-tube to a gravity catch or periodically venting his G-tube with a 60 cc syringe. It helped us through many months of very bad gas and could help you if his gas is in his stomach.

Some days Ellie would blow bubbles for five minutes when her belly was very bloated and hard. There were months that we vented her every hour or two to keep Gut Girl happy.

About the concern from the staff, it does get overwhelming sometimes to have them asking about you so often but they are there to help. They will also understand if you tell them that you don't want to talk or that you will find them if you need them.

MY only other piece of advice is to tell you that there is a good gym on the far side of the Children's parking lot that is free for parents. A workout is a good thing and they have real showers. It can be a nice break when you have an hour.

Gib Brogan

kristin said...

Gosh, he's looking better every day! I can't wait until you guys are home and I can spoil him with hugs & kisses. Soon enough...soon enough. I miss you all terribly.

kristin said...

Merry Christmas Quinn! We had a wonderful visit with you today...even if you did sleep through it all. We're so proud of you for coming so far. Santa is sure to have you on his Nice List for many, many years to come!
Aunt Kristin & Cousin Mary

Jess said...

Merry Christmas Marshalls! I hope you are able to get a little holiday spirit and that Quinn is doing well. Can't wait to see you again!
love, jess

Alex and Jessica Bariso said...

Merry X-mas little Quinn, or I should say strongh little man.
We wanted to wish you the best and know that we pray for you daily.
Keep fighting and amazing everyone.
Jess B.

PS Isabelle has the same problem passing gas, you I am with your dad fart Quinn fart.
We have big celebrations with Isabelle passes gas.

Anonymous said...

Merry Christmas Marshalls and Little but very strong Quinn..

Prayers are still with you

Anonymous said...

Merry Christmas Quinn! It is so good to see you moving; Dan and Steph, please keep sending those videos! It's hard not to keep crying when I'm looking at him, but it's OK! It's as close as I can get to seeing and holding him in person! I agree with Robin; Nohno Mary told me when I had my kids that when one's pregnant or nursing, you don't eat anything acidic 'cause everything you take goes straight to the baby or it's milk! Hope Quinn gets to feeling better real soon!

Love you all, auntie Nik

Anonymous said...

Merry Christmas little guy! I know It must be a bummer to be In the hospital on Christmas. We continue prayers for you Mom and Dad everyday. You know there once was a baby born in A manger with only a few items to give him comfort. I think babies that are born into the world like you are born to do great things. Just remember the king of the world overcame some pretty big things too! His mom and Dad had to have faith that all would be o.k. just like your mom and dad. So stay strong Quinn and continue to show mom and dad that your a tough little guy. Praying for continued miracles for you and Peace and Blessings to your mom and dad. MERRY CHRISTMAS MARSHALL FAMILY..... Love Maria Rosado