Things have been going pretty well for our little Sarah. She is now over 9 Pounds. She sleeps, eats, Poops, Cries and sleeps, just like a baby.
We have been having some issues with her enzyme intake. She has been taking very small quantities to help her digest food. Every time we increase the enzymes, she starts throwing up. The enzymes she is taking are made of pig intestines. I am hoping that we can switch her to Ultrace, which is a synthetic enzyme, and maybe will be better tolerated.
Will takes Ultrace and has never had any problems.
We took Sarah to Galena this weekend. She did great, although I think the ride was a little long. So, on the way home, we stopped off in Rockford for dinner.
Things are good. This week is a different doctor every day, but so far, so good.
Tuesday, October 23, 2007
Friday, October 12, 2007
Sarah @ Home
Sarah has been home for a week now. I have been waiting to get some good pictures to post, but with all the buzz around, we haven't had too many opportunities. The kid eats around the clock!!
She has had a few "Issues" with tolerating her enzymes. The nutritionist gave us instructions to increase the levels of enzymes (almost doubling) from the previous level. We drop some granuals into applesauce and feed her before she gets her bottle.
She did fine with 4 "beads", but threw up EVERYTHING when we went to 8. Then, she didn't like 4! We have since gone back to ground zero and started more gradually giving her the enzymes.
Christina was very upset as throwing up is a sign of another bowel obstruction and that can be bad. So, I will continue to monitor that process. She has been gaining weight and the doctors are pleased.
Sarah has had a number of appointments with the doctors this week and has had to get 4 shots. This also could be affecting her enzyme tolerance, so we will see.
I saw that the Nobel Peace Prize for Medicine went to some folks working on genetically altering mice to exhibit human diseases. In all the articles, they mention CF being the main disease. I found out that the CF Foundation funded one of these doctors efforts. So, thanks to all of you who have given to the foundation over the years and come out to our events. YOU funded Nobel Peace Prize winning research and you should be proud of that!!!!!!!
She has had a few "Issues" with tolerating her enzymes. The nutritionist gave us instructions to increase the levels of enzymes (almost doubling) from the previous level. We drop some granuals into applesauce and feed her before she gets her bottle.
She did fine with 4 "beads", but threw up EVERYTHING when we went to 8. Then, she didn't like 4! We have since gone back to ground zero and started more gradually giving her the enzymes.
Christina was very upset as throwing up is a sign of another bowel obstruction and that can be bad. So, I will continue to monitor that process. She has been gaining weight and the doctors are pleased.
Sarah has had a number of appointments with the doctors this week and has had to get 4 shots. This also could be affecting her enzyme tolerance, so we will see.
I saw that the Nobel Peace Prize for Medicine went to some folks working on genetically altering mice to exhibit human diseases. In all the articles, they mention CF being the main disease. I found out that the CF Foundation funded one of these doctors efforts. So, thanks to all of you who have given to the foundation over the years and come out to our events. YOU funded Nobel Peace Prize winning research and you should be proud of that!!!!!!!
Friday, October 5, 2007
Sarah is Coming Home Today
Sorry for the delay in updates. We have been really busy with the charity event and getting Sarah ready to come home.
She has been doing really well. Her wounds have healed and she is gaining weight and getting stronger.
There have been a couple of delays in her departure. The doctors have been monitoring her growth and playing with her nutrional cocktail. So now, just shy of two month, she is 8lbs. 8oz, healed, growing and pooping the right color. Good to go.
We have encountered a number of new friends in the NICU. Nurses, doctors and other parents all with their own stories and problems. Our stay was longer than most, but not nearly as long as others. I feel great that we are going home and feel for those not going home.
So, in a few minutes, Christina and I will go and bring Sarah home. I have NO idea where we will put her!!
She has been doing really well. Her wounds have healed and she is gaining weight and getting stronger.
There have been a couple of delays in her departure. The doctors have been monitoring her growth and playing with her nutrional cocktail. So now, just shy of two month, she is 8lbs. 8oz, healed, growing and pooping the right color. Good to go.
We have encountered a number of new friends in the NICU. Nurses, doctors and other parents all with their own stories and problems. Our stay was longer than most, but not nearly as long as others. I feel great that we are going home and feel for those not going home.
So, in a few minutes, Christina and I will go and bring Sarah home. I have NO idea where we will put her!!
Wednesday, September 26, 2007
Long Overdue Update
Sorry for the delay, there has been a lot going on.
Sarah's recovery from surgery has gone well. Each day I see watch the nurses and doctors check her belly and redress the wound. The two holes that used to be where the stomas protruded were sown up on the inside, allowing the wound to "Fill In" from the outside. It looked kind of strange, but not too unsettling.
Each day the wound fills in more and more. Sarah doesn't like the redressing, and screams when it is done. I remember Will having the same attitude about it. But, other than the redressing, she seems to be in good spirits. She is playful and even cracks a smile from time to time.
The feedings, on the other hand, have been more of an issue. The first couple of Pregestimil feedings ended up in my lap. I had to carry my original shirt home in a bag Monday and Tuesday. Sarah eats very quickly and gives it back even quicker. When she is more regulated, she can hold the food down.
When she threw up yesterday, I was a little frustrated. When Will throws up, it means he has a blockage. I know there are many reasons why she might be puking, but I could not get it out of my mind that it might be more severe.
This morning, however, I got "The News". Every CF Parent gets "The News" at some, or many, points. It is news that makes you smile because it indicates that your fears have been calmed. You wait for "The News" for weeks and eagerly anticipate the day when you can get "The News". CF Parents giggle when they tell their story of "The News".
Mine came this morning. I called the nurse watching Sarah and she said, "Sarah took her last feeding well and then had a huge stool. It was really stinky." Stooling is the sign that says Sarah is processing her food and pushing it all the way through the system. She may not be getting any nutritional value from the food, but at least it knows the way from the front door to the back door.
As many of you know, there are signs that say "Your kid is going to be alright". It feels like someone just took a pallet of bricks off my chest.
Sarah's recovery from surgery has gone well. Each day I see watch the nurses and doctors check her belly and redress the wound. The two holes that used to be where the stomas protruded were sown up on the inside, allowing the wound to "Fill In" from the outside. It looked kind of strange, but not too unsettling.
Each day the wound fills in more and more. Sarah doesn't like the redressing, and screams when it is done. I remember Will having the same attitude about it. But, other than the redressing, she seems to be in good spirits. She is playful and even cracks a smile from time to time.
The feedings, on the other hand, have been more of an issue. The first couple of Pregestimil feedings ended up in my lap. I had to carry my original shirt home in a bag Monday and Tuesday. Sarah eats very quickly and gives it back even quicker. When she is more regulated, she can hold the food down.
When she threw up yesterday, I was a little frustrated. When Will throws up, it means he has a blockage. I know there are many reasons why she might be puking, but I could not get it out of my mind that it might be more severe.
This morning, however, I got "The News". Every CF Parent gets "The News" at some, or many, points. It is news that makes you smile because it indicates that your fears have been calmed. You wait for "The News" for weeks and eagerly anticipate the day when you can get "The News". CF Parents giggle when they tell their story of "The News".
Mine came this morning. I called the nurse watching Sarah and she said, "Sarah took her last feeding well and then had a huge stool. It was really stinky." Stooling is the sign that says Sarah is processing her food and pushing it all the way through the system. She may not be getting any nutritional value from the food, but at least it knows the way from the front door to the back door.
As many of you know, there are signs that say "Your kid is going to be alright". It feels like someone just took a pallet of bricks off my chest.
Friday, September 21, 2007
Good News!!
Sarah came out of surgery like a trooper. Her vital signs were good enough to not need the vent.
She did however, look like she was in a lot of pain. She opened her eyes wide, grabbed Christina's fingers and stared at her almost as to say, "Help Me!"
The nurses responded quickly to that and increased the morphine. They also gave her a cocktail of other pain medication to fully compliment the morphine.
Sarah quickly calmed down and went into a slumber. She laid there for another 3 hours as Christina and I sat and talked and watched. She looked comfortable.
We decided, at that point, to leave for the day. Her nurse assured us that they were going to keep Sarah that way for a while until the pain subsided. They also said that the babies will only feel the main surgical pain for about 24 hours.
I just spoke with her nurse and she told me Sarah slept through the night and was doing well. I asked about the wound. Sarah's first surgery was followed by an infection and I am a little nervous about a repeat performance. The nurse indicated that the wound looked good. No swelling, no redness, etc.. I will probably be nervous about this for another day or so.
Summary: So Far, So Good.
She did however, look like she was in a lot of pain. She opened her eyes wide, grabbed Christina's fingers and stared at her almost as to say, "Help Me!"
The nurses responded quickly to that and increased the morphine. They also gave her a cocktail of other pain medication to fully compliment the morphine.
Sarah quickly calmed down and went into a slumber. She laid there for another 3 hours as Christina and I sat and talked and watched. She looked comfortable.
We decided, at that point, to leave for the day. Her nurse assured us that they were going to keep Sarah that way for a while until the pain subsided. They also said that the babies will only feel the main surgical pain for about 24 hours.
I just spoke with her nurse and she told me Sarah slept through the night and was doing well. I asked about the wound. Sarah's first surgery was followed by an infection and I am a little nervous about a repeat performance. The nurse indicated that the wound looked good. No swelling, no redness, etc.. I will probably be nervous about this for another day or so.
Summary: So Far, So Good.
Wednesday, September 19, 2007
Preparing For Surgery
Game on. Tomorrow @ 11:00 am. The prep begins today. Sarah is scheduled to have an NG tube inserted today, as well as being taken off Pregestimill and switched to Pedialite. She probably won't like that, but what are ya gonna do?
If all goes well, by 1:00pm tomorrow Sarah will be whole. This, I believe, will be followed by 7-10 days of relaxing.
I am a little anxious and nervous. We have had such good luck with the care she has gotten, that I can't stop thinking I might be too overconfident. That might not seem rational. Let's say I am cautiously optimistic.
Keep Sarah in your prayers.
If all goes well, by 1:00pm tomorrow Sarah will be whole. This, I believe, will be followed by 7-10 days of relaxing.
I am a little anxious and nervous. We have had such good luck with the care she has gotten, that I can't stop thinking I might be too overconfident. That might not seem rational. Let's say I am cautiously optimistic.
Keep Sarah in your prayers.
Monday, September 17, 2007
The Cable Guy Comes on Thursday
Today, we found out that the surgery for Sarah is scheduled for Thursday, sometime between 8am and 1pm. This is GREAT news!! Sarah is ready, and we are too. I can see this hospital stay starting to take its toll on Christina. The kids at home still haven't really gotten used to her being gone so much and she feels guilty about that. She is kinda soft when it comes to Henry's sweet cry for attention. The boys would rather have her around playing games than when I am home forcing them to fabricate clothing for Cathy Lee Gifford.
I sort of feel that this surgery is like getting cable. They can't tell me exactly when they are going in, but it will be between 8 and 1. I spose if I thow the surgeon a few bucks, I can get hooked up with a sweet movie channel.
Anyway, if you can take a minute on Thursday to think of us and say a little prayer, it would be much appreciated. Surgery is always risky. Sarah does seem to be in great condition and ready for this next phase.
I have posted the video for this years Charit-A-Bowl event which has some footage of Sarah, Luke and Will.
I got a little gratuitious this year, so sue me.
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