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.
Thursday, September 13, 2007
Charit-a-bowl Update
It looks like Sarah won't be able to make the Charit-a-bowl. It's just not in her cards this year. We were hoping she'd be home, but with all the set backs and obsticles she's had to overcome her surgery won't be in time.
Speaking of the Charit-a-bowl, if you're reading this, you're invited. If for some reason you didn't get the invitation, please go to charitabowl.org to get the details. If you can't make it but still want to make a donation, please write checks to "MKCFF" and mail them to 900 Woodland Drive Wheeling, IL 60090. Lastly, this isn't about bowling, it's about funding a cure for this terrible disease. Non-bowlers are invited and encouraged to come! Thank you for all you've done for our families.
Speaking of the Charit-a-bowl, if you're reading this, you're invited. If for some reason you didn't get the invitation, please go to charitabowl.org to get the details. If you can't make it but still want to make a donation, please write checks to "MKCFF" and mail them to 900 Woodland Drive Wheeling, IL 60090. Lastly, this isn't about bowling, it's about funding a cure for this terrible disease. Non-bowlers are invited and encouraged to come! Thank you for all you've done for our families.
Tuesday, September 11, 2007
Central Line Dilemma
Today the nurses told me that Sarah's blood infection has cleared from the peripheral site they've been testing (her arm) yeah!!, but still shows up in her central line. That's an IV that was placed during her first surgery. The doctors think it's best to pull it because it seems like her body is rejecting the foreign object. This would be great if she didn't need it anymore, but unfortunately she does need it to administer her antibiotics and IV nutrition. So they have to either put another one in or find another way to get her the fluids she needs. They talked about possibly having to use a PIC line until they decide if she needs a central line. The central line is able to move more fluids quicker than a PIC line, so they'd like to have one available. The nurse said they'd probably wait until Friday to make that decision. Friday seems like an eternity away!
Monday, September 10, 2007
Not so Fast, We've Hit Another Stumbling Block
Saturday as I walked in to see Sarah, Cindy, her nurse was just getting of the phone with Mike. She needed consent from one of us to do a lumbar puncture. She spiked a fever friday night after Mike left and her blood was testing positive for an infection. They wanted to test her spinal fliud to make sure it wasn't infected as well. Preliminary results have ruled out Meningitis, thank God, but they still don't know what caused the infection and they may never know. She's on antiboitics that may take 21 days to administer depending on the results of the lumbar puncture. The LP results should be back today. I haven't been able to confirm whether this puts off her last surgery, but I hope to find out soon. She will probably be in the hospital for the Charit-a-bowl. I was hoping to have her home by then. When I saw her on Sunday night she seemed to be doing better.
Friday, September 7, 2007
No Dumping
I just spoke with Megan, Sarah's nurse for the day. She indicated that Sarah is awake and happy and alert. She has taken to the new feeding schedule and is progressing nicely.
Megan also said that her 'output' is much more in line with what the doctors were expecting. So, the dumping issue has been reduced for the time being.
Maybe Sarah just needed another day to let her body rest before all organs ready for action. The doctors are happy with everything. We will restart the enzymes soon and, hopefully get back on track for the next round of surgery.
I went to a CF fundraiser last night where I met a 26 year old woman with CF. While she does have lung issues, she was upbeat and had good things to say about her treatment. I know we will find a cure.
Wednesday, September 5, 2007
I'd rather have a bottle in front of me than a frontal labotomy
Sarah has had some issues processing her grub. The doctors are not surprised, but also not happy. When a person is 'dumping', (their word, not mine), they get little or no nutritional value from the food they eat. To this point, Sarah's food has consisted of mother's milk, synthetic enzymes and other supplements.
This can be caused by many different variables. CF children need enzymes to digest food. Add this to the fact that organs shut down after surgery and bacterial concerns always play a big part in digestion and you have a cornucopia of nutritional possibilities.
Last Thursday, Sarah started on Enzymes, which she did not like. We decided to give her the powdered substance in a small shot, rather than ruin her entire meal. At the same time, the gut doctors wanted to start her on an antibacterial to beat down any bad bacteria in her stomach that might be causing issues.
I was not thrilled as I did not want to try multiple things at the same time, but until I get my medical degree renewed, I decided to leave that decision up to the paid professionals.
The antibacterial was added to milk and seemed to make it thicker. Sarah could not easily get the concoction out. The nurse tried 6 different nipples, but nothing worked. As she kept running around looking for different nipples, Sarah was getting more and more frustrated. Finally, when the nurse wasn't looking, I bit a hole in the top, and all was fine. She may have gotten too much too quick however.
By Monday, the doctors had decided that no progress was being made and looked for new ways to treat the dumping. On Tuesday at the 8:00 am feeding, they decided to take her off food for 24 hours to more accurately evaluate her situation.
Now, she won't remember this later on. But, I can't imagine going that long without food. Actually, I can't imagine skipping lunch.
So, today we will try again to slowly bring up her feedings and, hopefully, see her process her food.
This can be caused by many different variables. CF children need enzymes to digest food. Add this to the fact that organs shut down after surgery and bacterial concerns always play a big part in digestion and you have a cornucopia of nutritional possibilities.
Last Thursday, Sarah started on Enzymes, which she did not like. We decided to give her the powdered substance in a small shot, rather than ruin her entire meal. At the same time, the gut doctors wanted to start her on an antibacterial to beat down any bad bacteria in her stomach that might be causing issues.
I was not thrilled as I did not want to try multiple things at the same time, but until I get my medical degree renewed, I decided to leave that decision up to the paid professionals.
The antibacterial was added to milk and seemed to make it thicker. Sarah could not easily get the concoction out. The nurse tried 6 different nipples, but nothing worked. As she kept running around looking for different nipples, Sarah was getting more and more frustrated. Finally, when the nurse wasn't looking, I bit a hole in the top, and all was fine. She may have gotten too much too quick however.
By Monday, the doctors had decided that no progress was being made and looked for new ways to treat the dumping. On Tuesday at the 8:00 am feeding, they decided to take her off food for 24 hours to more accurately evaluate her situation.
Now, she won't remember this later on. But, I can't imagine going that long without food. Actually, I can't imagine skipping lunch.
So, today we will try again to slowly bring up her feedings and, hopefully, see her process her food.
Sunday, September 2, 2007
Enzyme Challenge
Yesterday I called the nurse to see how Sarah was doing and Amy said she was having trouble with her feeds. I asked her what she meant and she described Sarah as having boughts of gagging and gas that really seemed to make her uncomfortable while she was eating. I was shocked because she seemed to be doing so well prior to this report. Amy ordered some medicine for the gas. Since she had been doing so well until now I was pretty upset to hear all this. I don't want her to have to take any medicine that she doesn't need.
Amy seemed to think that Sarah didn't like the Pregestimil (a pre-digested formula they started giving her after they decided she was "dumping"). Will had Pregestimil when he was first born and he hated it too. It smells so bad that I understood his dislike for that formula. Sarah not liking the Pregestimil seemed like a possible reason for the extreme change in her demeanor while she was eating. We tried a few things during her next feeding and determined that it wasn't the Pregestimil after all.
They started her on the powder enzyme, Viokase earlier that day. I was pretty excited about this enzyme because I thought it would be easier to give her since they could just put it in her formula. I can't really remember how we gave Will his enzymes but I know they weren't using this powder when Will was a baby. Nell, the nurse in the next shift, thought maybe she didn't like the enzymes. So for this next feeding we split the 60mls into two bottles, one with 20ml of formula and the enzymes and the other with 40ml of plain formula. She choked and gagged when I gave her the bottle with enzymes and drank the plain formula down without a problem.
After this, we realized she liked the Pregestimil, (which I thought she'd absolutely despise), but couldn't stomach the enzymes. When I went home I immediately Googled "Viokase and taste". One website described Viokase as "so vile that my daughter wouldn't eat her food if it was sprinkled on it". Another said it is a medicine they use for animals and it's malt or meat flavored so the animals will like it. I couldn't find any websites to confirm or deny that the Viokase they use for animals is the same as for humans. But after this I thought we definately have to do something to make it better for Sarah.
Amy seemed to think that Sarah didn't like the Pregestimil (a pre-digested formula they started giving her after they decided she was "dumping"). Will had Pregestimil when he was first born and he hated it too. It smells so bad that I understood his dislike for that formula. Sarah not liking the Pregestimil seemed like a possible reason for the extreme change in her demeanor while she was eating. We tried a few things during her next feeding and determined that it wasn't the Pregestimil after all.
They started her on the powder enzyme, Viokase earlier that day. I was pretty excited about this enzyme because I thought it would be easier to give her since they could just put it in her formula. I can't really remember how we gave Will his enzymes but I know they weren't using this powder when Will was a baby. Nell, the nurse in the next shift, thought maybe she didn't like the enzymes. So for this next feeding we split the 60mls into two bottles, one with 20ml of formula and the enzymes and the other with 40ml of plain formula. She choked and gagged when I gave her the bottle with enzymes and drank the plain formula down without a problem.
After this, we realized she liked the Pregestimil, (which I thought she'd absolutely despise), but couldn't stomach the enzymes. When I went home I immediately Googled "Viokase and taste". One website described Viokase as "so vile that my daughter wouldn't eat her food if it was sprinkled on it". Another said it is a medicine they use for animals and it's malt or meat flavored so the animals will like it. I couldn't find any websites to confirm or deny that the Viokase they use for animals is the same as for humans. But after this I thought we definately have to do something to make it better for Sarah.
Wednesday, August 29, 2007
The Waiting Game
Things are running smoothly. Sarah is progressing everyday. The doctors are very happy, so I am happy. So, what has happened in the last 5 days?
Sarah is now up to 60 ccs at feeding time. That is good, but the staff thinks she is dumping most of it. This is not earth-shattering as the CF does that and the stomas are so high that there is not much runway to land on.
If she didn't need to be on the IV, she would be home with us. Sooooo, the waiting game begins. We will continue to track her progress and wait for the surgeons to say "It's go time!" for the next surgery
Sarah is now up to 60 ccs at feeding time. That is good, but the staff thinks she is dumping most of it. This is not earth-shattering as the CF does that and the stomas are so high that there is not much runway to land on.
If she didn't need to be on the IV, she would be home with us. Sooooo, the waiting game begins. We will continue to track her progress and wait for the surgeons to say "It's go time!" for the next surgery
Friday, August 24, 2007
Storm Clouds (Literally)
Yesterday, on the way to the hospital, it rained very heavily. I could not believe how the trees were being blown around. While sitting in the turn lane at River Road and Rand Road, my car was being pushed back and forth.
The forecast was for tornado like rain with the heart coming just south of where I was. I ran from the parking garage through the rain and was pretty well drenched by the time I reached the NICU.
Sarah was fine, but the little baby down the aisle was having a tough time. You get to know the other folks around you. Everyone comes at around the same time, so schedules put you together with the same people every day. His father and I talked for a while. He seemed optomistic. They had surgery today. I hope it went well. Unfortunately, I could not stay long enough to see how it went.
Sarah passed a milestone yesterday. Her lower section needed to be irrigated to ensure proper flow. This is a prerequisite for the third surgery. To date, the attempts to irrigate were greeted with mild opposition. This worried me. But, yesterday, there was a breakthrough. Now, with all sections of the intestine functioning successfully, she can move on to the next round of competition.
The hospital had a 'Code Black' which apparently means the nurses can't leave because there is no guarantee that their replacements are going to make it in to work. They also had a power outage, but unlike me, they have a backup generator.
I wish I had a generator . . . in my car, because, on the way home I got a call from my parents whose sump pump had to be bailed. I knew I kept that 15 year old kid for something.
By the time we arrived at the house, my mom and dad had filled every possible water tight container available. Joe and I ran buckets, trash cans, cups and teaspoons up the stairs, out the back door and away from the house.
The new neighbors (New to me, I haven't lived there in 20 years) have a generator and hooked us up.
Today, Sarah looked great. She was wide awake when I got there and I was able to hold her while she was active. That made the day.
The forecast was for tornado like rain with the heart coming just south of where I was. I ran from the parking garage through the rain and was pretty well drenched by the time I reached the NICU.
Sarah was fine, but the little baby down the aisle was having a tough time. You get to know the other folks around you. Everyone comes at around the same time, so schedules put you together with the same people every day. His father and I talked for a while. He seemed optomistic. They had surgery today. I hope it went well. Unfortunately, I could not stay long enough to see how it went.
Sarah passed a milestone yesterday. Her lower section needed to be irrigated to ensure proper flow. This is a prerequisite for the third surgery. To date, the attempts to irrigate were greeted with mild opposition. This worried me. But, yesterday, there was a breakthrough. Now, with all sections of the intestine functioning successfully, she can move on to the next round of competition.
The hospital had a 'Code Black' which apparently means the nurses can't leave because there is no guarantee that their replacements are going to make it in to work. They also had a power outage, but unlike me, they have a backup generator.
I wish I had a generator . . . in my car, because, on the way home I got a call from my parents whose sump pump had to be bailed. I knew I kept that 15 year old kid for something.
By the time we arrived at the house, my mom and dad had filled every possible water tight container available. Joe and I ran buckets, trash cans, cups and teaspoons up the stairs, out the back door and away from the house.
The new neighbors (New to me, I haven't lived there in 20 years) have a generator and hooked us up.
Today, Sarah looked great. She was wide awake when I got there and I was able to hold her while she was active. That made the day.
Wednesday, August 22, 2007
Continued Success
Sarah is now up to about an ounce per feeding. She is tolerating everything and all is good. A surgical resident came by today and told me that the next surgery is usually scheduled 6 weeks from the first.
That timeline puts the next surgery somewhere around September 21st.
We both continue to gain weight at an impressive pace.
That timeline puts the next surgery somewhere around September 21st.
We both continue to gain weight at an impressive pace.
Tuesday, August 21, 2007
Dog Days of Summer
Sarah is still doing great. She has been given mother's milk and seems to be tolerating it well. Today, she had 25 ccs (a little less than a shot) for lunch and dropped into a food coma. I rocked her for a while until we both fell asleep.
I awoke to find a group of residents laughing at me. Oh well, both of us are rested now.
I awoke to find a group of residents laughing at me. Oh well, both of us are rested now.
Monday, August 20, 2007
Sarah Knows Best
Well, it seems that Sarah has been driving the timeline for her recovery. Last week she decided that it was time to remove the respirator and kick the morphine habit on her own.
Yesterday, she dicided it was time to yank the NG tube out. The nurses concurred and decided not to put it back in. Everyone seems OK with that decision. Maybe we have a doctor on our hands.
The feedings have changed from pedialite to mother's milk. Sarah likes that switch as she displays the kind of consumption techniques that would make Kobayashi jealous. Unfrotunately, she only gets about 10 ccs of liquid at a time.
Each day we will increase that amount and see how her body processes the food.
I also officially met the parents of our neighbors in the NICU. They have a tiny little one. The timeline looks like we will all be there for another 8 weeks or so. I imagine by then we will all get to know each other very well. There tends to be lots of time to sit and talk in the NICU.
Yesterday, she dicided it was time to yank the NG tube out. The nurses concurred and decided not to put it back in. Everyone seems OK with that decision. Maybe we have a doctor on our hands.
The feedings have changed from pedialite to mother's milk. Sarah likes that switch as she displays the kind of consumption techniques that would make Kobayashi jealous. Unfrotunately, she only gets about 10 ccs of liquid at a time.
Each day we will increase that amount and see how her body processes the food.
I also officially met the parents of our neighbors in the NICU. They have a tiny little one. The timeline looks like we will all be there for another 8 weeks or so. I imagine by then we will all get to know each other very well. There tends to be lots of time to sit and talk in the NICU.
Friday, August 17, 2007
Two Things All Kolassas Can Do.
This morning went very well for Sarah. She sucked down all the Pedialite she was given and then produced. This should pave the way for more and different feedings.
The doctors did pull some more bile out through the NG tube, but that should be only temporary.
Things are looking good. All the doctors have been by and have given their seal of approval. We will see what the weekend brings.
The doctors did pull some more bile out through the NG tube, but that should be only temporary.
Things are looking good. All the doctors have been by and have given their seal of approval. We will see what the weekend brings.
Progress!
I have not written here much in the last 4 days. I have been busy! We have been able to hold Sarah and that has taken up some of or all of my time.
She certainly likes to be held. So, we sit and rock and she sleeps. Every hour or so, I nod off and the nurse taps me on the shoulder.
So, here is the progress report. Every day the doctors see good things and each day we remove some obstacle. Tuesday they took off the pump from the NG tube and let gravity do it's work. Wednesday, they switched her from the hot bed and put her in a regular crib.
The surgeon, Dr. Leoff, came by yesterday and said she looked good enough to start giving her some Pedialite through the mouth. We will see how that goes today. Sarah REALLY wants to eat something. The pacifier is just not cutting it.
So, Sarah is ahead of schedule. We hope to see her tolerate the Pedialite so that we can try milk (or pregestimil) that would be more substantial.
She has not lost much weight, which is good. She weighed in at 6 lbs 5 oz on Tuesday.
I am off to the hospital in a few minutes and will provide another update later.
She certainly likes to be held. So, we sit and rock and she sleeps. Every hour or so, I nod off and the nurse taps me on the shoulder.
So, here is the progress report. Every day the doctors see good things and each day we remove some obstacle. Tuesday they took off the pump from the NG tube and let gravity do it's work. Wednesday, they switched her from the hot bed and put her in a regular crib.
The surgeon, Dr. Leoff, came by yesterday and said she looked good enough to start giving her some Pedialite through the mouth. We will see how that goes today. Sarah REALLY wants to eat something. The pacifier is just not cutting it.
So, Sarah is ahead of schedule. We hope to see her tolerate the Pedialite so that we can try milk (or pregestimil) that would be more substantial.
She has not lost much weight, which is good. She weighed in at 6 lbs 5 oz on Tuesday.
I am off to the hospital in a few minutes and will provide another update later.
Monday, August 13, 2007
What a Surprising Turn of Events
Today as I walked through the doors to the NICU, the surgical resident and head nurse smiled at me and gave me a big "Good Morning!", and followed me into the room.
I looked to see where her "Breaths per minute" were at. They were twice what she was at yesterday. I then turned to look at the ventilator to see if they had increased her rate and noticed that the vent machine was GONE! The resident looked over with a big grin.
Apparently, the decision to take the vent off was Sarah's. When she gets those mittens off, she goes right for the tubes. She pulled the tubes out and by the time the staff got to her, she was breathing better on her own.
She also has not had morphine for eight hours and was sleeping soundly. Everyone here seems to be very surprised at the quick turnaround.
The next hurdle will be seeing if she can "produce". Once that happens, we will see if she can tolerate feedings.
(She just woke for a second, made a sound and went back to sleep)
Her belly looks good. If the last tube comes out, we will hold her in the not so distant future.
I looked to see where her "Breaths per minute" were at. They were twice what she was at yesterday. I then turned to look at the ventilator to see if they had increased her rate and noticed that the vent machine was GONE! The resident looked over with a big grin.
Apparently, the decision to take the vent off was Sarah's. When she gets those mittens off, she goes right for the tubes. She pulled the tubes out and by the time the staff got to her, she was breathing better on her own.
She also has not had morphine for eight hours and was sleeping soundly. Everyone here seems to be very surprised at the quick turnaround.
The next hurdle will be seeing if she can "produce". Once that happens, we will see if she can tolerate feedings.
(She just woke for a second, made a sound and went back to sleep)
Her belly looks good. If the last tube comes out, we will hold her in the not so distant future.
Sunday, August 12, 2007
Sunday, August 12th
Christina and I wake up at 7:00. We have been sitting, eating and sleeping for 4 days. I opt to go for a run as I can feel myself becoming even more gooey than normal.
The food in the hospital cafeteria is actually quite good. The portions are large and too pricey either. I might start changing my route home from work, even after Sarah gets out. This, unfortunately, is not good for a fat guy.
We head for the hospital about 8:30 AM. When we arrive, we are greeted by various people checking up on Sarah. They all say the same thing. "Boy, this doesn't seem like the same kid we saw yesterday."
She looks great. She has her color back and the belly is not nearly as bloated. Her eyes aren't puffy at all.
The McCues show up to visit. They have been fabulous to us during all of this. Brian has shown up several times and have done more than we ask. Lexi is usually our goto person for baby sitting and other general help, but this time they have really gone above and beyond. It really helps to have family around.
Everyone has remarked at Sarah's progress. They also remarked at how concerned they were yesterday. Once again, Thank God it's 2007.
Being involved with the foundation, we hear about things that are going on in the area. In April we heard about a couple that had a child with CF and might want to talk. We passed on our info, but did not hear anything. We also knew that that child was still in the NICU. We met with them today. It was nicely timed with the McCue visit and I think it was good for them to meet, not one, but two CF families.
We all talked about our experiences. I feel lucky to have Will and Sarah.
Shortly after that, our nurse commented to me that she was amazed that we had Sarah after having Will. Although that is an obvious observation, I guess I never really thought about to much. Until recently, my reference point has always been Will and Luke. They are doing so well. I know that the risk was there, but didn't really think it would strike us twice, and if it did, we could deal with another Luke or WIll.
Now, being so involved with the Foundation, and seeing such a wide range of CF kids, I realize how uncommon Luke and WIll are.
I sure hope Sarah can beat this and thrive with the disease. We will find a cure. I am certain of it.
The food in the hospital cafeteria is actually quite good. The portions are large and too pricey either. I might start changing my route home from work, even after Sarah gets out. This, unfortunately, is not good for a fat guy.
We head for the hospital about 8:30 AM. When we arrive, we are greeted by various people checking up on Sarah. They all say the same thing. "Boy, this doesn't seem like the same kid we saw yesterday."
She looks great. She has her color back and the belly is not nearly as bloated. Her eyes aren't puffy at all.
The McCues show up to visit. They have been fabulous to us during all of this. Brian has shown up several times and have done more than we ask. Lexi is usually our goto person for baby sitting and other general help, but this time they have really gone above and beyond. It really helps to have family around.
Everyone has remarked at Sarah's progress. They also remarked at how concerned they were yesterday. Once again, Thank God it's 2007.
Being involved with the foundation, we hear about things that are going on in the area. In April we heard about a couple that had a child with CF and might want to talk. We passed on our info, but did not hear anything. We also knew that that child was still in the NICU. We met with them today. It was nicely timed with the McCue visit and I think it was good for them to meet, not one, but two CF families.
We all talked about our experiences. I feel lucky to have Will and Sarah.
Shortly after that, our nurse commented to me that she was amazed that we had Sarah after having Will. Although that is an obvious observation, I guess I never really thought about to much. Until recently, my reference point has always been Will and Luke. They are doing so well. I know that the risk was there, but didn't really think it would strike us twice, and if it did, we could deal with another Luke or WIll.
Now, being so involved with the Foundation, and seeing such a wide range of CF kids, I realize how uncommon Luke and WIll are.
I sure hope Sarah can beat this and thrive with the disease. We will find a cure. I am certain of it.
Post Surgery 2007-08-11
As you can see by the photo, Sarah's belly is mighty red. She is very sedated. She looks sore and will be out for a while.
Christina and I spend some time with her and then head for home. It is about 2:30 PM, but it feels like midnight. This was a very difficult day for all parties involved.
We go home and fall asleep too. At about 10, we call for an update. Everything is stable.
Christina and I spend some time with her and then head for home. It is about 2:30 PM, but it feels like midnight. This was a very difficult day for all parties involved.
We go home and fall asleep too. At about 10, we call for an update. Everything is stable.
Surgery No. 2
My mom showed up as surgery was about to begin. Christina's dad, Fred, showed up soon after. It was good to have some family around. They did their best to try to keep our minds off the surgery.
It was a very difficult hour. Everyone there is usually calm and collected. This was not the case today. Everyone in the operating room had a large sense of urgency on their faces. I could sense this and it did not make me feel good. Surgery is hard on a person. Two surgeries in 3 days can be very stressful.
She looked so good yesterday.
People kept coming into the waiting room. The room is used for families of those in the NICU. In the NICU, only two visitors are allowed at a time, leaving families to visit in shifts. Because of this, the families of others were shifting in and out. Every time the door would open, I would anxiously watch for a familiar face.
About an hour later, Dr Leoff opened the door. She looked very relieved. She saw no perforations in the bowel and thought that the "Iffy" section looked good. She thought that there must be some bacteria in the wound and spend a good deal of time cleaning out the section. She said earlier that if the section was bad, there would be a need for a second set of stomas, but this would not be necessary. There is a chance that the bowel has a "Pin prick" sized hole and there could be some leakage. These holes can heal themselves . . . or get bigger.
The short term conclusion is that the surgery was a big success and only time will tell about the rest of the bowel.
She sent the fluid off to the lab to be cultured. If something grows, the staff will be able to identify the growth and address the issue with a more specific antibody.
Now I want to see my kid!!
It was a very difficult hour. Everyone there is usually calm and collected. This was not the case today. Everyone in the operating room had a large sense of urgency on their faces. I could sense this and it did not make me feel good. Surgery is hard on a person. Two surgeries in 3 days can be very stressful.
She looked so good yesterday.
People kept coming into the waiting room. The room is used for families of those in the NICU. In the NICU, only two visitors are allowed at a time, leaving families to visit in shifts. Because of this, the families of others were shifting in and out. Every time the door would open, I would anxiously watch for a familiar face.
About an hour later, Dr Leoff opened the door. She looked very relieved. She saw no perforations in the bowel and thought that the "Iffy" section looked good. She thought that there must be some bacteria in the wound and spend a good deal of time cleaning out the section. She said earlier that if the section was bad, there would be a need for a second set of stomas, but this would not be necessary. There is a chance that the bowel has a "Pin prick" sized hole and there could be some leakage. These holes can heal themselves . . . or get bigger.
The short term conclusion is that the surgery was a big success and only time will tell about the rest of the bowel.
She sent the fluid off to the lab to be cultured. If something grows, the staff will be able to identify the growth and address the issue with a more specific antibody.
Now I want to see my kid!!
Big Problems
I awoke Saturday morning around 8:00 AM. Christina and I began to plan our day. The kids, Joe, Henry and Will had gone to Galena with my Mother-In-Law. We were free to devote the day to seeing Sarah.
I phoned my mom to let her know how well Sarah was doing. Will's successful surgery two years earlier gave me a more confident outlook to Sarah's prognosis.
The moment I hung up the phone, it rang again. It was the NICU Fellow. She is in charge of all the children and nurses. Upon arrival, our nurse had noticed that Sarah's color was off and that she had a very red belly. She was also in pain. The surgeon was called and determined that surgery had to be performed immediately.
Christina and I raced to the hospital and consulted with the doctors. It could be a perferation in another section of the intestines leaking into the abdomen. There was a second section of bowel that looked "Iffy" that Dr Leoff decided to leave intact. It could also be an acute infection or a combination of both.
Previously, I had told various staff to let me know when to really start worrying. I am normally very optimistic regarding these issues and have had good luck with all the procedures to date (with both Will and Sarah). I tried to get a feel for how prepared Sarah was for this operation. Dr Leoff's last words to me were: "There is a chance that she won't make it.".
I guess it is time to start worrying.
I phoned my mom to let her know how well Sarah was doing. Will's successful surgery two years earlier gave me a more confident outlook to Sarah's prognosis.
The moment I hung up the phone, it rang again. It was the NICU Fellow. She is in charge of all the children and nurses. Upon arrival, our nurse had noticed that Sarah's color was off and that she had a very red belly. She was also in pain. The surgeon was called and determined that surgery had to be performed immediately.
Christina and I raced to the hospital and consulted with the doctors. It could be a perferation in another section of the intestines leaking into the abdomen. There was a second section of bowel that looked "Iffy" that Dr Leoff decided to leave intact. It could also be an acute infection or a combination of both.
Previously, I had told various staff to let me know when to really start worrying. I am normally very optimistic regarding these issues and have had good luck with all the procedures to date (with both Will and Sarah). I tried to get a feel for how prepared Sarah was for this operation. Dr Leoff's last words to me were: "There is a chance that she won't make it.".
I guess it is time to start worrying.
Good Night Sarah
As I left the hospital on Friday, Sarah was sleeping soundly and was on her way to recovery from the surgery. I was glad this day was over and was looking forward to a good night sleep.
Saturday, August 11, 2007
Update Letter to the CF Board
Mike and I finally welcomed our new daughter, Sarah, into the world. Sarah was born on Tuesday August 7, 2007 with CF. After birth she appeared to be fine and came up to the newborn nursery with me.
After not pooping in the first 24 hours like healthy newborns do, they took her into the NICU to re-evaluate her. At that time they decided to go through a series of non-surgical procedures. None of the things they tried worked. The only option was to do surgery.
On Thursday, August 9, she had her first surgery. They found extensive mucus and maconium in her bowels. They had to remove a 5 cm section of her bowels. She was a real trooper and they were very pleased to see how stable she was after surgery. Unlike the experience we had with Will our 4 1/2 year old, we were told that she'd have to stay in the hospital for the entire 6 week period between the sectioning of her bowels and the re-sectioning of them once she's had a chance to heal.
Since the cut in her bowel is so close to her stomach they predict she won't be able to tolerate her feeds. With this in mind they wouldn't send her home between surgeries since she'd have to be on an IV for eating and they won't send her home on an IV. Mike and I were relieved because that was one of the hardest part of dealing with Will's surgery.
This morning at 9:00am we got a call and they said they needed to go back in for another surgery. This was something we didn't expect. We know she'd have to have surgery to re-section her bowels, but that wasn't supposed to be for 6 weeks. We rushed to the hospital and spoke with the surgeon.
She had said that during the first surgery she tried to manipulate her bowels to massage the maconium out before having to cut them. She worked for a few hours without success, so she cut them. During that surgery Sarah's body temp went way down so they had warm her up. I think she (the surgeon) started to worry about how long Sarah had been out during the first surgery, and maybe should close her up and hope that a particular area of the bowel that looked a little questionable would heal on it's own. So they sewed her up and made sure she warmed up.
Now that things hadn't gone as well as they thought after surgery, the surgeon thought that questionable part she saw may not be doing well and she wanted to go in. She warned us that this surgery may end up being too much for her to handle and we should be prepared for her to not make it. That was unbelievably devastating but we knew it was her only option!
After two hours of surgery the fellow from the NICU came out and told us that Sarah was doing well and they didn't have to make any more cuts!! The problem was coming from fluid that had started to fill her stomach cavity. We were sooooooooooo happy.
She's not totally out of the woods yet, but she survived the surgery and that was enough for us to really believe miracles do still happen.
So..............now we wait to see how she does after this surgery. Please keep her in your prayers. We need your support.
Christina, Mike and the entire Kolassa/McCue/Sturgeon families
After not pooping in the first 24 hours like healthy newborns do, they took her into the NICU to re-evaluate her. At that time they decided to go through a series of non-surgical procedures. None of the things they tried worked. The only option was to do surgery.
On Thursday, August 9, she had her first surgery. They found extensive mucus and maconium in her bowels. They had to remove a 5 cm section of her bowels. She was a real trooper and they were very pleased to see how stable she was after surgery. Unlike the experience we had with Will our 4 1/2 year old, we were told that she'd have to stay in the hospital for the entire 6 week period between the sectioning of her bowels and the re-sectioning of them once she's had a chance to heal.
Since the cut in her bowel is so close to her stomach they predict she won't be able to tolerate her feeds. With this in mind they wouldn't send her home between surgeries since she'd have to be on an IV for eating and they won't send her home on an IV. Mike and I were relieved because that was one of the hardest part of dealing with Will's surgery.
This morning at 9:00am we got a call and they said they needed to go back in for another surgery. This was something we didn't expect. We know she'd have to have surgery to re-section her bowels, but that wasn't supposed to be for 6 weeks. We rushed to the hospital and spoke with the surgeon.
She had said that during the first surgery she tried to manipulate her bowels to massage the maconium out before having to cut them. She worked for a few hours without success, so she cut them. During that surgery Sarah's body temp went way down so they had warm her up. I think she (the surgeon) started to worry about how long Sarah had been out during the first surgery, and maybe should close her up and hope that a particular area of the bowel that looked a little questionable would heal on it's own. So they sewed her up and made sure she warmed up.
Now that things hadn't gone as well as they thought after surgery, the surgeon thought that questionable part she saw may not be doing well and she wanted to go in. She warned us that this surgery may end up being too much for her to handle and we should be prepared for her to not make it. That was unbelievably devastating but we knew it was her only option!
After two hours of surgery the fellow from the NICU came out and told us that Sarah was doing well and they didn't have to make any more cuts!! The problem was coming from fluid that had started to fill her stomach cavity. We were sooooooooooo happy.
She's not totally out of the woods yet, but she survived the surgery and that was enough for us to really believe miracles do still happen.
So..............now we wait to see how she does after this surgery. Please keep her in your prayers. We need your support.
Christina, Mike and the entire Kolassa/McCue/Sturgeon families
Friday, August 10, 2007
Day 2 in the NICU
Finally, I am caught up with today.
As a parent, you never know how much attention you should give to your baby in the NICU.
Sarah is hooked up to so many things that it is hard to know what hurts.
12 hours after surgery is still too soon to think she is not in pain. I know that I would not want visitors this early if someone just cut me up.
To make recovery even more difficult, Dr Leff's attempt to massage the bowel came with a price. When you spend that much time touching an infant's insides, you increase the trauma and recovery time for the infant. Sarah will have a couple of days to recoup before she even comes to some cognitive state.
(UH OH, Somebody is beeping. Not us.)
Any way, we have 3 other kids and know that this will be a 4-6 week ordeal. My wife and I decided today that I would come here in the morning and she would come about 4:00.
She will be here in about an hour.
Sarah is not responsive, so I kiss her brow every 20 minutes and whisper in her ear. If you touch her too much, she curls her knees up to her chest. I guess that is pain or discomfort. No more of that.
I think the point here, that we learned with Will, is that someone has to be here every day. But you can't neglect your other kids in the process. Sarah will be fine without us sleeping here. We will most likely be here for 10 hours a day, in shifts and see how that goes.
I am lucky enough to report to a guy who has similar experience.
Well, the beeping and blinking is for Sarah now. She needed to be suctioned and she does not like that. She tenses up and that makes her shut down. The nurse had to resuscitate her manually with a hand vent as the machine did not have enough pressure. She is back to good.
I am sure glad it is 2007.
As a parent, you never know how much attention you should give to your baby in the NICU.
Sarah is hooked up to so many things that it is hard to know what hurts.
12 hours after surgery is still too soon to think she is not in pain. I know that I would not want visitors this early if someone just cut me up.
To make recovery even more difficult, Dr Leff's attempt to massage the bowel came with a price. When you spend that much time touching an infant's insides, you increase the trauma and recovery time for the infant. Sarah will have a couple of days to recoup before she even comes to some cognitive state.
(UH OH, Somebody is beeping. Not us.)
Any way, we have 3 other kids and know that this will be a 4-6 week ordeal. My wife and I decided today that I would come here in the morning and she would come about 4:00.
She will be here in about an hour.
Sarah is not responsive, so I kiss her brow every 20 minutes and whisper in her ear. If you touch her too much, she curls her knees up to her chest. I guess that is pain or discomfort. No more of that.
I think the point here, that we learned with Will, is that someone has to be here every day. But you can't neglect your other kids in the process. Sarah will be fine without us sleeping here. We will most likely be here for 10 hours a day, in shifts and see how that goes.
I am lucky enough to report to a guy who has similar experience.
Well, the beeping and blinking is for Sarah now. She needed to be suctioned and she does not like that. She tenses up and that makes her shut down. The nurse had to resuscitate her manually with a hand vent as the machine did not have enough pressure. She is back to good.
I am sure glad it is 2007.
Post Surgery
Sarah was brought back to the NICU where, Jessica, Sarah's nurse was helpful in getting us situated.
We could stay as long as we wanted, just not during staff changes. They don't like to have people in the room when they are reviewing all the cases and talking about patients that might be confidential.
We did stay through the shift change as there weren't many babies in our NICU room and there wasn't much to update.
The NICU, at our hospital, is a series of dorm type rooms. Each of the room has eight beds. Each nurse has one or two babies to look after. There are dozens of machines that do all kinds of monitoring. The babies need frequent attention and the nurses really work hard. They have to perform procedures such as changing medications, cleaning and changing dressings and constantly replacing adhesive contacts that send all kinds of info to the monitors. They seem to have to change dressings much more frequently than in the PICU or regular hospital.
The darn connectors keep falling off the kids and the monitors go crazy.
You almost get used to machines beeping and blinking. When Will was in the hospital, I would freak out if the machine started beeping. Sometimes I think he would pull the leads off on purpose, just to mess with me. He was smart little 4 week old!!
Although I cannot hold Sarah right now, I know she is in the right place. Thank GOD it is 2007. 30 years ago, this might have turned out differently. I have faith in the doctors and our nurse.
We could stay as long as we wanted, just not during staff changes. They don't like to have people in the room when they are reviewing all the cases and talking about patients that might be confidential.
We did stay through the shift change as there weren't many babies in our NICU room and there wasn't much to update.
The NICU, at our hospital, is a series of dorm type rooms. Each of the room has eight beds. Each nurse has one or two babies to look after. There are dozens of machines that do all kinds of monitoring. The babies need frequent attention and the nurses really work hard. They have to perform procedures such as changing medications, cleaning and changing dressings and constantly replacing adhesive contacts that send all kinds of info to the monitors. They seem to have to change dressings much more frequently than in the PICU or regular hospital.
The darn connectors keep falling off the kids and the monitors go crazy.
You almost get used to machines beeping and blinking. When Will was in the hospital, I would freak out if the machine started beeping. Sometimes I think he would pull the leads off on purpose, just to mess with me. He was smart little 4 week old!!
Although I cannot hold Sarah right now, I know she is in the right place. Thank GOD it is 2007. 30 years ago, this might have turned out differently. I have faith in the doctors and our nurse.
The Surgery
Sarah did not respond to any of the normal baby digestive processes. Christina fed her only to be spat upon.
After 24 hours of not producing any stool, the doctors ran some tests and tried some gentle enema type treatments.
This yielded no results. The doctors were consulted, X-Rays taken and the decision to go to surgery was made.
Dr Leff, who had done Will's surgery was going to be the surgeon. She gave us an all-to-familiar diagnosis and plan regarding the surgery. She would try to massage the bowels instead of cut them, but that was not a guarantee.
She said the surgery should last 1.5 to 2 hours. She took Sarah and disappeared down a long corridor. Christina and I left the NICU through the opposite doors. Christina and I did not talk about the surgery very much. This doctor was responsible for the very successful surgery on Will and I think at this point we realized that neither of us had a valid medical degree and could not be of much good unless the Internet connection went out or they needed to reboot a file server.
We went to lunch at the cafeteria. Margaret, a friend of ours, came to lunch and helped us keep our minds off the 600 lb gorilla. Later we went back to the hospital room to await the outcome. Both Christina and I had our eyes on the clock, trying not to get to anxious as the second hour approached.
I don't know much about surgery, but my experience has been that quick is good. I did not want to alarm my wife, and as I found out later she had the same thoughts, that the clock was getting towards 3 hours.
Finally, the phone call. Christina answered and spoke with Dr Leff. She put her fingers up to her mouth, which usually is my wife's first sign of concern.
Her second, more elevated sign of concern is a flat hand to the cheek coupled with an opening of the mouth. Luckily there was no second level.
The good news was that the surgery was successful. The bad news was that after 2 hours of massaging, Sarah's body would not cooperate. The intestines needed to be cut and, like Will, would require stomas and a second procedure.
Be happy with what ya got, because you don't know what ya coulda got.
After 24 hours of not producing any stool, the doctors ran some tests and tried some gentle enema type treatments.
This yielded no results. The doctors were consulted, X-Rays taken and the decision to go to surgery was made.
Dr Leff, who had done Will's surgery was going to be the surgeon. She gave us an all-to-familiar diagnosis and plan regarding the surgery. She would try to massage the bowels instead of cut them, but that was not a guarantee.
She said the surgery should last 1.5 to 2 hours. She took Sarah and disappeared down a long corridor. Christina and I left the NICU through the opposite doors. Christina and I did not talk about the surgery very much. This doctor was responsible for the very successful surgery on Will and I think at this point we realized that neither of us had a valid medical degree and could not be of much good unless the Internet connection went out or they needed to reboot a file server.
We went to lunch at the cafeteria. Margaret, a friend of ours, came to lunch and helped us keep our minds off the 600 lb gorilla. Later we went back to the hospital room to await the outcome. Both Christina and I had our eyes on the clock, trying not to get to anxious as the second hour approached.
I don't know much about surgery, but my experience has been that quick is good. I did not want to alarm my wife, and as I found out later she had the same thoughts, that the clock was getting towards 3 hours.
Finally, the phone call. Christina answered and spoke with Dr Leff. She put her fingers up to her mouth, which usually is my wife's first sign of concern.
Her second, more elevated sign of concern is a flat hand to the cheek coupled with an opening of the mouth. Luckily there was no second level.
The good news was that the surgery was successful. The bad news was that after 2 hours of massaging, Sarah's body would not cooperate. The intestines needed to be cut and, like Will, would require stomas and a second procedure.
Be happy with what ya got, because you don't know what ya coulda got.
The Birth
Christina and I had known for weeks that the day would be August 7th. An amnio led us to know that Sarah would have CF and early ultrasounds showed proof of intestinal blockage.
If you want Blood, You Got IT
At the urging of Christina, our "At Risk" physician agreed that taking Sarah 3 weeks early would be beneficial in possibly avoiding surgery. Managing the blockage is far easier earlier in the process.
We knew there would be some blockage, but we were hopeful. Surgery is hard on the little guys (and mom and dad too).
There are many details, that I am sure my wife will fill in regarding the who was there, who said what and all that stuff. Basically, we got to the hospital on Monday, August 6th where they prepped Christina for induction. The actual induction was scheduled for 6:00 AM on Tuesday.
I arrived at the hospital about 6:15 on Tuesday expecting to see people scurrying about, taking measurements and whatnot. What I found was that 6:00 was when they were going to start thinking about what the day was going to bring.
The prepping my wife had undergone involved getting her body 'ready' to be induced. That meant chemically tricking her body into pushing Sarah into position to greet the world. Sarah was not ready until 4 in the afternoon. I should have stayed in bed longer!
At about 4, Christina was given petocin to crank up the process. Then, Sarah was born.
5:33 PM CST - 7.2 lbs - 18.5 inches long
Sounds easy. It was for me. Anyway, Sarah looked GREAT. No distension in the stomach!! Maybe no surgery. Of course, there was that weird feeling knowing that the ultrasound did reveal some cloudy matter. Oh Well, hope for the best.
The NICU doctor was there to greet us. He was in attendance as the NICU is always notified because if there is need for surgery, she will be prepped in the NICU. Then, a real "Ron Santo" "Uh Boy" moment. The NICU doctor told me not to worry because only 10-15% of CF babies have a blockage.
I am usually a very optimistic person. But with Will, every time someone told me not to worry because of a small chance of something happening, IT HAPPENED!!
In my head, I was like "Don't say that!" Of course, I already knew about the cloudiness, so I was pretty sure it would be more than routine.
They let me cut the cord, which of course was a mistake. I have hoofs instead of hands. When I cut the cord blood went EVERYWHERE. It was like the AC/DC song
Blood on the ceiling / Blood on the Doc / Blood on the Father / Every Last Drop
If you want Blood, You Got IT
But I digress.
Sarah is beautiful. Dark hair, cute nose.
Introduction
Hello,
My name is Mike. I am the parent of 2 children with Cystic Fibrosis. My first CF child, Will, was born in 2002. Will's birth was a difficult process. My wife and I found out that CF was a possibility early in the pregnancy and were hoping for the best.
When Will was born, he had a blockage in his intestines that required immediate surgery. He was in the NICU (Neonatal Intensive Care Unit) for 2 weeks. He came home with 2 stomas, the ends of each half of his small intestine coming to the surface of his abdomen. 4 weeks later, he went back to the PICU (Pediatric Intensive Care Unit) and had surgery to put his intestines back together.
Caring for his stomas was a unnerving task. The lower portion had to be irrigated. This process was to push fluid through the intestine to flush his system. I had a hard time with this because I never was comfortable knowing how hard I could push the syringe to irrigate the intestine without damaging it in the process. Looking back, I probably wasn't pushing nearly as hard as I should have been.
Will came through both surgeries fine and now (At four years old) is dealing well with CF. He is a beautiful little boy with an infectious smile.
While he has been hospitalized twice for blockage related problems, he is as healthy as we could hope.
3 Days ago, my daughter, Sarah, was born with very similar results.
I have never been a person to keep a diary or document anything for that matter, but I thought it might be a good idea to keep this blog. Memories of what Will went through come back, but I have no reference point other than my suspect recollections.
It is also much easier as the Hospital has WiFi access in the NICU which gives me something to do while Sarah sleeps the day away.
(She just opened her eyes. This is the first time since surgery that that has happened)
I hope that this Blog will, in the future, give me a place to reflect on all the events that surrounded Sarah's earliest days and maybe give other parents in the world a place to go to understand that you are not alone.
My name is Mike. I am the parent of 2 children with Cystic Fibrosis. My first CF child, Will, was born in 2002. Will's birth was a difficult process. My wife and I found out that CF was a possibility early in the pregnancy and were hoping for the best.
When Will was born, he had a blockage in his intestines that required immediate surgery. He was in the NICU (Neonatal Intensive Care Unit) for 2 weeks. He came home with 2 stomas, the ends of each half of his small intestine coming to the surface of his abdomen. 4 weeks later, he went back to the PICU (Pediatric Intensive Care Unit) and had surgery to put his intestines back together.
Caring for his stomas was a unnerving task. The lower portion had to be irrigated. This process was to push fluid through the intestine to flush his system. I had a hard time with this because I never was comfortable knowing how hard I could push the syringe to irrigate the intestine without damaging it in the process. Looking back, I probably wasn't pushing nearly as hard as I should have been.
Will came through both surgeries fine and now (At four years old) is dealing well with CF. He is a beautiful little boy with an infectious smile.
While he has been hospitalized twice for blockage related problems, he is as healthy as we could hope.
3 Days ago, my daughter, Sarah, was born with very similar results.
I have never been a person to keep a diary or document anything for that matter, but I thought it might be a good idea to keep this blog. Memories of what Will went through come back, but I have no reference point other than my suspect recollections.
It is also much easier as the Hospital has WiFi access in the NICU which gives me something to do while Sarah sleeps the day away.
(She just opened her eyes. This is the first time since surgery that that has happened)
I hope that this Blog will, in the future, give me a place to reflect on all the events that surrounded Sarah's earliest days and maybe give other parents in the world a place to go to understand that you are not alone.
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