Last night, Chris and I checked Sam's oxygen saturation (which we do routinely with our home oxymeter we were issued). It was MUCH lower than ever, and below the 'cut off' percentage our cardiologist had given...it was between 65 and 70 percent, where it has been between 77 and 80 percent. With 75 percent being the 'cut off'/red flag percentage, we were obviously in trouble. But Sam looked fine...he wasn't any more blue, he was breathing fine, he was eating good, and he was alert. We decided to check it again in the morning.
I checked it at 10 this morning and sure enough, it was still at 65 percent. Although he was having NO other symptoms of heart failure, I called the cardiologist. He sent us to the ER.
Once there, the staff got all his vitals. Magically, his oxygen saturation was reading HIGH...80-90 percent!! That's higher than it has been since we left the NICU!!! They examined him and listened to our story about last night and this morning. They called our cardiologist and together decided that he was stable enough to be sent home for now. The cardiologist set up a follow up echocardiogram on Monday to check for changes in his heart defects that may have caused the low oxygen numbers on the home unit.
Being told to head to the ER was scary. It will be the first of likely many such scares as we head toward the heart repair surgeries. Sam is fine though, and we will see how the echocardiogram goes on Monday!
~Kathy
Tuesday, December 30, 2008
Friday, December 26, 2008
Sam's First Christmas
Sam's first Christmas was very nice. We went to 10am mass and then made a really big breakfast. We opened gifts with my family. Sam got some super cute stuffed animals and clothes, among other things. My mom made a huge dinner to end the day. Sam won't remember a dang thing, but I will certainly always remember how wonderful and unexpected it was to have our first baby home and healthy and happy on Christmas. We know we have a rocky road ahead but it was such a gift to us to have him home for his first holiday.
~Kathy
Wednesday, December 24, 2008
Much Needed Update
Well it has been two weeks since Sam came home. I didn't realize how busy we have been with him until I realized I hadn't updated the web page in a while. So here is the scoop...
We actually didn't get to bring Sam home for an extra day after they told us we would. They wanted to be sure he was eating enough without it draining too much of his energy. We brought him home on a Tuesday (Dec 9). Our families had already gone home, so it was just Chris, myself, and Relo as a welcome home party.
Since then Sam has done quite well. He weighs 7lbs 13oz now, and is eating like a champ. He really doesn't cry or fuss unless he is hungry. Sleeping at night is still an issue. He doesn't exactly sleep at night. He will sleep for an hour and a half or two hours and then want food. Last night we did have a bit of a Christmas miracle...he slept for 6 hours straight!! I'm sure it won't happen again any time soon.
His current health status is another miracle. He still has all of his heart defects, but they are currently 'stable' and not causing any immediate concern. His oxygen levels stay steady at 77-80 percent. We have been educated on warning signs of heart failure...turning blue, decreased O2 levels, trouble breathing, decreased eating, decreased weight gain. Our understanding is that these will occur gradually (over weeks/months). As they start to happen, we will start to look more seriously at setting a date for the Glenn Surgery to begin the process of re-plumbing Sam's heart. For now, everything is as good as it can be, and we are just thankful to be HOME for Christmas, and not in a hospital. We are also so thankful to NOT need tube feedings, NOT need medications, NOT need supplemental oxygen...all these things may come in the future but we could not be more happy with these first few weeks of normalness!
My family (mom, dad, sister and brother) came up for Christmas and have had a blast spoiling Sam. He has barely been out of someones arms since they got here. I will update on Sam's first Christmas tomorrow!
Before I close this, I want to give a big THANK YOU to all of our neighbors who have been supporting us! We have received many dinners, goody baskets, and gifts during our first weeks home. They were greatly appreciated (and enjoyed)! They didn't have to do it, but they did and once again we are very thankful!
~Kathy and Chris
Saturday, December 6, 2008
GREAT NEWS
Sam gets to come home tomorrow!!!
The cardiologist came by today while we were hanging out in the NICU. He said Sam's eating great with no signs of stress with feeding. He and the neonatologist agreed to take out his IV line, so no more connections to wires or lines! They said as long as we are comfortable we can take him home tomorrow with the understanding that we will be following up with the cardiologist very closely. I CAN'T WAIT UNTIL TOMORROW!!
~Kathy
Steady Improvements
I am home now. I got discharged today around noon. Sam's still hangin' in the NICU. And so far so good.
We have had some minor issues with communication delays between the cardiologist and us. The short story is that Sam's crazy heart condition is still appearing to be stable. There are signs that could point to the development of problems, but at the same time there are signs that any problems we have may be far off. Confusing, I know. The important thing to know for now is that they have pulled his arterial line out, and we have finally been able to feed him and hold him!! We had a blast tonight in the NICU...our nurse let us hold him for hours.
The current plan is to pull his venous line out (hopefully tomorrow) and then move him to the 'progressive' side of the NICU...from there we observe for a few more days and then head home with him. He will still eventually need surgery. Even when he comes home he will need constant observation for signs of heart failure. That's okay with us...we just want him home!
Oh...AND that kidney problem that they identified about a month ago has COMPLETELY RESOLVED!! Ahhh...one less thing to worry about...
As soon as he moves to the progressive NICU I'll update again! Thanks for all the prayers and positive thoughts! Keep them coming!!
~Kathy
We have had some minor issues with communication delays between the cardiologist and us. The short story is that Sam's crazy heart condition is still appearing to be stable. There are signs that could point to the development of problems, but at the same time there are signs that any problems we have may be far off. Confusing, I know. The important thing to know for now is that they have pulled his arterial line out, and we have finally been able to feed him and hold him!! We had a blast tonight in the NICU...our nurse let us hold him for hours.
The current plan is to pull his venous line out (hopefully tomorrow) and then move him to the 'progressive' side of the NICU...from there we observe for a few more days and then head home with him. He will still eventually need surgery. Even when he comes home he will need constant observation for signs of heart failure. That's okay with us...we just want him home!
Oh...AND that kidney problem that they identified about a month ago has COMPLETELY RESOLVED!! Ahhh...one less thing to worry about...
As soon as he moves to the progressive NICU I'll update again! Thanks for all the prayers and positive thoughts! Keep them coming!!
~Kathy
Wednesday, December 3, 2008
SURPRISE!! SAM'S HERE!!
SO I was at work on Tuesday. Around 3 o'clock, while dealing with a particularly grumpy old man patient of mine, I suddenly got this curious feeling...of my water breaking! I called the OB and they wanted me to leave work and rest for a few hours and call back. I still had a slow water leak around 6 and they sent us on to the hospital.
We went to 'OB Assessment' in the hospital and they confirmed my water had broke, and that I was one centimeter dilated. I had no pain or contractions until that point. They decided to admit us and go ahead and start a Pitocin drip to speed up the process, since it is important to deliver ASAP after your water breaks. That Pitocin sucks. I didn't make it too long before I needed the epidural. And thank GOD for epidurals. Pitocin started at 10 pm, epidural started around 2am, and by 8am we were fully dilated. I pushed for 25 minutes and he was here! Once again, thank GOD for epidurals. Of course, my epidural ran out of juice literally minutes before we started pushing but there was enough good stuff left to get me through it all.
Chris was a trooper...didn't pass out or throw up or anything! He got some great photos in the room. Sam weighs 7lbs, 2oz and is 21 inches long. They took him almost immediately to the NICU so the doctors could assess his heart. It took most of the day, but the outcome of this initial assessment is nothing but good news.
As of right now, Sam is doing much better than expected. His vital signs are normal and he is keeping a great O2 saturation (which is really the most important vital sign in his case). His first Echocardiogram showed that his condition is actually not quite as bad as expected...they called it a 'stable defect.' After consulting with the doctors in Atlanta, it was decided that Sam would not need to be rushed to Atlanta after all!
Even better than that, they think his defect is stable enough to warrant us being able to skip the first of the three surgeries!! They are going to keep him here for observation for about a week, and then we can take him home! We will monitor him from there, and he will go in for his first surgery (which is technically the second in the original series of three) sometime between 3 and 6 months. We are playing a wait and see game, but so far so good.
We had him baptized today in the NICU since his future is still bound to be bumpy. The pastor from our church came to the hospital, and they allowed me, Chris, the pastor, my mom and dad, and Chris's mom all in the NICU at once (they only usually allow two at a time). We did the baptism with all the nurses standing behind us watching and smiling. I feel bad that his baptism wardrobe consisted of a hospital grade knit cap, a diaper, and an assortment of tubes and wires, but it was actually very touching and reassuring to have the baptism out of the way.
Chris hasn't gotten to hold Sam yet, and I only got to hold him for a few brief seconds before they rushed him to the NICU. We are on our way to tell him goodnight in the NICU right now, and hopefully they will let us hold him a bit tonight. Keep your fingers crossed! I will update as I can!
~Kathy
We went to 'OB Assessment' in the hospital and they confirmed my water had broke, and that I was one centimeter dilated. I had no pain or contractions until that point. They decided to admit us and go ahead and start a Pitocin drip to speed up the process, since it is important to deliver ASAP after your water breaks. That Pitocin sucks. I didn't make it too long before I needed the epidural. And thank GOD for epidurals. Pitocin started at 10 pm, epidural started around 2am, and by 8am we were fully dilated. I pushed for 25 minutes and he was here! Once again, thank GOD for epidurals. Of course, my epidural ran out of juice literally minutes before we started pushing but there was enough good stuff left to get me through it all.
Chris was a trooper...didn't pass out or throw up or anything! He got some great photos in the room. Sam weighs 7lbs, 2oz and is 21 inches long. They took him almost immediately to the NICU so the doctors could assess his heart. It took most of the day, but the outcome of this initial assessment is nothing but good news.
As of right now, Sam is doing much better than expected. His vital signs are normal and he is keeping a great O2 saturation (which is really the most important vital sign in his case). His first Echocardiogram showed that his condition is actually not quite as bad as expected...they called it a 'stable defect.' After consulting with the doctors in Atlanta, it was decided that Sam would not need to be rushed to Atlanta after all!
Even better than that, they think his defect is stable enough to warrant us being able to skip the first of the three surgeries!! They are going to keep him here for observation for about a week, and then we can take him home! We will monitor him from there, and he will go in for his first surgery (which is technically the second in the original series of three) sometime between 3 and 6 months. We are playing a wait and see game, but so far so good.
We had him baptized today in the NICU since his future is still bound to be bumpy. The pastor from our church came to the hospital, and they allowed me, Chris, the pastor, my mom and dad, and Chris's mom all in the NICU at once (they only usually allow two at a time). We did the baptism with all the nurses standing behind us watching and smiling. I feel bad that his baptism wardrobe consisted of a hospital grade knit cap, a diaper, and an assortment of tubes and wires, but it was actually very touching and reassuring to have the baptism out of the way.
Chris hasn't gotten to hold Sam yet, and I only got to hold him for a few brief seconds before they rushed him to the NICU. We are on our way to tell him goodnight in the NICU right now, and hopefully they will let us hold him a bit tonight. Keep your fingers crossed! I will update as I can!
~Kathy
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