Wednesday, November 30, 2011
Home Sweet Home!
We finally made it home this morning! It was another uneventful flight in that Sam slept the whole time-so nice. We ended up spending yesterday in the Aurora area. Sam had to have a final chest xray and evaluation by the surgeon at 1 in the afternoon, so we couldn't really go to the zoo. Bummer! The surgeon said her xray looks excellent and she only needs lasix once a day until we see our cardiologist, Dr. Wiggins, here early next week, and then we can be done. He was very pleased with how she looked and how well she has done. He also said she doesn't really need the oxygen, but will let Dr. Wiggins make the final decision to discontinue. We should not need to go back down there again-all the rest of the follow up can be done with Dr. Wiggins here. Although she is doing very well, she is having some issues. We suspect its gas-but the last three evenings, she just cries almost unconsolably and her tummy rumbles. The oxygen in her nose may be contributing not to mention her gut is probably a bit off following anesthesia. None the less, it's no fun at all to see her in that state. So please pray for her-that she would no longer have these pains. Now we just have to get back to life an normal! I have two weeks off so that will help get through the first stage. Really her only restriction is that she can't be lifted up under her arms for 6-8 weeks. This is a hard one to remember and a long time to do that! Otherwise though, she can do all her normal baby activities-even tummy time. Overall looking back at this whole ordeal, we are blown away. By people's generosity/support and Gods goodness to us! I will likely post one more time once Sam is done with all her meds and oxygen, but we are pretty much wrapped up! God is good and takes care of His children!
Monday, November 28, 2011
And we're outta here!
Yep, it's true. We are out of the hospital! Yay! Sorry, I forgot to post yesterday. The gist of it was that she decided to make up for lost time in the eating department. All the nurses and doctors couldn't believe how much she was eating. That's my girl! Otherwise it was just waiting until today for discharge. They were in getting a final echo on Sam first thing this morning and her pressures are within the normal range even when she is off the oxygen. Thankyou Lord! So you would think this means she doesn't need the oxygen, but the cardiologist still insists she stays on it for a couple weeks. I guess that is bearable. She is also still on a diuretic, but only because they have to wean it slowly for post op fluid accumulation. Her xrays continue to show improvement. So she is on lasix twice a day, tylenol as needed for pain and oxygen. Considering she had open heart surgery to repair a significant defect only 5 days ago, we certainly can't complain. What an adventure for our family!
We got to skype with both our kids-at least for the few minutes of attention span they had, and with our friends at couple's group! How amazing technology is to keep us so connected with the ones we love, even when two states away. It really is awesome to see God working not only in our life, but also in the lives of the people close to us. I guess Charlee was telling boys at school about Jesus and when they didn't believe her she said she knew the truth. That is a child-like faith! We can only pray she continues to hold onto that as she grows up, not to mention share it with others! I am so looking forward to seeing my kiddos-I miss them a lot. We are hoping to skype with them again tonight.
For now we are just hanging out at the hotel. Its nice to be in a room that doesn't have a glass door and constant people in and out! Sam is tolerating the oxygen pretty well-I have found the canula on top of her nose a few times :) stinker! We basically will keep her on oxygen right up until we board the plane. We will hand off the tank to them, board and then when we get back to billings, we will go get another tank. At least we don't have to deal with it on the plane! Sam has to go back for a quick evaluation tomorrow-just to make sure her incision looks ok, and then that should be our last time a the Childrens Hospital. We are very much looking forward to coming home Wednesday. Thanks again to all of you who have been so diligently praying for us during this ordeal. This will most likely be the post until we get home.
We got to skype with both our kids-at least for the few minutes of attention span they had, and with our friends at couple's group! How amazing technology is to keep us so connected with the ones we love, even when two states away. It really is awesome to see God working not only in our life, but also in the lives of the people close to us. I guess Charlee was telling boys at school about Jesus and when they didn't believe her she said she knew the truth. That is a child-like faith! We can only pray she continues to hold onto that as she grows up, not to mention share it with others! I am so looking forward to seeing my kiddos-I miss them a lot. We are hoping to skype with them again tonight.
For now we are just hanging out at the hotel. Its nice to be in a room that doesn't have a glass door and constant people in and out! Sam is tolerating the oxygen pretty well-I have found the canula on top of her nose a few times :) stinker! We basically will keep her on oxygen right up until we board the plane. We will hand off the tank to them, board and then when we get back to billings, we will go get another tank. At least we don't have to deal with it on the plane! Sam has to go back for a quick evaluation tomorrow-just to make sure her incision looks ok, and then that should be our last time a the Childrens Hospital. We are very much looking forward to coming home Wednesday. Thanks again to all of you who have been so diligently praying for us during this ordeal. This will most likely be the post until we get home.
Playing with her ball
Checking out her new mini pillow pet from Blake and Jackie
Smile!
Watching Charlee and Tyler and skype!
Sleepy baby!
Nurse Esther
Check out my cool incision!
Sleeping through the discharge process!
Playing in her new favorite position-feet in the air-at the hotel!
Saturday, November 26, 2011
Only a couple more days!
Yet another day of good recovery! We have gotten all kinds of smiles from Miss Sam today. Which of course is wonderful. Her chest xray looked a lot better today-the fluid is clearing up, so that's great. They said they were thinking about dishcharging us Sunday, but Sams eating is not quite up to where it needs to be, so they expect Monday. We looked at moving up our fligh from Wed to Mon pm, but there are absolutely no more seats on any flights until our scheduled one wednesday am. So we will just stay at the hotel across the street from the hospital for a couple days. We are thinking we may take a trip to the zoo on Tuesday since the weather is so nice around here. It all depends on how Sam is doing.
So we are just hanging out waiting for them to release us. They are weaning her off the last diuretic, so tomorrow we will just be left with gas meds and tylenol-I think. We are looking forward to getting home, but are ok that we have to wait a few more days. We really miss Charlee and Tyler! There are all kinds of kids around here and they make me think of my little kidlets! At least we can do Skype when they are with grandma Kathy so that's been helpful. I guess Tyler has been asking where his Samantha is. He's always looking out for her. And Charlee made a cute card with a picture of Sam with all kinds of tubes coming out. I love it! We let them see her over the Skype camera when she still had a lot of that stuff in. They love their baby sister.
Enjoy today's pics!
So we are just hanging out waiting for them to release us. They are weaning her off the last diuretic, so tomorrow we will just be left with gas meds and tylenol-I think. We are looking forward to getting home, but are ok that we have to wait a few more days. We really miss Charlee and Tyler! There are all kinds of kids around here and they make me think of my little kidlets! At least we can do Skype when they are with grandma Kathy so that's been helpful. I guess Tyler has been asking where his Samantha is. He's always looking out for her. And Charlee made a cute card with a picture of Sam with all kinds of tubes coming out. I love it! We let them see her over the Skype camera when she still had a lot of that stuff in. They love their baby sister.
Enjoy today's pics!
Happy girl!
Reading with Daddy!
Out cold on Daddy's chest-note the drool stains on his shirt! :)
Friday, November 25, 2011
Out of ICU
Today has been yet another day of improvement! Yesterday after my post, they were getting a little worried about her lack of urine production. They had her on three diuretics and added a fourth. Her poor little face really showed the extra fluid in her system-swollen eyelids and cheeks. Thankfully late evening she pretty much saturated her diaper and did that a couple more times through the night. I should hope so on 4 different diuretics! She did start having some painful gas last night and wasn't eating much. She had some good blow outs and this morning seemed better. We also got her on good ol' Mylecon. Her last dose of narcotic pain meds was first thing this morning and since then she's been comfortable on just Tylenol-amazing! Her bloodwork continues to look good, and she is down to only 0.25 L/hr of oxygen-which is not much. They pulled her central line this morning and put in a smaller hand IV catheter. The surgeon came in and said he wanted to keep her on a couple of the diuretics a bit longer since she still has some fluid in her chest. But other than that, he's happy with how she is doing. The dressing over her incision got to come off and things look good under there.
So before noon, she was doing well enough to leave ICU, but we had to wait for a room to open up. It was 4 before we moved rooms, but that is ok. It's a little funny because even though we are officially upgraded from ICU into a less intensive class, we are still in the ICU area. They actually shut down the cardiology pediatric care unit during the holiday since there were no patients up there. So we didn't move too far-just down the hall to a private room which is nice. Or as private as a room with a glass door can be :) At least we have a DVD player in this room so we can watch movies other than all the kids ones available in their system!
Overall we are so blessed by both Sam's progress and her care. The nurses and doctors are so wonderful. It also was a great day because I got to cuddle her without all the annoying tubes that were attached to her central line. She got to take a nap on my chest and the world was good again! As of now they are saying we may be discharged as early as Sunday, but may be Monday am. They just want to make sure her chest fluid is getting better. Its still not known if she will need the oxygen to go home on, but for now she's tolerating the weaning down process very well. I'm optimistic that she will be oxygen free! As you can see by the one picture, she has already figured out how to rub it out of her nose...little stinker! I hope you guys enjoy the pics to follow!
So before noon, she was doing well enough to leave ICU, but we had to wait for a room to open up. It was 4 before we moved rooms, but that is ok. It's a little funny because even though we are officially upgraded from ICU into a less intensive class, we are still in the ICU area. They actually shut down the cardiology pediatric care unit during the holiday since there were no patients up there. So we didn't move too far-just down the hall to a private room which is nice. Or as private as a room with a glass door can be :) At least we have a DVD player in this room so we can watch movies other than all the kids ones available in their system!
Overall we are so blessed by both Sam's progress and her care. The nurses and doctors are so wonderful. It also was a great day because I got to cuddle her without all the annoying tubes that were attached to her central line. She got to take a nap on my chest and the world was good again! As of now they are saying we may be discharged as early as Sunday, but may be Monday am. They just want to make sure her chest fluid is getting better. Its still not known if she will need the oxygen to go home on, but for now she's tolerating the weaning down process very well. I'm optimistic that she will be oxygen free! As you can see by the one picture, she has already figured out how to rub it out of her nose...little stinker! I hope you guys enjoy the pics to follow!
Finally in clothes again!
Naughty girl rubbing out her tubes!
Chilling out with her favorite toy-she was grabbing at it today!
She enjoyed story time with mommy today!
Thursday, November 24, 2011
Happy Thanksgiving!
We had a busy night with Sam! Mostly all good-she got to lose her breathing tubes, stomach tube, one of her central lines, and her urinary catheter. She did take her time to wake up enough for the breathing tube to come out, but once she was ready, we couldn't get it out fast enough. Once that was out she started acting pretty painful, so they gave some Tylenol and a half dose of Morphine. It didn't take long for her to relax and go to sleep in her sea of morphine, which was good since Mommy did not like to her her whimper in pain! Her vital signs and blood work all remained stable so she did not need any additional treatment other than more Tylenol through this morning. She got to have some Pedialyte around 1am and then milk at 6:30am, which she was more than happy to eat. At 1, just before eating, they moved her into a bigger bed and she gets a fun fuzzy fleece blanket that she can take home. Dana spent the night in our sleeping room and got a good nights sleep. I stayed in with Sam and got a little sleep. At least with her doing well, I am ok to take a big nap at some point today!
I woke up about 6, fed Sam her bottle and then had to leave the ICU while they do their shift change. So I went and got Dana up, showered and ate some breakfast. Very shortly after we got back to the ICU, Dr. Jaggers (the surgeon) came in to check on her. He was happy with how she was doing. Or at least for a man who shows little expression, I think he was pleased! He pulled out her heart wire and chest tube. Since those tend to hurt, he had them give more Morphine before he did it. So Sam is back in her sea and sleeping nicely now. Apparently Sam had also managed to kick out her small IV catheter from her foot while we were gone! She is so ornery sometimes! The nurses then removed her arterial line, leaving only one (her jugular central line) out of the original 10 tubes/wires/IV lines. They have to replace her small IV line, which Sam is so not a fan of. She will keep her central line in until early tomorrow morning. She has some fluid in the chest that requires a diuretic to get rid of-it is an expected amount of fluid following surgery. The diuretic causes her to lose Potassium and the best way to replace the Potassium is via the central line. So as long as her lungs clear up and she doesn't lose too much Potassium, the central line will be gone soon. It is absolutely amazing how fast they are moving along and how well she is doing! They had originally told us she would be in the ICU until Saturday at least. Now, as long as nothing changes, she will be out of ICU first thing tomorrow morning-less than 48 hours from being out of surgery!
So we wait eagerly to see how she continues to amaze them and us. I have tried to express to as many people as I can here that we truly believe that she is doing so well because of all the prayers. God is a God who answers the requests of his people! On this day of thanksgiving, we find ourselves overwhelmed with gratitude-for the love of our Lord, for our family and friends, and for the gift that is little Samantha! We pray you are able to reflect upon every aspect of your life with thanks to the Lord-the good things and the hard things. He is good, all the time! And His love never fails. We love you!
Before Morphine...
After Morphine...
I woke up about 6, fed Sam her bottle and then had to leave the ICU while they do their shift change. So I went and got Dana up, showered and ate some breakfast. Very shortly after we got back to the ICU, Dr. Jaggers (the surgeon) came in to check on her. He was happy with how she was doing. Or at least for a man who shows little expression, I think he was pleased! He pulled out her heart wire and chest tube. Since those tend to hurt, he had them give more Morphine before he did it. So Sam is back in her sea and sleeping nicely now. Apparently Sam had also managed to kick out her small IV catheter from her foot while we were gone! She is so ornery sometimes! The nurses then removed her arterial line, leaving only one (her jugular central line) out of the original 10 tubes/wires/IV lines. They have to replace her small IV line, which Sam is so not a fan of. She will keep her central line in until early tomorrow morning. She has some fluid in the chest that requires a diuretic to get rid of-it is an expected amount of fluid following surgery. The diuretic causes her to lose Potassium and the best way to replace the Potassium is via the central line. So as long as her lungs clear up and she doesn't lose too much Potassium, the central line will be gone soon. It is absolutely amazing how fast they are moving along and how well she is doing! They had originally told us she would be in the ICU until Saturday at least. Now, as long as nothing changes, she will be out of ICU first thing tomorrow morning-less than 48 hours from being out of surgery!
So we wait eagerly to see how she continues to amaze them and us. I have tried to express to as many people as I can here that we truly believe that she is doing so well because of all the prayers. God is a God who answers the requests of his people! On this day of thanksgiving, we find ourselves overwhelmed with gratitude-for the love of our Lord, for our family and friends, and for the gift that is little Samantha! We pray you are able to reflect upon every aspect of your life with thanks to the Lord-the good things and the hard things. He is good, all the time! And His love never fails. We love you!
Before Morphine...
After Morphine...
Wednesday, November 23, 2011
We made it!
Whew! The giant hurdle of surgery is behind us! We got up nice and early and got Sam checked in this morning. We prayed for our little baby girl and left the hotel at 5:30. We sat in the pre-surgery room with her for an hour and a half while we waited for them to get things ready. Daddy was getting all kinds of smiles from her with his stories as you can see in the pics. About 7:20 we kissed her cheeks and said goodbye so they could start her anesthesia. That was a hard goodbye but we managed.
Overall she was away from our sites for about 5 hours. The surgery took about 3 1/2 and the rest was prepartion and recovery. Since she had open heart surgery, they had to put her on the bypass machine. Basically they cool her heart down and redirect blood flow through the machine rather than going through the heart. And in that her heart is no longer beating-scary! The nurse came out a couple times to update us while we waited so that kept us at ease. Then the surgeon came out when he had her closed up. He let us know that her ventricular defect was acutally an AV canal defect which is worse. Basically where the four chambers come together, there was a giant hole. The atrial defect was small enough to put a couple stitches in. They had to put a patch over the large hole-it is made out of gortex. Yesterday he had explained that her high pulmonary pressures would need further treatment during surgery. HOWEVER....as soon as the defect was repaired, her pressures dropped by half and they didn't have to give her any of the other blood pressure therapies. Praise the Lord for that answered prayer. The fact that the defect was larger that originally anticipated thankfully doesn't change the outcome for an excellent long term prognosis. She sailed through the whole procedure exceptionally well and better than they expected. Again to God be the glory!
Right now we are in ICU with her. I could hardly wait to see her even though I knew it would be hard to see her like that. Once again I was so thrilled with how she looked. She has great color and even though she has lots of tubes and wires, she looks so much better than what I was expecting. She still has not fully woken up but is in the process. Originally they said she would have to keep the breathing tube in until tomorrow, but she is doing so well and breathing against the ventilator they will most likely pull it tonight! She has her mom's strong will which in this situation is a huge blessing! Now the next smaller hurdle is the next 24 hours. Once we get past that, the chance of set backs is very small. So now we are just thanking God for how well she is doing and asking for that to continue. We both have so much peace about everything. Thankyou Jesus for watching over us from the tiny details to the big picture.
Overall she was away from our sites for about 5 hours. The surgery took about 3 1/2 and the rest was prepartion and recovery. Since she had open heart surgery, they had to put her on the bypass machine. Basically they cool her heart down and redirect blood flow through the machine rather than going through the heart. And in that her heart is no longer beating-scary! The nurse came out a couple times to update us while we waited so that kept us at ease. Then the surgeon came out when he had her closed up. He let us know that her ventricular defect was acutally an AV canal defect which is worse. Basically where the four chambers come together, there was a giant hole. The atrial defect was small enough to put a couple stitches in. They had to put a patch over the large hole-it is made out of gortex. Yesterday he had explained that her high pulmonary pressures would need further treatment during surgery. HOWEVER....as soon as the defect was repaired, her pressures dropped by half and they didn't have to give her any of the other blood pressure therapies. Praise the Lord for that answered prayer. The fact that the defect was larger that originally anticipated thankfully doesn't change the outcome for an excellent long term prognosis. She sailed through the whole procedure exceptionally well and better than they expected. Again to God be the glory!
Right now we are in ICU with her. I could hardly wait to see her even though I knew it would be hard to see her like that. Once again I was so thrilled with how she looked. She has great color and even though she has lots of tubes and wires, she looks so much better than what I was expecting. She still has not fully woken up but is in the process. Originally they said she would have to keep the breathing tube in until tomorrow, but she is doing so well and breathing against the ventilator they will most likely pull it tonight! She has her mom's strong will which in this situation is a huge blessing! Now the next smaller hurdle is the next 24 hours. Once we get past that, the chance of set backs is very small. So now we are just thanking God for how well she is doing and asking for that to continue. We both have so much peace about everything. Thankyou Jesus for watching over us from the tiny details to the big picture.
Tuesday, November 22, 2011
Part 2 of Prep Day
Our last visit at the hospital today was with the surgeon, Dr. Jaggers. He's a very nice man. He let us know that her ASD will just need a couple sutures, but the VSD is large and will need a patch. Both are very routine and should go well. He went over all the stuff we can expect and again all those risks. However he put some numbers to it and all the risks are less than 1% chance. I do better with the facts-it actually put my mind at ease. Her risk of not making it through the surgery or post op is about 3%-but again that does not scare me since I'm at complete peace that she won't be leaving us anytime soon.
Sam did well with her sedation and woke up nice and hungry. She ate a ton! Dr. Jaggers says Sam's biggest hurdle will be her high blood pressure in the lungs. What we are praying for is that once the defects are closed (primarily the one between the ventricles), the pressures will respond quickly and that will be the end of it. Otherwise she may need to be on meds for a while and worst case scenario forever (this is very unlikely). He says she will be coming home on oxygen for sure. I say we pray against that and she does so well that it's not needed!
That should be all for today! We are back at the hotel just hanging out. Sam is sleeping and we are watching a movie. Should be a pretty mellow rest of the day-getting rested up for tomorrow. We have to be at the hospital at 6am for 7:30 surgery, so morning will come early. Especially since I have to feed her at 3:30am as her last feeeding before hand. I will plan on posting again once Sam's out of surgery.
Sam did well with her sedation and woke up nice and hungry. She ate a ton! Dr. Jaggers says Sam's biggest hurdle will be her high blood pressure in the lungs. What we are praying for is that once the defects are closed (primarily the one between the ventricles), the pressures will respond quickly and that will be the end of it. Otherwise she may need to be on meds for a while and worst case scenario forever (this is very unlikely). He says she will be coming home on oxygen for sure. I say we pray against that and she does so well that it's not needed!
That should be all for today! We are back at the hotel just hanging out. Sam is sleeping and we are watching a movie. Should be a pretty mellow rest of the day-getting rested up for tomorrow. We have to be at the hospital at 6am for 7:30 surgery, so morning will come early. Especially since I have to feed her at 3:30am as her last feeeding before hand. I will plan on posting again once Sam's out of surgery.
Day of Preparation
Well we made it to Denver without complication! The flight was smooth and Sam slept the whole time. Dana's brother Blake picked us up and we spent the day with him. It was fun to cruise around with someone we knew and get to see his and Jackie's apartment. We all went to dinner last night and just had a nice time visiting-much better than sitting around in our hotel room.
Today started very early-4 am to be exact. I had to feed Sam about 2 hrs earlier than normal because she is having a sedated echocardiogram today and had to be off milk for 4 hrs. We got to the hospital this morning, did some paperwork, and met with the welcome coordinator Ashley. From there they did a chest xray and took her into the surgery prep area for her sedated echo. We met with the anesthesiologist which was probably the hardest part so far. We of course know the risks, but it's still hard to hear them. He said the risks of the anesthesia during heart surgery itself include voice problems, cognitive dysfunction (either temporary or permanent) and of course a bad reaction resulting in death. So for all of you out there praying, there are some specific things to pray against. We firmly believe she is not going to die as God has shown us glimpses of what her future holds. But that good old fear wants to creep in about the other stuff, so keep us lifted in prayer. We know God is in control-it's that human part of us that has a hard time hearing all the "possibilities". Right now I'm in the waiting room while they do the echo. They just masked her down with gas today and are going to get her blood while she is sleeping. Once they are done-in about 10 min from now, we will go on a tour with the head nurse and then meet with the surgeon. Funny thing-the nurse, Ester, was my nurse when I had my heart surgery 21 years ago. I remember how wonderful she was so that makes my heart happy! I have to go for now-Ester is here for us.
Today started very early-4 am to be exact. I had to feed Sam about 2 hrs earlier than normal because she is having a sedated echocardiogram today and had to be off milk for 4 hrs. We got to the hospital this morning, did some paperwork, and met with the welcome coordinator Ashley. From there they did a chest xray and took her into the surgery prep area for her sedated echo. We met with the anesthesiologist which was probably the hardest part so far. We of course know the risks, but it's still hard to hear them. He said the risks of the anesthesia during heart surgery itself include voice problems, cognitive dysfunction (either temporary or permanent) and of course a bad reaction resulting in death. So for all of you out there praying, there are some specific things to pray against. We firmly believe she is not going to die as God has shown us glimpses of what her future holds. But that good old fear wants to creep in about the other stuff, so keep us lifted in prayer. We know God is in control-it's that human part of us that has a hard time hearing all the "possibilities". Right now I'm in the waiting room while they do the echo. They just masked her down with gas today and are going to get her blood while she is sleeping. Once they are done-in about 10 min from now, we will go on a tour with the head nurse and then meet with the surgeon. Funny thing-the nurse, Ester, was my nurse when I had my heart surgery 21 years ago. I remember how wonderful she was so that makes my heart happy! I have to go for now-Ester is here for us.
Wednesday, November 16, 2011
Ready for round 2!
Ok, time to get back to the blog. Sam had an appointment with her cardiologist yesterday and got the ok for us to proceed with surgery next week. He said everything sounds the same and the ECG hasn't changed, so that means the defects are still there-darn it! I keep praying for that miracle that they will close-we still have a week! :) So I spoke with the Children's Hospital yesterday to work out the details and everything is in place.
We fly to Denver on Monday 11/21. Sam has a half day of appointments on Tuesday that include chest xray, sedated echocardiogram (ultrasound), and meeting with the anesthesiologist and surgeon. We will stay the first two nights in a hotel across the street from the hospital. Then the big day...Wed 11/23. We have to be there at 6am for 7:30 surgery-this is fine with me since I would rather get it done first thing and then its over. From Wed until she is released, we will be staying there at the hospital with Sam. She will be in ICU for a couple days, then in her own room for another few days-at least those are the averages post op. We are scheduled to fly home 11/30, but would love it if she's doing so well we can come back sooner.
A couple of specific prayer requests: continued health for Sam! We still have a week before surgery and as we already saw-she cannot afford to get sick. The other big thing has to do with her coming home on oxygen. From what the cardiologist says, she most likely will come home on it, but there is a chance she won't need it. So that's what we are praying-that she won't need it. We are praying that our little blessing Sam will recover so quickly and completely that it will leave them wondering how it was possible-in which case we will give God the glory! And a final need is that we would be able to find a car to borrow while we are down there. To rent one is expensive when we will only really need it the first couple days and to get to and from the airport. We have a few connections in Denver, so we are praying that need can be filled.
I will again continue to keep everyone posted as things progress. Your prayers are what we stand on during this season of time! Thankyou so much for them and may the Lord bless you in whatever is going on in your lives!
"And we know that God causes everything to work together for the good of those who love Him and are called according to his purpose"! And we also know that "we can do all things through Him who gives us strength"!
We fly to Denver on Monday 11/21. Sam has a half day of appointments on Tuesday that include chest xray, sedated echocardiogram (ultrasound), and meeting with the anesthesiologist and surgeon. We will stay the first two nights in a hotel across the street from the hospital. Then the big day...Wed 11/23. We have to be there at 6am for 7:30 surgery-this is fine with me since I would rather get it done first thing and then its over. From Wed until she is released, we will be staying there at the hospital with Sam. She will be in ICU for a couple days, then in her own room for another few days-at least those are the averages post op. We are scheduled to fly home 11/30, but would love it if she's doing so well we can come back sooner.
A couple of specific prayer requests: continued health for Sam! We still have a week before surgery and as we already saw-she cannot afford to get sick. The other big thing has to do with her coming home on oxygen. From what the cardiologist says, she most likely will come home on it, but there is a chance she won't need it. So that's what we are praying-that she won't need it. We are praying that our little blessing Sam will recover so quickly and completely that it will leave them wondering how it was possible-in which case we will give God the glory! And a final need is that we would be able to find a car to borrow while we are down there. To rent one is expensive when we will only really need it the first couple days and to get to and from the airport. We have a few connections in Denver, so we are praying that need can be filled.
I will again continue to keep everyone posted as things progress. Your prayers are what we stand on during this season of time! Thankyou so much for them and may the Lord bless you in whatever is going on in your lives!
"And we know that God causes everything to work together for the good of those who love Him and are called according to his purpose"! And we also know that "we can do all things through Him who gives us strength"!
Wednesday, October 26, 2011
At home
Sorry I didn't get to this sooner! Sam was released from the hospital Monday, and we were happy to come home. She responded well to treatment and as of yesterday has not even coughed. Amazing! It has been so nice for the past couple days to just be back in our normal routine. I was sitting here watching the news and saw the huge snow dumping storm that hit Denver over the past 24 hours. I find it interesting that Dana +/- Sam and I were supposed to be driving back yesterday. I believe the Lord was saving us from that drive and the bad roads from the weather by keeping us here. I wish it wasn't pneumonia and the pediatric ICU that was needed to keep us here! Maybe its just my need to know the "why", but I do believe God has a plan in everything even when it doesn't make any rational sense to us. Whether it was the weather/roads He was protecting us from or some other reason, we still trust that God is in control.
Sam in now scheduled for surgery Wed. Nov 23. We will be leaving the 21st-flying this time to avoid any hang ups due to potential bad roads that happen this time of year. We are praying that Sam does not catch any of the numerous cold/flu bugs that also are part of this time of year. We really do just want to get her surgery behind us, so we can move forward. Thanks again to all of you for your prayer and support. I won't be posting much in the next 3-4 weeks unless something major comes up, and then I will start up again when we head to Denver.
Sam in now scheduled for surgery Wed. Nov 23. We will be leaving the 21st-flying this time to avoid any hang ups due to potential bad roads that happen this time of year. We are praying that Sam does not catch any of the numerous cold/flu bugs that also are part of this time of year. We really do just want to get her surgery behind us, so we can move forward. Thanks again to all of you for your prayer and support. I won't be posting much in the next 3-4 weeks unless something major comes up, and then I will start up again when we head to Denver.
Saturday, October 22, 2011
No more tubes!
At least in Sam's face! This morning my baby got to get rid of her feeding tube and her air tube. So now I get to just look at her cute little cheeks and nose. Her bacterial culture is officially negative, so we dropped to just one antibiotic-the less irritating one to her vein! Its been a pretty low key day-Dana went to the house and was out for a few hours. So me and Sammy just hung out in our room. Got a visit from Grandma and Grandpa Blankenbaker first thing this morning and from Great grandma Marjie late in the day. It was a day filled with smiles and coos and R & R-all good things. It makes the bummer of not being at home a little less. I sure do miss my Charlee and Tyler though-saw them briefly yesterday. It's gong to be hard when we are in Denver for a week or so. My posts are getting shorter-this is good-it means there's only good news!
Friday, October 21, 2011
Our own room!
Yep, we are out of ICU! My little Sam is doing even better today. We are now in room 454. She only has to be bothered every 4 hours now instead of 2! It's nice to have a little privacy as well-not that it was terrible in ICU since we were the only ones there-but I don't have to worry about bugging anyone. Her stats have been staying normal even as the air has been decreased. Still no bacterial growth so that's good! She also got to go back to eating on her own. No more feeding through the tube! She was very happy about that-she sucked it down in no time.
Bonus! The respiratory therapist just came in and got the ok from the doctor to turn off her high flow air. If she does good then we can get all the tubes off her face which would be great! She is so cute this afternoon-smiling and cooing at me! My li'l Punkin Pie!
Bonus! The respiratory therapist just came in and got the ok from the doctor to turn off her high flow air. If she does good then we can get all the tubes off her face which would be great! She is so cute this afternoon-smiling and cooing at me! My li'l Punkin Pie!
Thursday, October 20, 2011
Getting better!
Today is another day of improvement for Sam. Her vitals remain stable and she looks pretty good for a baby with lots of cords/wires/tubes attached to her. She has gained 1/2 lb since arriving so that's very good. Her oxygenation levels are remaining very high so she is being weaned from her air flow. If she continues at this rate, we should be moved out of ICU and into a private room tomorrow. That's where we will finish out the rest of her week long stay. The viral tests came back negative and we are still waiting on the bacterial cultures but they haven't grown anything yet. In light of her heart disease and high blood pressure that have been present since birth, she is at higher risk of getting RSV and if she got it, could end up in a pneumonia situation again. So since it's negative at this time, they gave her a shot of antibody against RSV today. I guess it's very spendy but prevents them from getting the RSV or at least lessens the symptoms. Its basically a super vaccine-instead of her body creating antibody to the vaccine, its just straight antibodies. Poor baby had to get that shot in the muscle so she's a little sore, but hanging in there.
I spoke today with the Childrens Hospital about rescheduling surgery. We have set up a tentative date of November 23-yes the day before Thanksgiving. That is 5 weeks out and we will just have to make sure everything is cleared with the cardiologist here in town.
We had several visitors today which is always appreciated. We can't say enough how much it means to have SO many people praying for us and for our little Sam. We know she is well covered! I'm hoping that when I update tomorrow it will be from our own room! Goodnight for now!
I spoke today with the Childrens Hospital about rescheduling surgery. We have set up a tentative date of November 23-yes the day before Thanksgiving. That is 5 weeks out and we will just have to make sure everything is cleared with the cardiologist here in town.
We had several visitors today which is always appreciated. We can't say enough how much it means to have SO many people praying for us and for our little Sam. We know she is well covered! I'm hoping that when I update tomorrow it will be from our own room! Goodnight for now!
Wednesday, October 19, 2011
Brighter day!
After a very rough night, I'm so very happy that Sam is doing much better today. I did go in after my 3 hours of sleep this morning to find she had pulled one of her IVs out. She is such a determinted little bugger! Her vital signs are stable, her color is much better, and she is acting more like herself. She will smile at me when I'm talking to her and she even gave me a couple coos! Music to my ears! They did put a feeding tube in her because of the risk of aspiration if she nurses, and she is tolerating it pretty well. We called the Childrens Hospital in Denver and canceled our surgery appointment for Friday. We are now looking at 4-6 weeks before we get to have that done. Bummer-I was looking forward to getting it done and moving on. Guess we just have to wait a little longer. I have spent most of the day sitting in a recliner holding the little pumpkin. She is happiest with mommy, so I'm happy to do it! She has all kinds of lines and tubes-makes moving her around quite the challenge but we manage. Her bloodwork shows changes consistent with a bacterial pneumonia and the preliminary viral panel is negative so that is most likely. Shes on a combination of good broad spectrum antibiotics, so should kill what ails her. When they placed her feeding tube today, they took an xray to make sure it was into her small intestine. So we got to see her lungs again and they already look better after just 12 hours. Amazing! God is still caring for my little peanut and watching over our family. Hope to have some culture results tomorrow and home in a couple days!
From speed bump to brick wall
Its 2am and I should be sleeping, but I can't. I have just settled into my lovely room on the pediatric floor of St Vs hospital-yes in Billings, not Denver. My poor little Sam is sleeping contently (after hours of crying from being poked and prodded) in the PICU. Let's back track a bit shall we...
Today was going well-I was very productive getting things ready for us to hit the road to Denver. We were on task to get a good nights sleep and head out after dropping Charlee off at school. Sam had been doing great-happy and alert. Smiling and cooing as she does all the time now. She did have that little cough-about 2-3 dry coughs every hour or so, but she appeared unaffected by them. I fed her at 6:30pm and she was up and alert for an hour or so, then fell asleep. When I went to wake her up for her final feeding before tucking her in for the night, I noticed her color was not good. She looked cyanotic (blue) and when I picked her up she was very warm. I took her temp and sure enough she had a fever-101.2. I offered her the bottle and she wasn't interested in eating at all. In fact it caused her to cough and now the cough was very moist and didn't sound good at all. Shortly after that she coughed a couple times, gagged and spit up a good amount of frothy bloody liquid. If I never have to witness/experience that again, it will be too soon.
Needless to say, we shoved our sleeping kids in the car, packed Sam in her seat and headed for the ER. I was a bit of a mess by now-all I could think about was that the cardiologist said this was the exact scenario we were trying to avoid by getting her heart surgery done before cold/flu season. She can't be on oxygen or it can push her into congestive heart failure. This is not good when you have respiratory disease/pneumonia. I know enough to know that her poor color and the fluid noise in her cough, she had serious airway issues-let alone the stress on her heart. For the first time since she came into this world I was terrified that we might lose her. We dropped the older kids at Grandma Kathys house and kept going. Our usual team of support met us there-my parents, my brother, and Theriaults. They are the people we wake up when things hit the fan. We spent very little time in the ER as they wanted us up in ICU asap. Once up here (4th floor-pediatrics), the poor baby got picked on a lot. IV catheter, blood draw, urinary catheter. And just as a side note, despite not being well, she is one strong little goober. She was hard to contain-think alligator role. At least her color was looking much better at this point and she didn't cough up any more blood. After all that I looked over the doctors shoulder as he evaluated the chest xrays. I knew what he was going to say-yep pneumonia within about 60-70% of her right lung field. Great...now we have to get through this ordeal before we can get back to fixing her heart. Of course for now all we need to focus on is getting her through this. If she doesn't maintain her status she is at now, which is acceptable, they will have to intubate and put her on the ventilator. I am really praying that doesn't need to happen. The doctor sent out blood work to determine if its viral vs bacterial-this will take a couple days. He expects she will be in the ICU at least 2-3 days but likely longer. So if you need to find me-I will be here.
I find it interesting...this morning when they bumped her surgery to Friday, I figured it was God's way of giving her one more day to clear up the dry cold cough. But now I see that it was all about us not leaving town last night. If we had started down the road-this would have all taken place about Sheridan. That is not where we would have wanted to be when an ICU was needed. I still wonder why God didn't just take the cough away or heal her heart defects, but His will is perfect and His ways are not our ways, so I just have to trust Him. My fear has subsided but concern still remains. I don't like set backs and changes in plans especially when the health of my baby is on the line. I have to pray for faith and trust-that God is still in control even when I have none in the situation. Sam will still need open heart surgery in the near future, but the specifics are now up in the air. I'm just focusing on getting her through this and then we will take the next step.
Thanks to all our friends, family and acquaintences for your prayers and support. We will continue to need it. Please continue to pray for our little Samantha-that she recovers from the pneumonia quickly and without complication. And pray for us, that we don't stop trusting our God! After all, He did create her and she is His child. We know she is in His hands and He has a plan in all this. Good night for now. I will keep you all posted.
Today was going well-I was very productive getting things ready for us to hit the road to Denver. We were on task to get a good nights sleep and head out after dropping Charlee off at school. Sam had been doing great-happy and alert. Smiling and cooing as she does all the time now. She did have that little cough-about 2-3 dry coughs every hour or so, but she appeared unaffected by them. I fed her at 6:30pm and she was up and alert for an hour or so, then fell asleep. When I went to wake her up for her final feeding before tucking her in for the night, I noticed her color was not good. She looked cyanotic (blue) and when I picked her up she was very warm. I took her temp and sure enough she had a fever-101.2. I offered her the bottle and she wasn't interested in eating at all. In fact it caused her to cough and now the cough was very moist and didn't sound good at all. Shortly after that she coughed a couple times, gagged and spit up a good amount of frothy bloody liquid. If I never have to witness/experience that again, it will be too soon.
Needless to say, we shoved our sleeping kids in the car, packed Sam in her seat and headed for the ER. I was a bit of a mess by now-all I could think about was that the cardiologist said this was the exact scenario we were trying to avoid by getting her heart surgery done before cold/flu season. She can't be on oxygen or it can push her into congestive heart failure. This is not good when you have respiratory disease/pneumonia. I know enough to know that her poor color and the fluid noise in her cough, she had serious airway issues-let alone the stress on her heart. For the first time since she came into this world I was terrified that we might lose her. We dropped the older kids at Grandma Kathys house and kept going. Our usual team of support met us there-my parents, my brother, and Theriaults. They are the people we wake up when things hit the fan. We spent very little time in the ER as they wanted us up in ICU asap. Once up here (4th floor-pediatrics), the poor baby got picked on a lot. IV catheter, blood draw, urinary catheter. And just as a side note, despite not being well, she is one strong little goober. She was hard to contain-think alligator role. At least her color was looking much better at this point and she didn't cough up any more blood. After all that I looked over the doctors shoulder as he evaluated the chest xrays. I knew what he was going to say-yep pneumonia within about 60-70% of her right lung field. Great...now we have to get through this ordeal before we can get back to fixing her heart. Of course for now all we need to focus on is getting her through this. If she doesn't maintain her status she is at now, which is acceptable, they will have to intubate and put her on the ventilator. I am really praying that doesn't need to happen. The doctor sent out blood work to determine if its viral vs bacterial-this will take a couple days. He expects she will be in the ICU at least 2-3 days but likely longer. So if you need to find me-I will be here.
I find it interesting...this morning when they bumped her surgery to Friday, I figured it was God's way of giving her one more day to clear up the dry cold cough. But now I see that it was all about us not leaving town last night. If we had started down the road-this would have all taken place about Sheridan. That is not where we would have wanted to be when an ICU was needed. I still wonder why God didn't just take the cough away or heal her heart defects, but His will is perfect and His ways are not our ways, so I just have to trust Him. My fear has subsided but concern still remains. I don't like set backs and changes in plans especially when the health of my baby is on the line. I have to pray for faith and trust-that God is still in control even when I have none in the situation. Sam will still need open heart surgery in the near future, but the specifics are now up in the air. I'm just focusing on getting her through this and then we will take the next step.
Thanks to all our friends, family and acquaintences for your prayers and support. We will continue to need it. Please continue to pray for our little Samantha-that she recovers from the pneumonia quickly and without complication. And pray for us, that we don't stop trusting our God! After all, He did create her and she is His child. We know she is in His hands and He has a plan in all this. Good night for now. I will keep you all posted.
Tuesday, October 18, 2011
Speed bump!
Woke up this morning running! I have a list very long of things to get accomplished before leaving tonight. First stop-take Charlee to school. Second stop-take the dog to be boarded. Doing good so far. On my way back home I got a call from the Children's Hospital. They explained that there was a baby born yesterday that needs emergency heart surgery and they were wondering if they could have Sam's spot on Thursday. They could reschedule her for Friday. One day is not so bad. Besides then we can drive during the day and we still have plenty of time. The other minor detail is that Sam started with a cough yesterday-not good! She is happy and bright, but if that cough is not gone in the next 24-48 hours they won't do surgery. That makes Friday better as it's one more day for her to get rid of it! So that's our new plan of attack. Keep praying for her that her cold symptoms miraculously disappear in time for her to have surgery Friday! If anything major changes, I'll let everyone know.
Monday, October 17, 2011
Getting Started
Hello everyone! This is my first attempt at keeping a blog, but I figured it would be an easy way to track Sam's journey. We are leaving for Denver tomorrow night after Dana gets off work. We will be driving at night to allow for the fewest stops since Sam won't need to eat. She is after all sleeping 8-9 hours every night-not bad for 9 weeks! We have appointments most of the day Wednesday and surgery on Thursday. I am busy getting ready for everything: kids packed, us packed, house clean and ready for carpets to be cleaned while we are gone, lining out family and friends who are watching our house and kiddos here. So with that in mind, not going to write much today-just getting the process started. :)
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