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.
Playing with her ball

Checking out her new mini pillow pet from Blake and Jackie


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!

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!

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...

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. 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.

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.

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"!