Good News!

Yesterday the home health nurse came and we were going to change the NG tube together. I took it out and he was so cute so I took a bunch of pictures. We decided to see how well he would eat with the tube out and he ate his whole bottle! I called Dr Gandhi to see if we could leave it out and see how his next feed went. He said it would be fine to leave it out for a couple of feeds but just don't go much longer than half a day without putting it in if he wasn't finishing his bottles. I am thrilled to say that Damon has finished every bottle he's had since his 1:30 feed yesterday! A couple of them he has left a few milileters, but he is still getting the minimum of 60mls that he needs. He seems much happier with out that tube and he looks so much better! It's great to see his whole face. This is the first time that he has been completely free of any kind of monitor or aparatus since he was born. We need everyone to pray very hard that he will continue to eat all of his bottles and to do it quickly so that he isn't burning up all the calories. We are going to have faith in God that He will help Damon eat so that we don't have to put that tube back in.

Yesterday when the nurse was here she gave him an RSV shot. Myles was home and he was watching as she was giving it to him. At first he had his hands over his ears cause he knew Damon would cry. Then when she put the shot in his leg he looked at me with the saddest eyes. I told him it was ok, and then he started to cry and went behind me and laid his head on my back and cried and cried. It broke my heart. He loves Damon so much.

We are doing pretty well but please continue to pray for Damon to get stronger and gain weight. Talk to you all soon.
Sarah

Trust

Why is it that we are always so quick to assume the worst when something goes wrong? God has proven Himself to us time and time again, yet we fail to trust in Him to take care of us and Damon. This weekend Damon had been throwing up a lot of his milk after he ate. We hadn't really been that concerned until yesterday and last night it was worrying Jeremy and me very much. We were worried that he was going to get dehydrated or lose weight again. I was concerned that it might be a condition that one of my best friend's baby had. I can't remember what it is called but the valve that goes to her stomach didn't work right and she had to have surgery. She was fine after that, but I couldn't bear the thought of Damon having to have surgery again before he was scheduled to.

I called Dr Gandhi and Dr Grote and they said (collectively) that we should stop using the iron drops for a couple of days and to give him plenty of time to burp in between the bottle and the tube and he was also prescribed Zantac for reflux, just in case that's what was causing it.

Then the home health nurse came and we told her what was going on and she said that iron drops can make babies nausious and that it was probably just that. So my mind was thinking of all these terrible things when the solution is probably very simple.

Now on a better note, his sats today were between 78-83, so Dr Tong was right, the iron did the trick. He also weighed in at 7lbs 7oz today! So he didn't lose any weight over the weekend, even though he had been getting sick. We praise God for those things and we will trust in Him to take care of the other things too. He is a faithful God; that we have learned for sure.

Talk to you all soon.

The Best Gift of All

We just had a few minutes and wanted to wish all of you out there a very Merry Christmas. We have had somewhat of a busy day spending time with our family. It has really been fun to see how excited Myles is to get and give presents. Damon is doing well and continues to improve. In the last couple of days he has been throwing up his feeds at least once a day which is a cause for concern, but we are watching him closly and the home health nurse is coming by tomorrow morning. We hope that you realize that the best gift of all is our Lord Jesus Christ. He has blessed our lives this Christmas and we hope that he blesses yours as well.

Appt

Thanks to all of you who prayed for Damon, yesterday and last night were pretty scary. We went to see Dr Tong today and his chest xray, EKG, Echo all looked good and his heart and lungs sounded good. He was back up to 7lbs according to their scale. His sats were still in the mid to high 60's which is kinda low compared to what they had been. Dr Tong said that since all those tests came back fine and he hasn't changed in his coloring or behavior he is pretty sure his sats are low because he is anemic (sp). He said that it is very common for babies around 4-6 weeks old to become anemic because the infant hemaglobin starts to drop down and the adult hemaglobin hasn't quite picked up enough yet. He told us to get some iron drops and put those in his milk and in about a week we should see his sats go back up. We are going back to Dr Tong next Wednesday to check on this.

We are going to pray and trust God that this is really all thats wrong. We covet your prayers for this too. As for his weight gain, Dr Tong said we should call Dr Grote, his pediatrition and ask him what he thinks. We might have to add some calories to his milk so he is taking in way more than he uses up.

Yesterday we had called and had Dr Gandhi paged because he hadn't heard from the home health nurse or Dr Tong's office. He called back within 20 minutes and said for us to make sure we saw Dr Tong in the next two days, especially with the holiday weekend. He called tonight to check on Damon. We are continually impressed by him. He is sooo busy and he took time to call and check up on Damon. Thank God for good drs!

Keep praying for Damon please, every prayer you send up is heard. Talk to you all soon.

Sarah

Please Pray

The home health nurse was just here and Damon's sats were in the mid 60's. Dr Gandhi told us they would be in the 80's so I'm kinda worried about that. Dr Tong the cardiologist said to let him know if they went below 70. He also lost a 1/2 ounce since the last time he was weighed and that is not good. He needs to be gaining about 1 oz a day. She was going to call Dr Tong and then let me know what he said. Please pray that Damon will continue to gain weight and for his sats to go up. Will let you know what I find out.

Change

Hello everyone! I managed to find a few spare minutes to post. Damon is doing well. He continues to get better at eating from his bottle everyday. We still have a little ways to go, but considering what he has been thru, he's doing really well. He has already changed so much since he was born. His face looks different. He is getting bigger, actually starting to fill out his clothes. (At least length wise. :~) He has also started to coo a little bit. I can't wait for the day when he smiles and it isn't gas related!

Myles and Munkin went shopping yesterday and Myles picked out presents for everyone in the whole family. It was so cute! I got a feather duster and a bead kit to make a necklace, Jeremy got a putty knife and some sodering wire, Damon got a ducky wash cloth for the bath and some socks, and Kassie and Archie both got a leash, some dog bones, and the tiniest little bowl for them to both eat out of. He also picked out a Christmas cow for the whole family to share. It was too cute!

Our lives have changed so much in the past few weeks. I have always been reluctant, or nervous about change unless it's on my own terms. So God chose to put me and my family on a path where we have no control over what tomorrow holds to teach me to completely trust in Him. It's really hard, but He has proven Himself faithful everyday.

I wrote last week about the little baby who is in STL right now. His name is Hayden and he has the same heart condition as Damon. His family lives in Webb City. I talked to his mom yesterday and they are coming home today! Just one week after his surgery. That is so amazing. Even Dr Gandhi said that a recovery from a surgery like the Norwood is unheard of. Praise be to God for the miracles he has worked in these two little boys, Damon and Hayden. It is such a huge blessing to our family and theirs too that we will all be home for Christmas.

We have some pictures we want to put on, but have found trouble finding the time, so we will get to that asap. That's all for now, I have to go see about somebody's mid-morning snack. Talk to you later!
Sarah

A Gift From God

Damon continues to improve in every area that he needs to each day. At one point when the home health nurse came over she was concerned that he wasn't gaining weight each time that she was there. Well she came yesterday and weighed him and Damon weighed 7lbs, which is pretty close to his birth weight. Damon is an amazing child and as we get closer to the Christmas season I can't help but think that he is a gift from God. All I know is that we are blessed as parents to have two handsome boys who love each other and love us.
We would love to have some company. I ain't begging yet, but it seems like everyone is just a little scared to come over and see Damon. I understand if you are sick, but if you just have a runny nose or something we have masks that you can wear. I have a seasonal job at the mall and I know Sarah gets kinda lonely when I am not here and I think some company would really brighten her day. So if you haven't came by and visited, please do and for all of the those that have thank you so very much. Your love for our family really has been overwhelming. Damon does have a cardiology appointment on Thursday, December 21st, to see if he can go off one of his medicines. We will update more on that as Thursday gets closer.

First Day

It was the first day of being by myself w/ the boys while Jeremy was at work. It wasn't too bad, I didn't get very much of anything done except feeding and pumping, but hey I got those two things down and they are the most important. And I even managed to take a shower somewhere in there too. My mom (Munkin) and the speech therapist and the home health nurse both came by today too, so I wasn't totally alone. It was a pretty normal day I guess and for that I'm greatful to our faithful God.

There is a couple from here that found out about a week after we did that their little baby had HLHS. They are up in STL right now going thru almost exactly the same experience we did. Little baby Hayden is having his first surgery, the Norwood, in the morning, done by the same surgeon as we had, Dr Gandhi. Please say a prayer for Hayden, his mom and dad, Dr Gandhi, and all the nurses and others involved with his surgery. Pray that he does as well through out his time there as Damon did.

Talk to you soon.
Sarah

So what now?

Damon and all of us for that matter are asking this question. We're home, so what now? I guess the answer is just simply, life. At least that is my prayer. Although life as we know it now is definetly not what is used to be.

I'm going to tell you a secret about me, I'm a big day dreamer. My mind thinks up things and plays out situations all the time. I find myself thinking tomorrow we will go to this store, or we'll go do this, or I'd like to try out that restraunt sometime. And then I remember that we can't do things like that anymore. But you know what? It doesn't matter. Our little baby is home right now and doing well and that makes up for missing out on anything else.

I have read other baby's stories about their HLHS journey and many of them include emergency trips to the hospital after first coming home. I look at Damon and I think that won't happen to him, he is doing so well. But then again I never thought I would go through an experience like this either. I'm not saying that I expect it to happen and I certainly pray everyday that it won't. But as I said above, I'm a daydreamer and my mind takes over sometimes.

So pray that for now our life is just that, life. If God will take care of that, then we will settle for only half of our family going to church and only getting take out from that restraunt we wanted to try.

Feel free to keep calling us, we love to hear from everyone. Talk to you soon.

Yesterday

We had our first cardiologist appointment in Springfield yesterday at 3:30. Damon had an EKG, which he hates. They put about 10 stickers w/ wires coming off them on his little body. Then he had an Echo and he did really well through that. Both those tests looked fine. Dr Tong is really nice. He talked to us for about 30 minutes or so and answered all our questions. We go back to him in two weeks. We are going to get a chest xray on Damon before we go and Dr Tong said if everything looked good with that he might be able to stop taking the lasics, which is one of the meds he came home on.

Last night at the 1am feeding Damon pulled his NG tube out. If some of you are not aware, that is a tube that goes down his nose, into the back of his throat, and into his belly. Since he can't eat all his food by mouth yet, that's how we feed him the rest. We learned how to put it in while we were at the hospital but each of us only did it once and when I did it, I cried more than Damon did. So last night when that happened Jeremy and I just looked at each other like "Oh NO!" He went to get the supplies to put a new one in and while he was gone I just prayed for God's help when we did it so that we wouldn't make any mistakes. We got the tube in without any problems, although Damon wasn't real happy about it. I can't imagine having someone shove a tube up my nose and into my stomach; Damon is such a brave, good boy.

Most of you know that Jeremy has been looking for a job for about the last 6 months or so. It has been very stressful to have that burden on top of everything going on with Damon. He has been very dedicated to searching for jobs and calling about jobs and for some reason just hasn't had very much luck. Not because of anything he has done at all, I think God's plan and His timing was different than ours. He had an interview sometime in Oct and didn't get that job so we just decided that he should hold off on looking until after we came home from STL since we weren't sure how long we were going to be up there and no place would likely want to hire someone who would need "x" amount of weeks off right after they started working. Well yesterday he got a job at JC Penney's. It is seasonal help and it doesn't pay much, but it's a job and the hours will be good for our schedule right now. He will continue to look for something more permanant in the mean time too. I'm very proud of him and how he has been so dedicated to finding a way to support our family. He worked lots of odd jobs for people and I'm grateful that he was willing to do that. Some men wouldn't be.

We would also like to say thank you once again to all of you who have chosen to donate money to us for different expenses like traveling to and from STL, meals while we were up there, etc. It is such a blessing to know that we have family and friends who would be willing to help us in this way without asking or expecting anything in return. We know in our hearts that if it wasn't for you, our lives would have been even more stressful. Thank you from the bottom of our hearts. There is still money coming in from here and there and everytime we open a card and find a check it almost brings tears to my eyes to know that people care that much. The card itself is enough, just to know that you are thinking of us. So thank you again.

Myles went and got a flu shot today. He was so brave. We told him what would happen and he never once said he didn't want to or acted scared. When they actually did it, of course he cried and I did too, but he recovered quickly. He is such a good helper, always right there to get us whatever we need or talk to Damon if he is crying.

Merry Maids came today to clean our house. Thanks so much to those of you who pitched in on the gift certificate for us, you know who you are. That was an awesome idea. Our house looks great.

I guess that's all for now, we love you all and will talk to you soon. Sarah

Changing Everyday

Tomorrow will be Damon's first appointment with his new cardiologist, Dr. Tong. His office is in Springfield which is a whole lot closer than STL. This is just a post surgery appointment that he would have had with his surgeon, but since we are so far away they scheduled it with Dr. Tong's office. These appointments in Springfield will be once a month just to check on Damon's progress and Dr. Tong will be in direct contact with Dr.Gandhi. That way they will know how he is doing so they will know when to schedule his second surgery. Along with the cardiologist appointments, Damon is seeing his pediatrician once a month, and his home health nurse is coming by for the next couple of months to check his status too. Damon will be so bombarded by doctors he will probably become one.
Damon is progressing quite well. At first, he wasn't eating much from the bottle, which means more food going through his feeding tube. But in the last few days he has been taking a lot more through his bottle and a lot less through his tube. He is also waking up more during the middle of the night, which is a good sign. It means he is getting hungry and wanting to eat from the bottle. He has changed so much even since we have brought him home. We have enjoyed to see him smile a lot. This morning Sarah was holding Damon on our loveseat and I was tickling his leg and he had the biggest smile on his face. It was so cute. We hope that many of you will get to see Damon really soon.

Home Sweet Home

We have only been home a couple of days, but I can say that it is great to be home. There is not better time than to be at home with our kids than now. Myles is such a proud big brother and he is definetly going to take care of his baby brother. He makes sure that everyone that comes over to see Damon washes there hands. So far Damon has been a really good baby. He loves to just lay around and look at things. Although we are home we have had to make some adjustments. Damon needs to be fed every three hours, which means we are up throughout the night feeding him and caring for him. That has been really hard to get use to, but hopefully we won't have to do that for very much longer. He is taking a lot more out of the bottle than he used to, that is for sure. Thank you all for all of your help and especially all of the meals that have been brought over they have been great. Damon being out of the hospital is the greatest Christmas gift our family could have this year. Although due to our current financial situation Christmas will be very different this year, it has been a reality check to see what is really important in our lives. I can say without hesitating that our Lord, kids, family and church are all things that mean the most to us in this Christmas season. Thanks to all for showing love to us by sending up prayers for our little miracle, baby Damon.

Home at last

We got home yesterday about 3:45pm and it was such a great feeling to pull into our own driveway. Myles and Munkin were there to welcome us and Myles was so excited to finally get to see Damon in person with out all the wires and tubes hooked up to him. He touched his head and looked at me and said "you have to be very gentle."

It seems like we packed up everything but the tv to go up there and we came back with about twice what we left with. We are trying to get everything unpacked and put away and find places for everthing else we didn't have before.

We had a good night last night. Damon didn't wake up except when we woke him up to feed him, he is a sound sleeper! I was unsure of how he would act when we got home. I didn't know if we would have to watch him every second to make sure he was ok or what. But so far he acts just like a regular newborn; hates to have his diaper changed, hates to have his clothes changed, and all that other normal stuff.

If you are wondering about calling or coming over, here is what we have to say. Call as much as you want, we will not be going anywhere really except to the dr, so someone will always be here. If you are wanting to come and visit that's probably ok too. However, if you have ANY signs of sickness in any way, coughing, sneezing, runny nose, flu symptoms, ANYTHING AT ALL, please don't come over. Also, since kids can't really tell you when they don't feel good, please do not bring your kids with you unless they are older than 12.

We are not trying to be rude at all, these are dr's orders. Thank you all so much for everything while we were gone. The prayers, favors, cards, everything. We love you and will talk to you all soon.

Going Home

We are checking out of the Haven House right now. Because of the weather and road conditions we are staying until tomorrow, but wanted to have all of our stuff w/ us so that as soon as we got the word, we could get in the car and leave!

Last night Damon gave us a little scare. His sats were dropping down and got down into the high 40's at one point. There were three docs in his room and none of them could come up w/ a likely explanation b/c his chest sounded fine, they did an xray and it looked fine, his lungs sounded fine and he didn't look or act any different. It was probably a faulty oxygen probe, but it was scary none the less. So as long as that doesn't happen again today or tonight we'll be released. We prayed over him last night and just told God that Damon's life is dedicated to Him and he knew him before he was even created. Every fear that we have had so far has been met and overcome with God's healing hands, how could He abandon Damon and us now? I know He won't.

We're excited to come home, and can't wait to have our family all together. We love you all and keep praying. Just because this first big obstacle is almost over doesn't mean that your prayers still aren't needed a lot.

Sarah