Update

The nurse came on Friday and Damon weighed 8 lbs 12 1/2 oz . He also had to get another RSV shot. Anybody want to take a guess at how much that shot costs? Well it's $1900.00 and somebody called on Friday and said that Medicaid denied the claim for this one because we had primary insurance. She was going to check w/ my ins. co and see if the pharmacy they ordered in from was acceptable or not. If not, then I really don't know what that means. One thing after another it seems.

The cardiologist, Dr Tong, told me last time that when Damon is around 4 months old he will schedule his heart cathederization in STL, then after the results of that they will schedule the second surgery. He will be 4 months old in March. It's coming way too quickly. I remember when I was growing up one time I did something wrong and my step dad told me that when my mom got home I was going to get a spanking. I had this sick feeling in my stomach all day long. It's kinda like that, only a million times worse.

Every part of me hates the thought of watching my son go thru those OR doors again. It was so hard the first time but now that I've gotten to know him and love him so much I can't even imagine it. The only thing I know for sure is that the Lord God will have to carry me thru that because apart from Him, I know I wouldn't make it.

Damon is so happy, smiling all the time and talking to us. He makes my heart melt!

Talk to you all later.

Sarah

PS- We really love reading your comments. I know you might not always have time to put one on, or if your like me you think that your comments always sound stupid, but it means so much to know that people are still checking in on us and that you care.

Little Piglet

Damon is eating more & more every day. For the most part he is taking 3 oz at a time but every once in a while he eats 4. We are so proud of him. I know soon he is going to weigh over 9 lbs! It's odd to think that he is almost 10 weeks old and is the size of a newborn. But he is holding his head up like a pro and smiling and cooing at us all the time. He is so cute! As I am typing this he is having a little dream and he just smiled and cooed in his sleep. I love it.

The other night I was cutting his fingernails and I cut one too close to the quick and he started to bleed a little bit. Other than feeling absolutely horrible about doing that, it would've been no big deal. However, since he is taking aspirin to thin his blood to prevent clots, his little finger bled for about 30 minutes. I was freaking out and had to call my aunt Chris who is a nurse. And what she told me to do wasn't any different than what I was already doing so I didn't really feel all that much better. It finally stoped and the amount of blood he lost wouldn't have filled up thimble but I definitely learned my lesson! Such are the trials and lessons of a heart mom.

Hope you are all doing well. Hopefully the snow and ice will stay away for a while. It's beautiful but it sure does make a girl feel trapped in her house! Talk to you all soon.

Sarah

Well Worth It

For those of you that aren't in close proximity to Missouri, be glad. We have had nothing but ice since Friday and it hasn't been fun getting to where we need to go. Some people are still without power and that would really be bad in our situation, so thank God for that. We luckily never lost power of anything at all which is a huge praise. Hopefully all of this will start melting pretty soon, so it will make it easier to get around. I think the only one that is happy to see the snow and ice is our Siberian Husky, Archie. He loves to play and roll around it in.
The home health nurse came today to check in on Damon. He weighed in at a chunky 8 lbs. & 6 1/2 ounces and he is still 21 inches long. His oxygen saturation levels are still around the 69-71% level which is where they want them to stay until his second surgery. His feedings are going really well, Damon is eating around three ounces every 3-4 hours.
Damon is getting where he can lift his head by himself and keeps it up for a long time. He loves to smile at all of us, especailly his big brother Myles. So far none of us have gotten the flu or a cold, please continue to pray that we will not get anything that would be harmful to Damon. He has been a joy in our lives and and if I had to do it all over again I wouldn't change a thing. Because of Damon's heart God has strengthened me to be a strong man, husband, and father. Although it hasn't been easy, to look at Damon and how far he has come makes it all worth it.

Iced In

Joplin and the surrounding areas are covered with ice this weekend. I went to Wal-Mart yesterday and it was nuts, I thought there were going to be a few fist fights over spaghetti sauce and lunch meat.

Jeremy had to work this afternoon and I didn't want to be by myself at home with the boys all night so we packed up and went to my mom's house. Jeremy ended up getting off work early because he got all his work done so he came over here too and mom decided that we weren't leaving. So here we are having a sleep over at Munkin's. It's funny because I got in trouble from my Pa and my grandma for driving over here. I started thinking about that. I'm old enough and responsible enough (in theory) to have two children, one with a serious health problem, but not old enough and responsible enough to drive 10 minutes away from my house when the weather is bad. Don't misunderstand me Pa and Grandma, I'm not mad and I would say the same thing to my children (and did to my brother this morning.) I just find it ironic because when we found out about Damon's heart problem and everything that would happen because of it nobody said "Oh you can't handle this Sarah" or "You aren't responsible, or adult enough, or stable enough to take on this huge task." But my family surely speaks up when it comes to something like driving on the ice.

The ironic part is that I feel complete confidence in myself when I'm driving on the ice, but question my ability completely when it comes to dealing with all the things that come up with Damon. I'm still not sure if I can handle it, but I have to. The only thing keeping me going is his sweet face and God's strength. Every time I look at him I think "I'm so proud of you, my brave boy, and I'll keep going and fighting for you because you are so worth it."

Pa, Grandma, Mom, I love you guys and appreciate you telling me I shouldn't be going anywhere. I know it means you love me too.

Talk to you later. Sarah

Update

Hello everyone! I'm happy to say that the nurse came today and Damon now weighs 8 lbs 1 oz!!! He has made it past his birth weight! She didn't believe the scale was right and she weighed him twice. I'm so proud of him and how well he is doing. He eats more and more everyday and we are trying to figure out breastfeeding every once in a while.

Jeremy got a new job that he will start later in the month. It pays a lot better than his job at JC Penney's and his insurance will start the day he does so that is a big blessing.

Myles has a little cold so pray that he will get over it quickly and none of the rest of us will catch it. We are doing well otherwise and taking one day at a time.

I'd like to say a very special Happy Birthday to Cade Waters! He is one of our HLHS buddies in Texas and he turned 1 yesterday! We are so happy for him and we celebrate his life even though we can't be there with him and his family.

God is good! Talk to you all later.

A Night Out on the Town

Last night was the first night in a long time that Sarah and I got to go out and eat by ourselves. I t was really nice.We ate at Johnny Carino's, which is a great italian resturaunt in Joplin. It was great to just enjoy our time together, because with everything going on we don't get much time to ourselves. A big thanks goes out to grandma Baert for coming over and spending time with the boys. They had a great time watching Cars.
Damon continues to eat really well without his tube in. He is just a good baby all around. Damon is just so much happier without the tube in and Sarah and I are happier too. Please continue praying for is eating and for his continued improvement. God has been really good to us through all of this. He has truly showed us his faithfulness through every phase of this process. We know that God will continue to guide Damon's life in His direction. Talk to you soon.

Grip the Lip

Damon is doing better and better each day. He is still without the NG tube and is doing great. He is so much happier without the tube in. The nurse just left our house and Damon now weighs 7lbs 12 1/2 ozs. Sarah and I were concerned that Damon might be burning too many calories during his feeds, but once again he has proved us wrong. We are no longer feeding Damon every 3 hours. We consulted our team of doctors from St. Louis and Joplin and that is what we all came to agree upon.
Here are some things that Damon is doing now. He is cooing and talking gibberish once in a while and for those of you that were at the hospital know that Damon from the day he was born has had a good grip. Well last night Sarah was talking to him really close to his face, when all of a sudden Damon decided to grab Sarah's lip. It took both Sarah and I to get her lip loose.
Please continue to pray that Damon will keep eating well and keep growing. We thank all of you that have made it over to see Damon and our family. Hopefully we will have more pictures of Damon on the flickr icon, so check them out.

In & Out, In & Out

Damon went the whole weekend without his NG tube, but Sunday he didn't do as well, and the total ml's that he didn't eat added up to almost a whole bottle so we said on Monday if he didn't eat all of every bottle, we would have to put it back in. We ended up putting the NG tube back in after his 10am feed because he only took 1/2 of it by mouth and we were concerned that he might get dehydrated if he went another day like that. After we put it back in and put the rest of his milk thru the tube, he threw up (which he hadn't done when it was out) and he also threw up after the 1pm and 4pm feeds. Plus he didn't eat as much from the bottle as he had when it was out. We could tell that he was just a lot more content and happier with the tube out.

We called some of the dr's and told them we knew he was better off without that tube and we asked if we could take it out again and just try feeding him when he acted hungry instead of every 3 hours. They all said that should be fine and that if we needed to, we could add some calories to his milk to make up for any weight loss he has (if any).

So that is where we are now. He only woke up once during the night last night and ate every drip of his bottle and would've ate more I think. It was so great not having an alarm going off at 1am! I want everyone to continue to pray for him to get stronger and eat more and more and not lose any weight. We know God will come thru. Read Eph 3:20

Talk to you all later.

Sarah

PS-Happy New Year (and I'm believing that it will be!)