Day by day

Not too much to report today. We've just been going thru the normal every day stuff. Sunday night our new friends Tyson, Jenny, & Hayden came over & had dinner with us. If you don't remember, Hayden was born 3 weeks after Damon & he has HLHS too. We had a good time getting to know them a little bit & took some pictures of the boys together. Hayden is a lot bigger than Damon even though he is younger. That little guy likes to eat! They are both doing great, Praise God!

Time is going by so quickly. We have a cardio appt Friday & Dr Tong said that his heart cath would probably be in April so we might be looking at scheduling that soon. I don't really know how it all works though. Its all scary.

On Sunday it was my turn to go to church & we sang this song that says "I surrender, all to You, all to You. " I felt like I needed to surrender all my fear to God so that's what I did. I told Him that from now on the fear I have is going to be turned over to Him. How can I see what great things He is going to do in Damon's life if all I can concentrate on is how scared I am? That doesn't mean there won't be fear for my son, but from now on I will not hold on to it. I will not let it stop me from seeing the good. I will not allow fear to control my life anymore. It is all surrendered to You.

Well my arms are getting tired! One of them is typing this all by itself & the other is holding Damon so I'll talk to you all later.

Sarah

Freedom

Today we went OUTSIDE AND TOOK A WALK!!!! It felt so good to get out and not be going to the doctor. I am loving this weather so much. We walked around our neighborhood for 30 minutes and Damon loved it so much that he fell asleep. He looked so cute in his little hat with the ear flaps that I found at Wal*Mart yesterday for $1.

We did actually go to the doctor today too. He weighs 10lbs 4oz and is 22 3/4 in long. Dr Grote said he could start eating rice cereal if he wanted to so we might do that in the next week or so. He said Damon looked like he was doing really well.

I know I shouldn't expect the doctor's and nurses who don't specialize in heart conditions to know everything there is to know about HLHS but I think a little research on their parts would do them some good and help them in taking care of him. Today when we got to the dr, two nurses came in to take his weight and do the initial stuff before Dr Grote came in. One of the nurses we had never seen, the other one we always see. The new one saw his scar and said "What did you have surgery for little guy?" I said he has HLHS and she says "Oh" like she know exactly what I'm talking about. Then the other nurse that we see often, was listening to his heart while this was going on and she says "He has a loud murmur too." I said he will always have a murmur and she looked at me like "why". I said "He only has half a heart." She dropped her jaw and said "He only has half a heart?" I said "Well that's what HLHS is, his aorta and left side of his heart never developed properly." Then the other nurse asked if he would have to have another surgery. I think I will print them off some info from the internet to keep in his file. Talk to you all later.

Sarah

Routine

Everything is pretty much going on around here as normal as possible. Damon is doing well, although right now he has thrush. Luckily we already had a prescription that would take care of it so all it took was one phone call to Dr Grote's office and we knew just what to do. Babies thrive on routines and we have somewhat of one going on. I feel lucky because neither of my boys ever had one that was so strict that we couldn't stray from it sometimes. I've heard of some people who had to base their whole lives around when their kids ate or took naps. I keep wondering though, where does another surgery fit into the routine? It's coming up so quickly and I hate it. The fact that he is a baby and doesn't even know what's going on is good and bad. It's good because he doesn't have to dread it like we do, but it's bad because one day he's going to be living his little happy baby life and the next day he wakes up from this major surgery and he's in pain and uncomfortable and doesn't know why. There's nothing routine about that. I know it has to happen and he will be better off after it's all over but as a mother I can't even bare the thought of it. It puts a lump in my throat and a knot in my stomach. Sorry to be so down today, it just happens sometimes. Talk to you later.

Sarah

Did you know....

...that Damon has red hair? It looks brown in the back but when it's in the sun it is flaming red!

...that Damon only wakes up usually once during the night? When I pick him up out of his bed I take him to change his diaper and when I lay him down again he gets soooo mad!

...that Myles hates to hear his brother cry? Usually he will put his hands over his ears and sometimes he will come up to him and say "Damon what is your problem?"

...that Damon loves his bath? He just sits in the warm water and looks all around the bathroom.

...that Damon hates to have his hair washed? He started screaming last night when I began washing his hair.

...that Damon loves his cradle swing? He would swing in that thing all day. It has a aquarium themed mobile on it that he loves to stare at. It's good at putting him to sleep too.

...that Damon's pacifier is called his "bonkie"? We called Myles' that when he was a baby so it kinda stuck with Damon. Myles calls it his "donkie".

...that Damon doesn't have a birth mark that I can find? He does have what's called a stork bite on the upper part of his back though.

Just a few little bits of info that I thought I would share. Talk to you all later.

Sarah

Getting over it

We are all getting over this nasty cold we had. Damon did end up getting it too, but he is ok so we are grateful for that. Thanks for all your prayers. It's so cold here, around 20 degrees today. I can't wait for spring and summer. I have always preferred cold weather, but I have been converted. The cold makes me feel so trapped. Plus our house is really drafty so I we always have to keep the heat turned up and our gas bills would be rediculous if it weren't for even pay.

The nurse came today and Damon weighed 9lbs 13oz. I thought he would have weighed more, but his body has probably been using all it's energy on fighting this cold so I bet by next week he will be up to 10lbs. He has to get another synegis shot next week too. I'm not sure but I am hoping this will be the next to last one. He only has to get it during the cold/flu season. I hate it when he has to get that shot, it's an awfully big needle for such a small leg.

Yesterday something cute happened. I think I've mentioned before that whenever Damon sneezes he makes this really cute sound afterward. Well yesterday Myles and I were picking up his toys and Damon was across the room in his swing and he sneezed. This time when he made his sound it sounded like he said "uh oh". Myles looked up at me and smiled great big and said "Did you hear Damon, he said uh oh."

Today we took some pictures so I'm going to try to get them on the flickr icon today. It takes awhile on our computer so we'll see. What else....oh I quit pumping which is very releaving. It's kinda bittersweet though. I thought long and hard about when I wanted to quit and at first I felt really guilty, but I got over it and came to the realization that a lesser woman wouldn't have even bothered and just fed him formula so I feel pretty good about myself. Plus it's so nice to be able to go somewhere and not have to rush home so I can pump. Plus we have a LOT of milk frozen and we've started to mix it w/ formula so it should last for a while.

Talk to you all later. Please continue to pray for us, we still need your prayers.

Sarah

What a day!

I have had a cold for the past few days and it isn't getting any better. This morning when I was done feeding Damon at around 7:30 all I wanted to do was go back to bed but Myles was awake and already being his strong-willed self. I was going to call Jeremy and my doctor to see if he would call us in a prescription for our colds and then I had to call Damon's pediatrition to ask him a question.

Until late yesterdayDamon hadn't really been showing signs of the cold that the rest of us had but thru out the day yesterday and today he has been sneezing more and coughing. His cough is pretty rough right now, it makes him gag kind of, it looks like it really hurts.

Our dr said he would call in a prescription but he wanted us to come in and get our throats swabbed. Damon's dr wanted to see him at 1pm just to be safe. Myles continued to misbehave all morning and I was walking around in such a daze that I wasn't even paying attention to it. My mom called and said "Tell Myles to get his bag packed because Pa is coming to get him. He is going to spend the day with him and then spend the night with me." "Ok" I said.

I got in the shower, got Myles packed up for the night and sent him off with my Pa, then got the diaper bad ready to go. I took Damon over to my grandma's while I went to my dr to get my throat swabbed, then went back to her house to pick him up to take him to his dr. Then went back to her house and dropped him off while I went to Wal*Mart to get our scripts.

His dr said that Damon's lungs were clear, which is what I was most worried about. He told me to get some Robitussin and give that to him and it would help with his cough. I gave it to him when we got home and he didn't like it AT ALL! He's just like me in that way, I hate cough syrup.

Please pray for all of us to get better from this cold, it's really taking a toll on me. We all have meds so hopefully it will get better soon. Talk to you all later.

Sarah

Update

Myles' cold is getting better. I called and got the dr to call in a prescription for him but he still has a terrible cough that hurts his throat really badly so please continue to pray for him. Jeremy and I both got sore throats yesterday and I have a little bit of a runny nose today. I am praying constantly that it won't get any worse. Thankfully Damon doesn't seem to be getting it.

He is changing so much. I am going to try to get some more pictures uploaded to Flickr soon and I also wanted to try to put two on a post, one of him right after we can home and one recent so you could see how different he looks. I was talking to my dad yesterday and I told him that Damon doesn't really look that much like Myles anymore. He asked who he looks like and I said he just looks like himself. I think all the weight he has gained in the past few weeks has went right to his cheeks, with a little going to his thighs. It's so cute!

I want to also give a praise report. I mentioned last week that my mom slipped on the ice and hurt her hip. She was still having trouble walking w/out crutches a week later so she went back to the dr. He was convinced that she had fractured it and would need surgery immediately. Right after she told me that I prayed for God to make it the best case senario. After an exray, a ct scan, and an mri they did find a fracture but it was in a place that didn't require surgery so she can just take it easy and it will heal on its own. God does hear our prayers.

The nurse is coming today at 2pm, I'll try to give another update later today or tomorrow morning. Talk to you later.

Sarah

Pray

Well Myles has another cold. This one seems to be worse than the last one. He is coughing and sneezing a lot and just doesn't feel good. I ask that you all please say a fervent prayer that he will get over this cold asap and also that the rest of us don't get any of it, especially Damon. Myles has a hard time when we tell him that he can't get close to Damon because he is sick, I think it hurts his feelings.

Damon is doing well. He is so happy! We were at my mom's (Munkin) yesterday and she was holding him and I looked over and he had this look on his face that wasn't really a full smile but it looked like he was half-smiling about something. It made me think that he will be one of those people who always has a pleasant look on their face. Have you ever seen anyone like that? I am definitely not one of those people. Most of the time I have this serious look on my face like I'm concentrating really hard, or I'm mad about something. Even if I'm in a good mood my face still looks like that. I've tried to change it, but I just can't. There is this girl that I went to high school with and then later we ended up working together at the bank who has one of those happy faces. Her name is Adrienne and everytime I see her she always has a pleasant smile on her face. You can't help but feel better when you look at her because she always looks happy. I hope Damon turns out like that. His smile instantly makes me feel better and I hope he can do that for others when he gets older.

I read on someone else's page that this week is Congenital Heart Defect Awareness Week. (Congenital means that the defect occured at birth by the way.) So if you have time, google something about CHD's and learn more about them. Talk to you all later.

Sarah

Job Change

Effective February 1, 2007 I am no longer an employee of Arvest, the place I have worked for the past 7 years. My new employer is a new company called Myles & Damon, Inc. The pay is lousy and the hours are rediculous but I must say it is very rewarding and my new bosses seem to really like me a lot.

Yesterday Damon had a dr's appointment w/ his cardiologist. All his tests looked the same as last time which is good and his sats were higher yesterday, in the low 80's so that made us happy. Dr Tong said that he thought the heart cathederization would probably be in April and the surgery might be scheduled for sometime in May or June. Now that he has actually put some sort of a date on those things (even if they are totally vague) I have it in my head that that's when they will occur. And I couldn't blame all of you for thinking the same thing, but let me just say this; nothing is set in stone. It all depends on Damon and how he is doing. I doubt that the surgery would be scheduled for any later than June, but it's possible that it would have to be sooner so don't be surprised if you read something different on this blog someday.

We are going to try to get some nipples w/ larger holes for his bottles b/c it takes him a really long time to eat sometimes and that's not a good thing, it makes him use up too many calories. Otherwise he is doing pretty good and so is everyone else.

Talk to you all later.

Sarah

Laughter

I don't know if you all read the comments that people put on our site but my friend Teloa put one on about laughing in the face of adversity. Laughter is very healing, and always makes me feel better. I'm laughing right now as I go thru the 3 inch tall stack of Explanation of Benefits from my Insurance Co.
Good advice Teloa!

When I was still in the hospital after having Damon, Jeremy and mom were in my room and Jeremy said something really funny that we all started laughing at. Well I was pretty torn up and so very sore from his birth and everytime I laughed it felt like my insides were going to fall out and it HURT! I was trying so hard not to laugh and the more I told them to quit laughing the harder they laughed. I finally was able to sit down on the bed and stopped laughing long enough to start crying. They couldn't tell I was crying, they thought I was still laughing so when I looked up w/ tears running down my face they were all kinds of confused. I still can't explain why that happened but one minute I was trying to tell them to quit laughing while I was laughing and the next I was sobbing trying to tell them. Then I stopped crying and started laughing again, it was really weird. Hormones I guess.

We also had some comedic relief from Roy D Mercer cds that we would listen to while we drove back and forth from the Haven House. That guy is hilarious.

We're doing well here, it snowed another 3 1/2-4 inches yesterday. It is so beautiful, but makes me feel even more trapped in the house. Please say a prayer for my mom, she fell on the ice and bruised her hip really badly and can't really walk yet. It's very painful. Talk to you all later!

Sarah