Post surgery

Here is a before picture, right after, and a few from today (4 days post surgery). Jackson has lost almost 5 pounds and he did not have any extra to begin with! He looks pretty frail so we have been offering him everything. I have had to set a timer for every 5 minutes and when it goes off he knows he has to take a sip of liquid. Man does it save a lot of arguing and whining. The food part has not been as easy. Since surgery he has hardly eaten anything. I offer him ice cream, pudding, popsicles; you name it all through the day. When he has fully recovered I am going to have to load up on high fat foods for him. I don’t think any of us were prepared for how hard this has been. This by far has been the hardest thing I have experienced as a parent. It is no fun to watch your child in so much pain and be able to do nothing for them. We managed to get out of the house for t ball pictures this morning through a lot of tears. After pictures we headed to Target to get him a real watch. A little boy in his class has one so I told him if he wanted one he had to earn it. Each day he has good behavior at school he gets to put a sticker on his chart at home. After he gets 5 stickers he gets a reward. Ever since we started this he has had nothing but great days! The first 5 stickers he got to go to Chuck E Cheese. He only had three stickers, but I told him after his surgery he could get it. Poor kid I think he earned it and some! I am sure hoping he is turning the corner to recovering.

Jackson

We are DONE! We got a late start since they were backed up. We started our day waking at before 6am to get here by 7:30 and they did not even start with him until 11:00. He cleaned his ears and said he did not think he needed another set of tubes (great news). He had left over adenoids so he removed those (a nice way of saying his first Dr did not remove them all) and he took out his tonsils out. Jackson was a brave boy and rode back in a wagon with the anesthesiologist. He made friends with him before hand and sang him the whole super man song on his lap. I will NEVER take either of my kids anywhere, but here. It is like night and day (compared to Katy hospitals). Jackson had some trouble with his breathing when he woke up and high heart rate. He was very upset and it took awhile to calm him, but we are resting in our room right now (he is watching TV). We are in the West tower room 1112 if anyone wants to come see him today. We will hopefully go home in the morning or mid day. Thank you for all the support and prayers, hopefully he is on the mend!

April 14th

Ok I think I got all our immediate family receiving updates.

Tomorrow is Jackson's surgery and I think it just hit me. My nerves are a mess. I know he is in good hands and everything will be fine, but when it is your baby you still worry. It is 8:20 and he is eating Oreo's (big treat for him). So if you think about it say an extra prayer for our family. Surgery is at 9:30 am at Texas Children's and we will spend the night.

So on to my other precious baby. She is such a sweet little thing! This child is always happy! She was up watching Greg's family play rock band at 9:00 Easter Sunday. Greg's Aunt Shellie mentioned her tugging her ear and thought she may have an ear infection. Well two weeks ago she was doing the same thing and the Dr said it was wax. She was not fussy nor running fever so I never thought twice about it. She has also had a runny nose for a few days. Last night I heard this horrible sound and honest to God I thought it was the dog. It was Ava barking! It scared me to death! Today she woke up sounding horse and I knew I had to take her in. She had a couple more "barking" spells and one right in front of the Dr. Poor angel, she has Croup and an ear infection! UGH!!! Could this happen at a worse time?? I have to leave her tomorrow night (for the first time) and I just stopped nursing two weeks ago. Talk about feeling guilty!!! My Dr assured me the two DO NOT go hand in hand. You would never know this baby was sick as stinking cute as she looked!

Wed it is

So the Cardiolosit said if they diverticulum gets bigger it could rupture the chamber. We are going to keep a close eye on it and NOT worry right now! We will be at Texas Children's to have his tonsils out Wed and spend the night. Thanks for keeping us in your thoughts.

8 Months

Where does the time go? I can't believe it has been 8 months already! I don't really have anything new to tell. Ava is trying so hard to crawl, but just can't quite get it. No teeth yet either, but the girl can scarf down a pancake in no time. You would be surprised the things she can gum. Life is pretty fast paced over here and we are enjoying every minute of it.

Good News

I spoke to the Cardiologist tonight. He called me and answered my questions. The diverticulum is not new. It was on the first echo a year and a half ago. They are only able to see 95% on the echo and this was just hard to see. An extra set of eyes picked it up and gave us an answer to what is going on. This is completely separate from his innocent murmur. We will monitor it and make sure the diverticulum does not get any bigger. I am going to ask him what happens if it does get bigger I just did not think of that when I spoke to him. He is going to have the chief on the echo lab look at this and if she feels any other further testing is done then he will call us. If not we will have another echo in 6 months to a year. He said this will not affect Jackson surgery next week to have his tonsils out and if it was his son he would still have it done. I have full confidence we are with the very best people at Texas Children's. Our Dr is well known, highly respected, a professor, and on the Board of American pediatrics (he is damn good). I also have 100% confidence that God has a plan and he will take care of my precious little boy.

UPDATE

Some of you have not been receiving my email updates. I added some who wanted them and when I did some were removed. I can only have 10 people to update. I am removing this feature completely so no one has hurt feelings. Please check back at your leasure for updates or feel free to call us.

hamiltonhomeof4.blogspot.com

281-660-1634 cell
281-712-1820 home

WOW

I spoke to soon!! The Cardiologist just called me at home. They have had people looking at Jackson's echo all day long. He is such a rare case. They have found a pocket (Diverticulum) of blood. He will have to be monitored every 6 months and if it is bigger next 6 months then we will have to do a MRI. This is going to make me a nervous wreck during his surgery next week! He went from his blood flows different and it is fine too he has a heart defect that will have to be monitored. Prayers PLEASE~

Echo

Walking in to Texas Children’s today was so surreal. As I looked around at all the visibly sick kids my gut felt like it was being pulled out. A couple times I had to take deep breaths to keep from crying. My heart aches for those families.

Jackson did great for his echo. He politely looked at the tech and said, “are you going to get my shirt all dirty”. He laid perfectly still watching cartoons the whole time after she assured him she would not get his shirt dirty. She made me very nervous after she kept going back to the same spot and told me she would be right back. She came back in and said she would have to do a little more. After she was done they did x rays which they did not do last time. Once again my gut felt like it was being ripped out. I was very nervous! When I saw the Dr, he explained things in detail. I wish I could show the picture he showed me because it made so much since. The chambers to a heart have two sides, one if flat, and the other is jagged. Both sides of the chambers to Jackson heart are jagged. One side is so jagged it has a big dip. It does not go all the way through like a hole in the heart. The big dip is causing his blood to circle and cause the swooshing noise (the murmur). He said he had a second opinion on the echo just to be safe. Both tecs and the Dr felt confident saying that all functions of his heart are working perfectly normal. He just has a very unique situation. His blood does not flow the same as mine and yours, but is causing no complications. So what a relief! This may never correct itself, but we have no reason to worry! Thanks you for all your thoughts, prayers, emails, phone calls, etc. We are so blessed with a healthy little boy and wonderful friends and family to support us.

Belly Laughs

It does not get any better than hearing your baby's first belly chuckle!! Tonight Ava graduated to her big girl bath seat. Jackson was so excited to get to take a bath with Ava. Who knew she would think it was so funny! We got in all on video and when I figure out how to get it on here I will post. She was laughing so hard and it was adorable!!

Go Yankees!

Today was a big day; it was the first tball game of the season. It was more like herd ball. There were several coaches and parents on the field guiding the kids in the right direction. Over all I think it went well. Jackson participated 100% of the time which is HUGE. He cried about 40%, but he did it! He loves to bat (and is very good), likes to run, and hates out field. He does not understand why he can not catch the ball every single time. All the kids run for the ball and if someone gets to it before him, he falls apart. It was a lot for the little one’s to take in. I mean really a new field, new players, screaming fans from the side line, etc. He is going to play summer ball too so hopefully each season will get better! I think he is going to pretty good once he gets the hang of it. He was the only two year old on the team when we started. He missed the cut off by 19 days and the only reason he got to play is because I got them to change his age in the system at the Y. I think we will for sure keep him at the Y one more full year before starting pony league. That was he can be the oldest one the team instead of the youngest!

Big thanks to Granny, Papa, and Uncle Josh for coming out to make him feel special and watch his first game!