Heart kiddos

This has been the hardest year I have ever dealt with. Giving birth to my boy seeing him for only a few seconds before he was taken away to be given life saving medicines. to be brought back to my room hours later in a portable incubator. Taken away and not seen again until the next day. Having open heart surgery at 7 days old and finally coming home shortly before Easter. Its been hard, but there are those out there who have had it harder! Aiden is overall doing well he is gaining weight just slowly he had his weight checked this morning and he's at 11 pounds 10 ounces almost to the 12 pound mark! Sure some of the clothes he wears is still newborn but that's ok! he had a rough start.

I was on Intermountain Healing Hearts earlier on facebook (group of heart moms who go to PCMC) and I realize others have it a lot harder. Two of them are in desperate need of a new heart. I can't imagine having to wait for another persons child to die in order for mine to live.

One is Matthew  and the other little Kylie. Who is showing the final stages of heart failure. my heart goes out to those two little guys and there families.. I simply can't imagine and I don't want to imagine what there families are going through!

As I've said Aiden was hard enough but it can be so much harder then him and I feel very lucky in that aspect!

Wordless Wednesday

Aiden and his blanket

I realize I had yet to take any pictures of my cutie with the blanket I made him! Well I took a few :).

Weight gain

Aiden's weight gain has been very slow going, which is normal for a heart baby but still its a problem. He is now in the 2 percentile for weight and height, but 17 percentile for head size.  The image below is the first thing of cloths I have found that no longer fits him! Yes its a hat like stated above his head is bigger then the rest of him... both of my boys are like that.

Everyday I feel so stressed out about the amount of ounces he is drinking and stress a bit if it goes down an ounce fro the day before. I'm always thinking and worrying that the feeding tube will come back! His pediatrician does not want that to happen and has decided to have me try upping his calorie intake by adding micro-lipids to his bottle 1 mL per ounce.  The only place that sold this was primaries so I took the drive up there with both boys to buy the stuff.

Now part of the problem with his calorie intake is the fact that we have to add stuff to the milk to thicken it it in turn dilutes the calories he is getting.  Stuff like simply thick adds thickens but no calories!

HEres hoping it works becasue i don't want that damn tube to come back!

Guilt.

I work because I have to not because I want to. Do I feel guilty sometimes that I have to work and can't be with my boys more? Of course I do.  I want to be with my boys! But life doesn't always work the way you want it to. I am tired of hearing the whole debate of being a working mom or a stay at home mom. I wish I could be a stay at home mom like my mom she was always there for us, she still is. I wish I could be there for them at every moment of there lives to not miss some of there firsts. I missed quiet a few of Aiden's because of his first few weeks in the hospital. I mean it was a week before I even got to see his eyes!

4 months

Stats: As  the 11th my little guy was 11 pounds 3 ounces.
Diapers: Still using size 1.

Clothes:  0-3 month clothes.

Wordless Wednesday

4th of July fun

Figured I would do a quick update. Aiden is doing really well without the feeding tube. Last Monday the therapist came and checked on him and weighed him he had gained 2 ounces that week. She said that was really good becasue normally babies loose weight after having the tube pulled because things feel differently to them so yay for my little guy. She said she is going to work with him in two weeks and that cold be it! Which yes that's another big step for my little guy!


On the 4th of July we went to the park and had fun. It was a trail run for Aiden he hasn't really been around to many places yet he did OK but got hot he really doesn't like heat! Like today we have a little humidity so my house is hotter then normal and hes one grumpy guy! we mainly went to the park/ mini carnival for Connor he rode two rides and a horse. He spent the majority of the time petting his horse it was very cute! he seemed to enjoy it a lot more then the other kids.

Connor petting on the horse