Thursday, February 25, 2010

Complicated!

9

Today was a hard day for me, i don't think i have felt like crying more than today in a while! I feel like things just keep piling up and up and now I'm crumbling.

*This morning as i was changing Jesus's gauze it looked red and swollen (granulation tissue) i just feel like i could have done something to make him not go threw this, then i started feeling like i wish i could just be his mom and he didn't need surgery, and i could just enjoy his first year of life without thinking of what we can be missing. That lead to me feeling guilty about having those feelings because i am blessed to have him and i should not have those feelings!

*He started having diarrhea today, at first it was just some i didn't think anything of it and as the day progressed he had more and more (in differant diapers) until in the 5th one he was laying on a puddle of diarrhea. i cleaned him up quickly and thought wow i did not see that coming! i thought it was just lose stool, (the thing is Jesus has constipation not diarrhea) how could i have not noticed that he was going threw something, so once again i call the nurse line and after talking to the doctor she says that we are just going to give it a few days but that he may have dumping syndrome! I'm just hoping its nothing serious.

*I have to then go on and listen to someone (not going to say who for privacy reasons) tell me that another mom was really happy that her child did not have the same syndrome as my son. Well my son does have it and i don't want to hear how happy other parents are or are not happy about what my son has!

*I feel i need a break but i don't want to have to need a break i want to just be able to handle everything on my own!

Wednesday, February 24, 2010

Playing

5

Esmeralda enjoys making Jesus laugh, here are some pics for you all to enjoy!:)


he is waiting for her.


Jesus can be very impatient so this is his way of telling her to hurry up =)


such a simple act of attention from her


=)

Monday, February 22, 2010

Binky

4

Jesus has never been much of a binky lover. when he was little we bought every kind we found to try and see if we could get him to like one. but none worked he hated every single one we gave him. Recently because of his g-tube we have found him sucking on his blanket. he will sometime cry and cry and we are thinking its that he misses his bottle, so we figured lets see if he will take a binky well nope he still wont he doesn't hate it but he will not suck on it either instead he does this!=)


Any ideas on how to help him get threw not being able to have his bottle?

Saturday, February 20, 2010

Not Three Hands

1

Today while we sat down for dinner, our daughter kept asking for someone to help her with something in her room. We weren't sure what she wanted and was a little to far away to understand what she was even saying, so my husband got up to go see what she needed.

Jesus: What's up?
Esmeralda: I need help.
Jesus: With what?
Esmeralda: Can you get my pony's tails? (in reference to my little ponies)
Jesus: You get it
Esmeralda: I can't, i have my stuff in this hand (shows her left hand with accessories)
Jesus: What about your other hand?
Esmeralda: I'm moving things, does it look like i have three hands?? NOO! Then help me.
Jesus then proceeds to help her.

It amazes me how much she has grown, and how even at 3 years old she has come up with her own way of thinking!

Friday, February 19, 2010

Emily's Smile Boxes

1

http://www.emilyssmileboxes.com/

Today we recived 2 boxes that brought smiles to my kids faces and tears of joy to mine! Thank you Emily!=)



SMILING EVEN BEFORE SHE OPENED IT!:)








Wednesday, February 17, 2010

First Feeding

4

Jesus had his G-tube and nissen wrap done on Friday, during the stay at the hospital Jesus was really grumpy and tiered but i don't blame him, I also got to learn how to use the pump and how to feed him, and by the time we left i was doing everything on my own.

We finally got to come home today. During our 3 hour drive Jesus was the happiest i have seen him in 5 days he was actually cooing a lot something i have never heard him do it was so adorable i wish i would have had my video camera with me.

Once we got home it was time for him to eat, So i very confidently hooked him up and started his pump, and put him on his bouncer so i could go clean up and he wouldn't get all tangled. I was thinking yay I'm doing good,i can really do this, until
my husband says "its not even feeding him"
me: "what do you mean its not feeding him did i not start it?"
Him: "yes you did but its not hooked in his stomach"

That's when i understood he was all wet! how could it have unhooked I'm sure i put it on right. well i choose to believe that it was his wiggling that caused it to come undone He was just so happy to be home he kept kicking and moving to try and get his his toys. that's how it happened.

with that in my mind i went to try again i put more milk in the bag and made sure it was on right and tried for my second try everything seemed to be flowing good, well not really because about half way threw the feeding the pump started saying no food i thought no food really i put enough, yes i had put enough but the top wasn't closed right and half of it had spilled in the backpack. this time i chose to believe that it was my husbands fault he was the one that closed it after all.

The good thing is that the pump keeps track of how much it has feed Jesus so i didn't over feed him, so once again i put more milk made sure it was all set up right i even put it on the iv pole and said OK lets try one more time, but the pump kept telling me no flow out, so i tried all my steps and it would not work (very frustrating) what i forgot to do was unclamp the main tubing. this time i couldn't deny it, it was me!

How i was doing it all at the hospital, and my first feed at home i mess it all up I'm not sure But i am happy to say that he is eating right now and so far so good!:)

Wednesday, February 10, 2010

Another milestone

5

Jesus has gone threw lots of testing and surgery and just things that i thought would stop him from growing and doing new things. but he just amazes me more each day!



he was able to go from just nibbling his bottle to drinking while holding it when he wanted to drink!



He is also rolling all over the floor to get to toys that he wants its so amazing to see him do so much!

Sunday, February 7, 2010

thinking positive

3

As you all know this year has been tough on our family. I don't feel like i could have gone threw any of it without every ones support, and prayers. My house is still a mess (because i haven't been home to clean it), Jesus still needs to have surgery done(feb.12)he will get the G-tube, and the Nissen wrap. The MRI was postponed because we don't want him going threw so much anaesthesia in such a short period of time. He will also be having a Second sleep study in about 6 weeks.
However we are feeling less stressed, Jesus does have a bed to sleep in, and toys to enjoy i will try posting pics of his room as soon as things aren't so busy. I have my sister to take care of my daughter when i need to be at the hospital with Jesus. I have also gotten to talk by phone and by email to amazing moms who have gone threw the same surgery and have given me so much support and information that i feel like i can do this. It will be hard but i can do it because i have all of you to help me! THANK YOU!:)

Monday, February 1, 2010

Update on Jesus

5

Hi, this is Brandi (Nathan's mom) and I'm updating on Jesus for Angelica.

On January 8th, Jesus had surgery to fix a couple of hernias, a chordee, and an orchiopexi was successfully performed. He did well through the surgery but had a hard time coming out of the anesthesia and breathing on his own. He ended up being admitted for a couple of days.

Jesus has spent the majority of the last week in the hospital undergoing several tests and to follow up on his apnea.

One of the first tests last week was an attempt to place a ph probe down his nose into his esophagus to determine the rate and severity of Jesus' reflux. Unfortunately the nurses were unable to get the probe through his sinuses and caused him to bleed and turn purple. Needless to say, it was a lot of discomfort, but no results.

The next day he had a CAT scan that revealed some scarring in his lungs as well as the beginning stages of lung disease.

Following that test, he had an edoscopy to find out what was blocking his airway and causing his apnea. His tonsils were normal size but his adenoids were blocking 50% of his airway. An emergency adenectomy was done that day.

Today, Jesus had a swallow study that revealed he is aspirating. The doctors have recommended that a g-tube be placed in order to protect his lungs. Tomorrow they will attempt another ph probe to determine if his reflux is bad enough to have a Nissen wrap placed at the same time as the g-tube.

On Wednesday he will undergo an upper GI to rule out malrotation of the intestines.

There has been no surgery date set due to the remainder of tests that need to be done.

He is also scheduled for an MRI on Feb. 8th to check for a tethered cord.

This little guy and his family have been through so much in the past month. They are holding up amazingly well and are thankful to everyone who has helped out. In fact, Jesus got to come home and sleep in his newly furnished and decorated room. Angelica said that he loves it and so do they. This beautiful family could really use your continuous thoughts, prayers, and well wishes as there is much more ahead of them.