Sorry to keep you waiting

Sorry its been so long since I last posted about Alena. She's home now and doing really well, so i'll go ahead and tell her hospital story. They put in a homograph of the pulmonary valve and stitched closed her hole and put a stitch in her tricuspid valve which is leaky.

We went into the hospital and sat around for the deemed length of time that you have to sit around in a hospital then they gave her a little oral versed so that she would get sleepy and the transition to the surgery room would be alot easier. She got really loopy and started giggling and acting like a little drunkard. Surgery itself lasted 8.5 hours which was a bit longer then expected (6 hrs), she was on bypass for two hours.

When she got out of surgery she looked so much better then she ever has after other surgeries. An odd side effect of the homograph is that it gives you horrible breath. That night they started letting off on the sedative drugs but with toddlers they are either up or down. Alena was up constantly and she was still on the ventilator so she kept thrashing and arching her back which probably only hurt herself more. We had to hold her down but during one of her quiet times we were giving her a sponge bath and she ended up jerking and pulling the ventilator tube out of her mouth by accident and thank goodness she was ready to be extibated because she could have died by not breathing on her own. She was just fine though and the reason why she had been thrashing all night is because they couldnt find a pain medication that would work for her. Finally in the morning around 7 am they put her on something called Dex and that worked for her. She passed out for the next day or so and then woke up for a day. She was doing so well that she tried to climb out of the bed several times and trying to stand up by herself just two days after surgery. On the fourth day they discharged us and we came home. They also did a heart echo on the last day and discovered that the pulmonary valve is leaking but its supposed to, the hole is sealed nicely but that the tricuspid valve is still leaking but not enough to require any further intervention.

All in all it was actually not too horrible. We are glad to be home now and resuming normal toddler activities such as tantrums over tv time and picky eating.

False Alarm and borrowed breastmilk.

So last night we got home pretty late after going to the Cloth diapering store (a Baby connection) and Alena had already fallen asleep in the car so we brought her in, got her dressed for bed and laid her down in her crib without doing anything else since she was so tired and has not been sleeping well lately. She woke up about 11 pm and was sooo hot to the touch and couldn't breath through her nose. We thought oh boy... she's got a cold seeing as George (husband) just got over a cold. We tried so hard to get her to not catch his cold aka limited touching and holding, no kissing, and tons of sanitizer. We thought we had it good seeing as I didnt even get the cold. So we gave her her allergy medicine (that we had forgotten to give her before we put her down for bed) and gave her some ibprofen. She slept till morning and she's fine now so we think its just that she had insane allergies (like mommy) since we didnt give her her allergy medicine.

On another note

Our friend Jamie is breastfeeding and was so generous as to let us have some breastmilk for Alena to have before her surgery (about a week before up till the surgery) and perhaps right after the surgery to help boost her immune system so she'd recover faster from the surgery. I'm so thankful to have friends like Jamie. The unfortunate thing is getting a toddler to drink the milk! She almost likes it, she switches between liking it and gulping it down and not wanting it at all after the first sip. So far we have gotten 18 oz down her little gullet since saturday so thats a start. My goal for today is to get two servings since she didnt have any yesterday.

I'm also packing for her surgery on friday, and goodness I feel like we are going on vacation except I dont feel excited.

My first post

Ok so background on me and my family. I'm 21 years old and my husband is 39, odd i know but it works for us. We have a two and a half year old daughter who has Down syndrome and a heart condition called Tetralogy of Fallot with a few other tag on heart conditions and lots of her own "issues". I like fishtanks crocheting music and of course learning to mother my child.