Genetic appointment

Yesterday the baby had her genetic appointment and we got the results of her microassay that was taken right after she was born.  She had a 50% of getting either of our bad chromosomes, 25% of getting both, and 25% of getting neither.  Unfortunately she fell into the 25% chance of inheriting both. They still have my duplication as listed as unknown significance (probably because I - and now dd2 - may be the only people with it) so the doctor doesn't think it is important, but dh's chromosome 6 deletion is now listed as pathological known to cause development delay and other health problems.  Of course neither dh nor his mother like to believe this despite me showing them the literature.  She thinks since there isn't a nice sounding "syndrome" name like our nephew has then it means nothing.  That upsets me because it basically makes like all the therapy I have been getting for dd1 and dd2 medical problems seem like nothing.  I understand that she doesn't want to admit that there is a problem from her side of the family, but the fact is there is and denying that the deletion doesn't cause problems doesn't help anything.  I mean the baby isn't even 10 weeks old yet and has already went through one surgery with likely many more to follow.  She is also already developmentally delayed, though I don't know if it is related to the heart failure or the deletion.  Anyways I am not taking any chances and have left a message with EI to make an appointment to get her evaluated.  The genetisit also wants her to have a renal u/s since enlarged kidneys is common with the deletion.  DD1 had that problem, though it was picked up at the anatomy scan.  I think back to the anatomy scan I had with this pregnancy and all I recall is the doctor's words that she is perfect, there is nothing wrong.  I can't believe that just 6 months later my baby was in CHF and undergoing cardiac surgery.

Day after surgery

We were lucky to avoid the ICU and be sent straight to the floor and I found out the ICU nurse who gave the tour was wrong. You can use cellphones in the room, just not use it to make calls. So I was relieved since I brought no other firm of entertainment. I did break the no cell call rule though by accident once because I forgot and luckily because I need to catch dh quickly. He had just left when I remembered we didn't take the bottle stuff out if the car.

The only bad thing is that the rooms are shared. When we first got in the room there was no one else so I was hoping it would stay that way, but unfortunately a few hours later I say that a name got placed on the door and by evening another baby got put in here. Of course the whole family was there when it arrived and the mother doesn't even speak English. I guess that is both good and bad. I won't be talking to her and I can talk about her and she won't know. I couldn't wait until 8pm when visiting hours ended so the rest of them would leave. However it just got worse at night. The pull out chair they make people sleep on is horrible (seriously I think the tile floor would have been better), but the worst was the freaking baby beside us that wouldn't stop crying and babbling. It is one thing listening to your baby, but another persons. I was lucky I was dead tired from not sleeping for 2 nights or else I wouldn't get a wink of sleep. I am lucky Chloe is a quiet baby. I would die if I had that kid for a child. And she wasn't even young like Chloe is, but 7 months old. By that age a baby should be sleeping through the night but no it was crying at 12, 3, 5 in the morning and maybe even more but I was to tired to notice.

Surgery day

Yesterday we had a full day of tests done for surgery. They said it would take 6-8 hrs but we were done after 5, which was good because I was dead tired after dd1 stayed up all night and caused me not to get any sleep.

Unfortunately I couldn't get much sleep last night because we had to be here by 6.
They took her to the OR at 7:30 so now we just wait.

It has only been 10 minutes so far and I seriously want to kill the family sitting beside me. Here I am worried my baby will die and this family is not only acting like this is a social get together I also have to listen to the grandma talk in baby talk language showing pics and saying how cute so and so is. At first I thought they were talking about their pet and I was wondering why they would be going on and on about their pet. Then the young mother goes on and on about a baby Einstein toy this kid liked that was in the waiting room and then the grandma went on (in her baby talk language) of how she had to get this kid this toy and where to buy it and oh look it is at bed bath and beyond oh good so then I can use the 20% off coupon and then when she found out it was only $10 then she complained because it was too cheap. Seriously this conversation went on for 15 minutes if them repeating these same things over and over again. I can understand maybe their kid was going for some minor surgery but many of the families here likely aren't

We have a date

DD2 is having her surgery this Thursday for her PDA.  We have to be up in Boston for 7:30am the day before for an intensive 6-8 hours of testing.  That means getting on the road at 5, and since they are going to sedate her that morning for the echo I have to be up and feed her at 3 - since she can't eat after 3:30am.  Can you say I will be tired that day!  Since I refuse to go home that afternoon during rushhour only to return the next morning we have decided to stay in town that night.  Not sure yet if it will be at dh's uncle's place or a hotel.  Then Thursday-Saturday I will stay with her in the ICU.

I am looking forward to her finally getting fixed.  Everyday she just gets worse.  A couple of weeks ago she started coughing badly despite being on the lasix and now in the past 2 days she has been feeding really poorly - only drinking like 2oz at a time instead of her normal 3.  Yesterday was her 2 month birthday so it really concerns me how small she is.  She likely went from being 30% on the chart at birth to now not even being on the chart. 

It is hard to realize that all I wanted was for her to be born so she would be safe and it was this act of being born that caused her to go into heart failure :(

Cardiology appt #2 (7 weeks old)

Todays appt was pretty low key.  She gained 1/2 lb from 2 weeks ago and didn't grow any length so not sure how effective the added calories is.  She now has a cough, but the doctor didn't seem too concerned.  She is already getting the proper dose of lasix and with the slow growth the doctor doesn't think she will outgrow it anytime soon. 

Still haven't heard from Boston about when she can have surgery.  The doctor said he has been hoarding them everyday, but that the stuff has been sitting in the mail room for the last number of days and no one has transported it from the basement to the cardiology department on the 7th floor.

He made another followup in a month's time, but hopefully she will be going to Boston before that.  He said he originally wanted her to be done in April, and well who knows if that will happen now that April is half over.

We were also warned about keeping her out of public since if she ever got sick it could be very bad since she already breathes fast as is.  So looks like it will be a long time before we can go back to church or other public places.