cardiology appt

So today the baby had her follow up appt with the cardiologist after being diagnosised with a PDA and valve regurge at 2 days of age last month.  I have been patiently waiting for this appt to finally get some answers to the symptoms she has been having and get a game plan on what needs to be done.  I was hoping that we could wait to do the cathetization surgery when she got to be a couple years of age, but unfortunately it turns out her PDA is a lot worse than was first thought and the only cure is open heart surgery where they can physically tie off the vessel.  The cardiologist own words were this is the largest PDA he has seen (great) and she is in the early stage of heart failure.  This is the reason for her increased breathing and why her pedi have been hearing crackles on her lung fields.  Unfortunately the surgery is only done in Boston so we have to wait now for the records to be sent and for they to call for an appt, but it is looking like it will be done some time in the next month. 
In the mean time she is going to start on lasix to help the breathing and I have to increase the calorie content of her milk to a 24 calorie/oz diet.  She weighed in at 7lb 9oz today and 20.5 inches long so it looks like she is gaining 0.5 oz or less each day. 

I am trying to remain calm, but it is hard.  I know that she needs to have the surgery to get better, but it is so hard to agree to have your newborn baby have such major surgery.  I also worry about what this means for our family and their future kids.  I know very likely she has this because of dh (we got very lucky with dd) and if this is true than what is the chance that their kids may end up having PDAs too and needing surgery as a baby. 

pp appt

So today I had my pp appt.  Was suppose to go in 2 weeks, but on Thursday they called saying the doctor was going to be away that day and they were rescheduling me for this Thursday.  Only problem is Thursday is the baby's cardiology appt and there is no way I want to be out all day with the baby and dh.  It then took until yesterday until I could finally reach someone to talk to about this.  The woman on the phone then said that there is no other appts available until May 13.  WTF, I gave birth Feb 20.  She then asked if I wanted to speak to her supervisor which I said ya, I mean if I have to wait until May 13, I might not as well even go to the appt.  After leaving a message and waiting for a call back the supervisor said there is a cancelation for tomorrow if I want.  I really didn't want to go out this morning since it was prime time to get work done around the house while dd was in school, but had no choice so I took the appt.  The only reason why I even care to go to the appt is because the insurance will send me a $10 gift card (of course after doing the math and figuring out that it costs $20 in gas and $4 in parking and 2 hours of time that $10 gift card doesn't sound as good anymore) and to find out if they determined a cause for the bleeding.  I asked the doctor about the placenta and she said it was small (10% in size), the cord was off to the side, and there were some clots, but overall nothing really significant or noteworthy in case I ever do get pregnant again.  So there you have it, still really no answers, of course it does make me surprised the baby wasn't iugr.

Party fail

Last year on my dd's birthday party I found out our ET the next day was cancelled because all our embryos had died.  I then had to put on a happy face while entertaining the guests.

This year we finally have our baby here in our arms, but because her birth is close to dd's birthday I pushed out her party a couple of weeks.  So because Easter is early this year that meant having the party today - St Patrick day.  We spent over a hundred dollars on food and party supplies and sent out 7 invitees to family and friends.  Dh's cousin and aunt/uncle refused because it is St Patrick day and a parade was more important.  His brother's wife had a test today so his brother claimed he could not bring their 2 kids by himself.  My one friend wanted to come, but then cancelled this morning because her husband was being released from the hospital today and he didn't want to wait a couple extra hours so she and the kids could come to the party.  My other friend was suppose to come with her son, but was said she was going to be late.  Well guess she must have changed her mind because she wasn't only late, but never came period.  Not to mention this friend owes me her little tyke playset that I brought off of her last June.  The only 2 people who did show up were dh's parents, and even that almost didn't happen thanks to a stupid mathron happening today and the city closed down all the main streets.  I must say I really hate St Patrick day now.

To make matters worse is MIL confirmed the baby does have dh's messed up nose.  When she was born I thought her nose looked funny, but MIL reassured me it was ok and I  also read that newborn noses can look flattened.  Well now she tells me she can see it in the pictures we just did.  This confirms dh's nose problem wasn't just a fluke, but is a genetic condition and now the baby is going to face multiple surgeries to likelyt correct the defect, not to mention it can likely be passed on to future generations.  This along with the PDA pretty much confirms to me that she has the same chromosome 6 deletion.  We will find out for sure next month.  I guess we got lucky with dd1 that even though she too has the deletion she didn't have to face all these physical problems.

Due Date

Today is my due date.  Hard to believe it has only been 3 weeks since giving birth.  It feels like an eternally since being pregnant.  Maybe it is because the pregnancy went by so fast, or that I was so scared, or that it was my last, but it feels like those 8 months hardly even happened.

I am enjoying being on bedrest now, though I still have a few more weeks before I can lift things again.  I have recovered very well from the surgery, my feet are no longer swollen and I am only 10lb left to lose until I am back to prepregnancy weight, though it may be longer before my pants fit good again.

It is also such a nice relief to have such an easy baby that only eats and sleeps and never spits up like dd1 did.  Of course it would be easier if she would bf, since I am still doing the bottle feeding and pumping.  Of course part of it is my fault now for not even attempting to put her to breast, but I am just too tired to add in another step to the process. 

Tomorrow we are going to get pictures done - 3 year birthday pictures for dd1 and newborn pics of the baby, as well as Easter pics of the 2 of them.  Hopefully things go pretty smoothly, but since how the past year has gone with dd1, I doubt it.

Oh and the baby is now over 7lb and as of last week has grown 1/4 inch in length.  We are still wearing preemie clothes though and some smaller newborn stuff.  At least she is getting use out of the clothes.

First day with 2 kids

So MIL dropped dd off this morning after having her for the past week.  I soon realized that things are going to be harder than I thought.  DD immediately got jealous of the baby and wanted to feed her and when she was refused she starts this crying fit on the couch.  It wasn't a tantrum cry, but a really "hurt my feelings" cry.  So I decided to have her sit down and get a clean bottle to help feed the baby.  Then she took one of her toys and almost hit the baby in the head with it trying to show me.  Of course this started the crying fit again.  Then when dh was trying to get her ready for school and I needed to feed the baby again, she wanted to sit on my lap as well.

I can't really blame her for acting this way.  None of it was done to be mean and most of the time she is trying to help, though it doesn't end up helping at all.  Also with not seeing me for a week it must be hard for her.  I really do feel bad for all the changes she is going through right now.  Today she had her last day of toddler group.  Next Tuesday she turns 3 so she will no longer be able to go to her class that she has been going to since she was 17 months and will start preschool.  So a new school, new teachers, and new kids.  Then with all the changes at home, it is a lot for a little girl that is already having issues.

Luckily the baby has been pretty easy so far, though I am not doing well with the lack of sleep and this pumping business is starting to take it toll.  Not to mention my stomach issues continue to happen so I have to force myself to eat and then all morning long today I was in and out of the bathroom having diarrhea.  I guess buying the milk of magnesium wasn't a good idea Sunday night.
I was going to call the doctors, but looked it up and I guess GI issues can happen post csection so I am hoping it is just my body trying to work itself out then me actually having caught a bug.

Luckily the incision pain is mostly gone, though my feet is making up for that.  My poor feet, ankles, legs, and even knees are so swollen it hurts to do anything.

Going home

Today is discharge day.  I am actually looking forward to going home and hopefully not seeing another hospital room for a long time.  Before I became a mother I was never admitted or stayed overnight in a hospital, now it seems like a 2nd home some times, this was especially true last pregnancy where I spent 3 weeks on hospital bedrest.  I am happy this time though that the baby will be coming home with me and not staying in the nicu.

BF has gotten better, but it is still not going perfect and I am still pumping and bottle feeding every 3 hours which if things don't change, I can't see bf lasting long term.  DD isn't expected home until Tuesday and then she will be at school Tuesday afternoon so I will have a couple of days with just the baby to contend too.

As for her health, the heart murmur turned out to be due to a PDA.  It is funny that my premature dd doesn't have a PDA, but my full-term baby does.  Of course this raises the questions in us that she may have inherited dh's chromosome problems.  A genetisit came by on Friday morning because of our history and they took blood to run the microassay so we should find out in 3-4 weeks if there is anything abnormal in terms of chromosome makeup for the baby.  We also have to f/u with the cardologist in a month's time too because of the PDA.  He suggested since she wasn't premature that they wait a few years before correcting the PDA and do it by femoral cathetization.  When dh was 2, the only option was open heart surgery which had a 50% survival, so I am glad pediatic cardiology has come a long way since the 70s.  Of course it does worry me waiting so long to correct the problem.  By the time dh was 2, he was turning blue and collapsing.  I don't want the baby to get to that stage.  I think that isn't another concern of mine when feeding her, that I don't want to try and stress her too much and bf isn't easy.

She is here

My c-section was suppose to be at 1:30 yesterday, but got pushed back until 3 thanks to an emergency (wasn't very pleased since I had been off food and drink from 10pm the night before). The start of surgery wasn't very good - I got very sick when laid on my back probably from the uterus preventing blood to return to my heart. I never experienced this last time, maybe because I was only 31 weeks then, I don't know. Anyways, I had trouble breathing and got very nauseous and ended up spitting up a few times and blacking out for probably the first 5 minutes of surgery. I don't know - I woke up and heard them talking about how my uterus looked so they must have already opened my abdomen.

After that things went alright. It took about 10 minutes of tugging to get the baby out. I don't recall that really being a problem with my last c-section either. The good part was when they did get her out the warming bed was directly to the left of us so I got to watch them examine her while being sewed up - with dd's birth the newborn area was on the other side of the OR behind the sheet so I didn't get to see anything.  The baby weighed 6lb 10oz and is 19 inches long so not too bad for being 3 weeks early. She had some trouble breathing at first, but they said it was due to the c-section. Her apnea scores were 2, 8, and 9.

I spent 2.5 hours in recovery which was pretty easy except for the constant belly checks - the nurse doing me seemed to really like to press down as hard as she could on my belly button (I hate having my belly button area touched anyhow) and even though she was only suppose to check every 15 minutes, it seemed like she was checking every 5.

Got a room at 7 last night and was finally able to drink, but by 8:30 I had massive vomiting episode that came out of no where so I was off drink again until midnight and then had to take things easy. Of course this meant that today my kidneys were hardly working since not having any liquids for over a day so instead of them pulling my u-cath at 12 hours it was kept in until almost 24 hours.

She is a very quiet baby and likes to sleep a lot. Unfortunately this means she is not a good nurser - and even refuses to open her mouth and try and suck. I thought there was problem at first until I finally tried a bottle and after much effort she finally picked up a suck, but bf isn't happening right now so that means I have to pump if I have any hopes to ever take her to the breast. I was really hoping for an easy bf experience this time since I didn't have a good experience with dd since she was so premature. I thought this time with being full-term would fix things, but I guess she is still too immature in that department.

She does have a heart murmur and may be developing jaundice (her bilirubin is still fine today, but I read that it peaks between 3-5 days) so they are going to monitor her over the next few days for these things. She also have webbed toes on both feet. The doctor said it may be nothing, but can also be seen in some genetic syndrome. I don't know why they always have to find things wrong so now I am worried about this. I know it is best to pick up on these things now, just wish I could have a perfect healthy baby.