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.
Thursday, March 28, 2013
Tuesday, March 26, 2013
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.
Sunday, March 17, 2013
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.
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.
Wednesday, March 13, 2013
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.
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.
Subscribe to:
Posts (Atom)