We had a day full of appointments yesterday. The morning started off with an ultrasound. Just going up the elevator into the Maternal Fetal Medicine suite gets my stomach all in knots. And then you have to sit in the waiting room while all of the other "eager" parents wait anxiously to get a glimpse of their unborn child. Kevin and I just sit in the waiting room praying that we won't get bad news, hoping that everything will be ok, and wondering what each appointment will bring. Both of us have actually started to dread these appointments (although I will say that I still love seeing him everytime!).
So, we were finally called into the room and we were lucky to have a nice technician, who actually talked to us throughout the scan. We pretty much know everything they are looking at now, and we both try to analyze the scans as they are being performed. Something we shouldn't do, but its hard not to. At any rate, we were happy to learn that overall, things are pretty much status quo. Everyone (Kevin included) keeps telling me not to be fixated on numbers, so I'll just say that the ventricles were just about the same. Austin's head did get bigger and is now measuring about 4 weeks ahead of what it should be. And although I'm certainly not a doctor, one would assume that with the ventricle sizes staying the same, and the head getting bigger, it would lead one to believe that more brain is growing! So, we were happy to hear that. Doctor reported that there is still a "reassuring" amount of cerebral mantle as well (the thick layer between the brain and the skull) which is good.
After the ultrasound, we went across the street to the hospital with the genetic counselor to meet with one of the neonatologists and take a tour of the NICU. The neonatologist was simply wonderful. Great personality, very personable, able to answer all of our questions and offered advice to us. The NICU itself was very nice too...they re-did it two years ago and now all of the babies pretty much have their own rooms. The only downfall was that the NICU is on a different floor than the maternity suite where I'll be, but I was told that as soon as I'm able, I can go up to see Austin as much as I want.
After the tour, we grabbed some lunch before heading back to the hospital for our follow up echocardiogram. This scan seemed to take forever (even though it was faster than last time). As you get further along in your pregnancy, its harder to lay flat on your back and I felt as though I was going to pass out. At any rate, we were happy to hear that again, things stayed the same. The regurgitation is still there, and although it certainly is not common, it is not affecting anything negatively at this point in Austin's heart. So, the cardiologist will most likely just take a look after he's born to make sure that his heart is still working well and there is no backup of fluid anywhere around it. The cardiologist said she didn't see any reason why he would even have the regurgitation and sometimes kids have this and there is no surgical intervention. So it was hopeful to hear that.
And finally I met with my new OB. I was very nervous about this because it is a really big practice and I'm not used to that. I'm used to individualized attention and knowing my doctor. But the doctor I met with was very sweet and explained to me that since I had a lot going on, she would try to keep all of my appointments with her for now, so I have the continuity. She suggested that we try to pin down a time frame of when the latest they would do my c-section would be. She said that it was going to be up to the neurosurgeon and the perinatologists to decide. So, hopefully when I go back in 4 weeks for my next ultrasound, we can get some more concrete answers. It would make sense to me that as soon as Austin's lungs are mature, he should come out so we can begin all the interventions...but of course I don't have the final say, so we'll just wait and see.
Thats about it for now....no more appointments for a few weeks! Whoo hoo. I also want to continue to thank everyone who continues to pray for Austin and our family. The support has been overwhelming and so much appreciated and I am just so thankful for all of you...prayers are way more powerful than medicine and if anyone/thing can keep Austin healthy, it is all of your prayers!!!
Tuesday, February 15, 2011
Say Hello to Austin...
About a month or so ago, my mom told me that she saw a billboard on a highway in NJ that said something about "Austin" with a baby's picture on it. I told her to go back and take a picture of it, but of course the next time she drove on that highway, it was gone. I didn't think too much about it, other than that it was weird and Austin is not a popular name...but nonetheless that was about it. Well over the weekend, I was again told about this billboard, now located in a different town. So, Kevin and I went on a quest last night to find it...and sure enough, there it was...."Say hello to... Austin" with a picture of a cute little baby on it with blonde hair and blue eyes. Nothing else. No advertisement, nothing. Just a billboard with that on it. In fact, we found two billboards in that same town of Austin (one happened to be right down the road from St. Cecilia's church-from a previous post). At any rate, I just think it is very strange. I did google it and found that it appears a bunch of people are asking the question about what the billboard means...and so far the only answer I have found is that it has to do with CBS outdoors and that there are reportedly clues around and they will be announcing who the parents are of Austin soon. If you know what this billboard is all about, I would be very curious to know...here is a pic....
Saturday, February 5, 2011
Pluggin along
Well, I hit 28 weeks yesterday. I feel like this pregnancy is going so slow. I know its because of all of the anxiety and worry that I have. Guess it just makes each day go that much slower. Thank goodness for Jake. He has been so entertaining lately and everyday just surprises me with something new. So I have just put all of my focus and energy into him for now. There is not much to do for Austin but sit and wait and wait and wait. Jake is super excited for his little brother's arrival now. He even kissed Austin (my belly) goodbye today when he was leaving.
I spoke with a doctor last week out of Duke (North Carolina). I had read about her through one of the blogs that I follow and learned that this particular doctor is the only one in the United States performing cord blood infusions on babies with hydrocephalus. You see, the umbilical cord contains many, many stem cells that act as the building blocks for a babies development. If you take the umbilical cord after birth and freeze it (or bank it) and then reintroduce the stem cells to a baby later on, the hope is that these cells can assist in helping to build back some of the necessary cells that a baby/child needs, but was unable to get in utero. So for a hydrocephalus baby like Austin, this type of infusion could be extremely helpful.
At any rate, we spoke in length. She has done 32 infusions on hydrocephalus babies in the past four years. Of course she doesn't have any statistics yet to say that is it helping, but her impression is that it is. She suggests performing the infusions at 1 month of age, 2 months of age and 6 months of age. These procedures are not considered necessary in standard care and therefore not covered by insurance though and will be very expensive. But Kevin and I both decided that we wanted to do it no matter what and looks like we'll just have to take out a loan to pay for it! We don't want to regret not doing something that could end up helping Austin in the long run. There is no risk to Austin, as he really is in essence receiving his own blood cells back and the procedure usually takes about 15-20 minutes through an IV. We just hope and pray that Austin will be strong enough at one month old, to take the 10 hour drive down to North Carolina.
Other than that, nothing really new to report. I go on the 14th for my follow up echocardiogram, another ultrasound, and for an appointment with my new OB. Gonna be a very busy day!!!
I spoke with a doctor last week out of Duke (North Carolina). I had read about her through one of the blogs that I follow and learned that this particular doctor is the only one in the United States performing cord blood infusions on babies with hydrocephalus. You see, the umbilical cord contains many, many stem cells that act as the building blocks for a babies development. If you take the umbilical cord after birth and freeze it (or bank it) and then reintroduce the stem cells to a baby later on, the hope is that these cells can assist in helping to build back some of the necessary cells that a baby/child needs, but was unable to get in utero. So for a hydrocephalus baby like Austin, this type of infusion could be extremely helpful.
At any rate, we spoke in length. She has done 32 infusions on hydrocephalus babies in the past four years. Of course she doesn't have any statistics yet to say that is it helping, but her impression is that it is. She suggests performing the infusions at 1 month of age, 2 months of age and 6 months of age. These procedures are not considered necessary in standard care and therefore not covered by insurance though and will be very expensive. But Kevin and I both decided that we wanted to do it no matter what and looks like we'll just have to take out a loan to pay for it! We don't want to regret not doing something that could end up helping Austin in the long run. There is no risk to Austin, as he really is in essence receiving his own blood cells back and the procedure usually takes about 15-20 minutes through an IV. We just hope and pray that Austin will be strong enough at one month old, to take the 10 hour drive down to North Carolina.
Other than that, nothing really new to report. I go on the 14th for my follow up echocardiogram, another ultrasound, and for an appointment with my new OB. Gonna be a very busy day!!!
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