Slow But Steady

I've got a quick update on how our little man is doing and then I promise the next post will be all about Amber!

 Just to recap at 24 weeks he was in the 31% and then at 28 weeks he was in the 7%. Our Ob was worried ect.. I'm very happy to say that as of this past Wednesday at 31 weeks he was in the 8%. I know it doesn't sound great but we're expecting him to be small and the fact that he's staying on his own growth curve is very good! Our Ob has finally calmed down and we're no longer talking about an early induced delivery (yay). 

I do have to go in next Wednesday for a non-stress test because he hasn't been a big mover/grower. These are supposed to become a weekly thing but I'm hoping he'll do so well we can skip them. Then in two weeks (on the 30th) and every two weeks till he comes we'll have an ultrasound to check his growth.
On December 8th we'll have a NICU consult. Not that we're expecting him to be early or have any serious issues but because of his known diagnosis he will need different/more assessment at birth and possibly some special care.

I can't believe how much his 24 week ultrasound looks like newborn Amber!

It will be interesting to see what he looks like. I can't believe how close it's getting!!

A Surprising New Journey

We are adding to our family! 

Although I'm not sure how much of a surprise this is. 

Most of you who read this already know and I've already updated the page with a ticker and it's on the little calender thing. 

It's been kind of a roller coaster ride, because nothing is simple in this house! 

We are due January 14th. So, yes that means I'm almost 31 weeks and I've about 65ish days left!

Here's a hopefully short synopsis of what's been going:

We found out near the end of May that we were expecting again.

We had our first ultrasound at 13 weeks. I honestly can't remember why they did it, maybe to get a better idea of the exact due date or to help monitor future growth. Things looked really good at this point, lots of movement. 

Since Luke and I are both carriers for I-cell and we went about getting pregnant "in the usual way" at 15 weeks we had to see a prenatal geneticist for a consult. There is a 25% that any of our children will have I-cell but this also means there is a 75% that they would be healthy.

At 15 weeks we opted to have an amniocentesis done. We also had another ultrasound at this point to check growth and to look for any possible abnormalities. We got a big surprise that day and found out that we are having a BOY! I had wanted the gender to be a surprise this time around but he had other ideas and made it very obvious to us! Things looked really good at this ultrasound too, he had a lot of strong movement so much that the tech could feel it too! The amnio itself was pretty painful and much to Amber's dismay made me take it easy for a couple of days.

20 weeks is when things really changed for us. Up until this point we had a really good, positive feeling about this pregnancy;over all everything was going well, he looked good on all the ultrasounds and I was feeling a lot of strong movement. Then we got the call that we were not expecting. He also has I-cell. We were devastated, it was just so unexpected. Things were so different when I was pregnant with Amber it was very hard and had so many complications. I always felt like maybe there was something wrong with her and I ended up being right. This time around has been so easy and uncomplicated that the diagnosis was really a shock to us.
 I think I prefer knowing now before he's born than finding out afterwards like we did with Amber. Although I can't really say it's been any easier getting this diagnosis a second time. Especially since we technically knowingly gave this child I-cell, it tends to make one feel like a bad person/parent. 

At 20 weeks we finally told the rest of our family and all friends that we were expecting, we wanted to wait until after we had the amnio results. At this point we also switched to a high risk ob office in Boston. We also had another ultrasound that showed everything looked good  and he was on track growth wise.

 We had another appointment and ultrasound at 24 weeks. I also had my glucose test, no gestational diabetes for this chick! He was still on track growth wise and looking good.

Per the request of Amber's cardiologist, who will also be this little man's cardiologist, we had a fetal echo done. This was at 26 weeks, I don't have any pictures from it but I'm happy to say at this point his heart looks totally perfect. It's in the right spot, all the valves and everything else looks good. This doesn't mean he's totally in the clear for no heart problems unfortunately. If you remember Amber's heart status/severity changed rapidly in the first year. 

This is the baby's face....

At 28 weeks things changed for us again. Our ultrasound showed that he is now behind in growth. It really wasn't that much of a surprise to us. We knew it was a matter of time and we went through the same thing with Amber. However with Amber we caught it later in the pregnancy and she actually came (unexpectedly) 2 days after we found out so never had the chance to monitor it. The little man had quite a big drop in size in the 4 weeks between appointments. At our 24 week appointment he was in the 31st percentile and at 28 weeks he had dropped to the 7th. Our Ob is/was very concerned, especially since he doesn't move a ton (also something we went through with Amber) and at this appointment told me that she didn't expect him to make it to the end of the pregnancy and they would consider delivery if he were a "normal" baby. Of course I am concerned about his drop in size and I would like to monitor it but I am not concerned that he might not make it. Unfortunately when there is a lack of information on a disease you tend to run into these types of situations, like Amber's last E.R. visit. It's your classic case of if the OB listened to me/Amber's geneticist or read the chart they might not have said those things.

We had another appointment yesterday at 30 weeks which confirmed (much to our Ob's surprise) that our little man was indeed alive! This means, starting tomorrow, I'll be going in weekly or so for ultrasounds to check on his growth. As long as he doesn't have anymore significant drops and stays on his own growth curve we can continue on like normal. 

 We have learned to much from Amber and she brings so much joy to our lives that we can't wait to see what our little man has in store for us. It's going to be in interesting new journey for us!

Someone Turned 2!!

Little Miss Amber Skye turned 2 this September!!

 I'm having serious issues coming to terms with the fact that I have a 2 year old. I don't feel old enough to have a 2 year old and I sure don't feel like she should be that old already! Where did my snugly baby go? Let me tell you she may still look like a baby but by no means did the terrible two skip over us. They do not discriminate against the globally delayed or medically fragile, aren't they nice! Don't get me wrong 2 isn't totally bad. We are really enjoying Amber's personality develop and her sense of humor. Her want to find a way to communicate is also finally coming along which is a very important thing to help avoid tantrums. I'm trying to not complain about tantrums because they are no where near as loud/violent as your average 2 year old.

Birthdays with I-cell are not always the funnest of times. We were very excited to celebrate Amber's 2nd birthday because 2 is a fun age and birthdays are fun. We were also excited to just be celebrating because so many people didn't expect her to make it to this birthday (us included at some points in the past year). I wanted Amber's birthday to be something big, special and memorable. Unfortunately when it comes to I-cell and birthdays or any special event there is always that horrible, horrible thought of "this could be her last one". 

On top of the uncomfortable conglomeration of emotions her birthday brings there are also the unfortunately realization of not being able to celebrate her birthday in a "normal" way. Most birthdays involve cake. Well Amber does not do well with baby food and can not swallow/eat pieces of anything food type or not. The worry of her aspirating and getting pneumonia or worse, kind of takes the fun out of birthday cake. Then there is the question of the party. Amber loves people and other kids and would really enjoy a huge party. Unfortunately Amber's birthday is at the beginning of the cold/flu season meaning most people are sick or around too much sickness to be around Amber. We would love to make her happy with a big party but again the risk of her catching something really takes the fun out of it. I had such a hard time with all of this this year that I almost didn't do anything for her birthday and then that lovely thought of it possibly being her last popped into my head and made me feel even worse.

So we found some middle ground! We decided to go places for Amber's birthday. We planned a Zoo and a Farm Zoo trip. Both outside with little to no risk of her catching anything and thankfully the weather cooperated (not too hot not too cold) so she was able to be comfortable being outside! It was the perfect solution she loved seeing the animals and people and best of all she did not get sick!!! We also had two little family parties for her with our MA and PA families. We did do cake; well cake at one party, cupcakes at another. Amber stuck her hands in the frosting but didn't eat any of it so she didn't have any issues. It also helps that Amber is so stinking adorable, loves to be the center of attention and loves opening presents! I think she could make any situation fun!

I would like to also thank everyone who stuck with me through my hiatus. I believe I'm ready to return now and please excuse any awkwardness in my posting I think I've almost lost my knack for writing coherently!