BIG NEWS!!!!!

Well, I had my last doctors appointment this morning. We had the NST, the ultrasound, and then we were going to have our regular checkup. But our regular checkup really didn't go as planned. 

The doctor brought us into the room and explained that my amniotic fluid levels are pretty high which wouldn't be too much of a concern except that if my water would break on its own, it would be a large gush and that could cause either part of the umbilical cord or part of Gavin to flow out with it. And with us being two hours away from the hospital that would not be good. They decided that the risk of waiting the extra week would not really be worth it and decided to push up the c-section date. So now instead of being 7 days away from meeting baby Gavin we are LESS THAN 24 HOURS from meeting Gavin!!!!

That's right, Gavin will be born tomorrow, December 4th at 11am! 

EEK! I am so excited to meet him and so incredibly nervous! I feel like I could cry and jump for joy and throw up all at the same time!! Well, this won't be a long post today because I feel super behind and need to get ready for tomorrow! I will post an update as soon as I can but no promises when that will be. Depends on how good Gavin does after he is born! <3

TWO WEEKS!

Yes, in just two short weeks Gavin will be making his grand entrance. I am so stinking excited I can barely type!! ~Thank you to autocorrect for fixing the last two sentences where I had about five or six silly spelling errors haha.~ Anyway, two weeks from this exact moment I will hopefully be snuggling with my little guy or at least sitting next to him holding his little hand.

So today we had an appointment at Jefferson again with the MFM office. We had a non-stress test first, which he passed much before the time requirements. He was being quite the wiggle worm this morning. Then, we had an ultrasound to check the blood flow from Gavin to the placenta, which again looked great. We did find out that today Gavin decided that he wanted to lay in my belly sideways (which is why he's been causing me so many pains the last 24 hours) and that I have a slightly higher level of amniotic fluid than normal. But these two things are really not issues, he looks to be doing very well and that's what matters. 

So after the ultrasound we waited to have my regular 37 week checkup. But we waited seriously FOREVER! They said they would get us in as soon as possible even though there was supposed to be a gap (they needed to put me on the schedule somewhere but they were going to get me in and out as quickly as they could). Well, my ultrasound was done by 9:45am. My scheduled appointment time was 11:30. Well, instead of them getting me in before my scheduled time, we waited almost an extra hour when I finally went back between 12:15-12:30. Ugh the waiting was super frustrating. So they took me back, weighed and measured my belly, and pretty much sent me on my way.

I am so glad that I only have one more appointment with the MFM office at Jefferson before the delivery. No offense to the people, they seem very nice. But I feel like they are so unorganized, especially because I have to drive a minimum 1.5 hours to get to my appointments there. 

So now the countdown begins.. 14 DAYS. I cannot wait until I get to finally meet this little sweetie pie. 

Basket Social for Gavin!

Yesterday was the Basket Social at our local community center for baby Gavin. The woman who put it together for us works with my husband at Sheetz and she did an amazing job! She got many of the local businesses to donate baskets or gift cards, and some local people donated baskets as well. I believe overall there were more than 100 prizes that people could win. 

There was also lots of food that was donated, my mom (who is an amazing person) made hamburger bbq, broccoli cheese soup, and a bunch of desserts. Other people from Fleetwood made food as well, and they even got some companies to donate rolls, chips, and drinks.

I was amazed at how many people helped out with putting together the basket social for our little guy. It is truly amazing to see how many people care about our family; it really is quite heartwarming that so many people came together to help. 

There was also a really great turnout of people! Family and friends as well as people from our community came together to buy tickets and win some great prizes! 


Overall, I am just so thankful to everyone who came to help, donate, and win! It was a great day and I am so happy at how everything turned out! It was quite an amazing day for my little family! 

2nd Appointment at Jefferson Hospital

Yesterday was our second appointment with the Maternal Fetal Medicine Doctors at Jefferson Hospital. We had an ultrasound first and then we had a regular OB appointment scheduled for the day. After the doctors appointment we were then going to meet with the Neonatal team to go over Gavin's c-section in more depth. 

So ultrasound first: Gavin's arms and legs are measuring a good amount behind where they should be (no surprise there) but the doctors said that his rib cage seems to look good from what they can tell and that they do NOT see large amount of beading! YAY! This was one of our main concerns and it was very relieving to hear. 

Next I had my regular checkup with the doctors. They said that just to be on the safe side they want to do weekly ultrasounds and non-stress tests because he is measuring small (which they know is most likely because he OI but they want to make sure there isn't anything else going on. So then they added an NST onto our list of things to do and we went to meet with the Neonatal team.

We went up to the NICU and met with some of the team that will be caring for Gavin directly after his birth. They went over in more detail how to c-section will take place and when things will happen. Here's more or less how it is going to go: 
-Get there at 7am
-Be prepped and ready by 8:30am
-C-section takes place at 9
-Gavin will be taken out during the c-section and placed directly on his egg crate mattress
-If he is breathing well enough they will let me look at him before they take him to the warming room directly next to the OR
-Jeremy will go with Gavin so that he is not without one of us and my mom will stay in the OR with me as I finish the surgery
-Once they are able to, they will take Gavin up to the NICU ands care for him there
-I will go to the recovery room and then eventually head to the post-delivery floor
-Gavin and Jeremy will stay in the NICU and I will have to wait 6 hours post surgery until I will be able to try to stand and then go see Gavin 
Here's my thoughts on how things will go. I am going to be stressed. Nobody knows how well Gavin is going to do once he is born and I wish so much that I could be by his side after he is born. And I won't be able to really look at him and take in every detail of his face until over 6 hours after he is born. I know that Jeremy will be with him every second and that he will be in good hands which makes me a little happier but I am so sad that I won't be there. I have carried him for the last 9 months and had him with me every second and then when the most uncertain time of his life happens, I won't be there. I just hope that they keep me updated on every single thing that is happening with him. I just don't want to feel like I don't know what's happening with my little guy.

We then took a tour of the NICU, the Labor and Delivery floor, and the Post-Delivery floor. It was nice to see the areas we will be going to and to meet some of the staff of those areas as well.

So next we went for the NST. Gavin was kicking up a storm at the beginning. Then he settled down and they said everything looked good and we were able to leave.

It was a long day.. We left at 7am and didn't get home until 5:45pm. And Ayla was with my mom this week and I missed her like crazy! It was seriously the longest I have ever been away from her and I was so glad to be home with my cuddle bug after our long day at the hospital. We have two more weekly appointments (next Tuesday and the Tuesday after that) and then the third Tuesday from now will be baby Gavin's birthday! 

Of Course...

So now I'm frustrated. When we went to visit DuPont they told us that our daughter would be able to go into the NICU when we were there to see Gavin. My due date never changed so I assumed that would still be the case once he was born. 

So now I'm hearing that because it is flu season they aren't allowing children under 10 (besides patients) in the hospital to visit. And that means that Ayla will probably not be able to see her little brother until he is out of the hospital. And who knows how long that will be. 

She has been so excited to meet Gavin and she talks about him all of the time. She grabs my belly, hugs him, and tells him she loves him. And now instead of only having to wait only a few days after he is born, she might have to wait weeks.  I just think that's completely crazy for me to not let my children even meet each other for such a long period of time. 

And also, what if we are still in the hospital for Christmas?? Am I supposed to split my time between my two kids and not get to see them together on the holiday. I was upset that we may have to spend Christmas in the hospital but I figured that we'd at least all be together. Now I find out that we might not even be allowed to be together for our first Christmas as a family of four? Seriously? Because things aren't stressful enough let's add this to my list. 

I have the fetal coordinator double checking for me, but I doubt anything will allow me to have Ayla in the hospital, even if she has her flu shot. I am on the verge of tears and I just wish that ONE THING would be easy.

My mood today:

C-section is SCHEDULED!!!

We have a birthday for Gavin!! YAY! There's one less thing that we have on our unknown/to do list!

As you can probably assume I am very excited! Now, barring any "Oh my gosh my water just broke!" or "I'm in labor now!" moments, Gavin's birthday will be..... (drumroll please)...

DECEMBER 10th! 

YAY! That's just four days after my birthday, and 27 days from today! Holy cow, I can't wait!! So now begins my 
Super Impatient To Meet My Little Guy Countdown!! 

Stressing Out

Okay, I am having a slight freakout day today. My due date is less than 5 weeks away from today and I feel so unprepared for Gavin's arrival.

We still don't know when he will be born. My husband is planning on taking leave from work for a little bit once Gavin is born and his schedules are made 3 or more weeks in advance. We told the Maternal Fetal Medicine doctors this at our appointment almost two weeks ago and they said they'd get back to us last week with a date so we could plan accordingly. It wouldn't be such a huge deal if Jeremy could just get off of work, but he needs to know in advance and they know this. I don't think it should be so difficult to get an answer from the doctors about a c-section date. 

I have no clue where everyone in our little family will be once Gavin is born. I know that I will be in the hospital obviously, but we don't yet have a plan for my husband and daughter. I have never been away from her for a night let alone more that two hours at a time, and I am really not looking forward to not being with her for multiple nights in a row. We don't know if she will be with Jeremy or if she will be staying with my parents overnight. I don't know if she will be nearby at maybe a hotel (I doubt that will happen) or if she will be at home which is over an hour and a half drive away from me. MAJOR AXIETY OVER HERE. 

I know we probably won't be home for Christmas. I have been thinking about it logically and if I do have my c-section the first weekday after I am 39 weeks it will be December 9th. So that leaves 16 days until Christmas. Unless he does extraordinarily well I doubt we will be home before then. So we will have to have Christmas in the Ronald McDonald House/Hospital. I don't know how we are going to make it work. We will be nowhere near most of our family and not only that, we won't really be able to decorate at all. I don't know how we are going to make it feel like Christmas for Gavin but more for Ayla. She knows what Christmas is and I don't want to take anything away from her. 

I am very much stressing out. I have so many things unknown and I just wish that I had all of the answers. I will just try to relax as best I can. On a positive note, we have been getting things ready at home for Gavin. Almost all of his clothing is washed, his pack and play is set up, we got the baby swing and glider ready, we bought a diaper bag and a hoppy cover, and we got Gavin's carseat and base installed in the car! And I have about 90% of my Christmas shopping done and more than half of it wrapped already!

I guess it's just time to celebrate the little tasks that have been accomplished and hope that everything else will fall into place. Also, here's an absolutely adorable picture of Ayla snuggling with Baby Gavin. One of the things that makes me happiest is my daughter loving Gavin so much before he is even born.

Getting Closer!

HOLY MOLY! Time is really flying by at this point. My "What To Expect" App says I have only about 5 weeks until my due date which means realistically only a little over FOUR WEEKS until Gavin is here. 

At this point I am very excited to see and hold our little man. It has been an incredibly long journey this pregnancy, and I am ready to be reaching the end of being pregnant and entering the beginning of our life with two children. 

At the same time, however, I am finding myself getting incredible nervous the last few days. There is still so much unknown and I hate that I can't just make everything better for Gavin. I know he will be in pain and it kills me that I won't be able to take that pain away. I don't know how well he is going to breathe once he is born. I don't know what the future holds for us and it is so incredibly stressful. 

Well, only a few more weeks and we will finally meet Gavin and we will know some more. But until then I will probably be an excited ball of nervousness. 

Our First Jefferson Appointment

Wednesday was our first appointment with the Maternal Fetal Medicine OBs at Jefferson Hospital. We had scheduled an ultrasound, a consult with one of the doctors, and a fetal echocardiogram with added oxygen.

First we had the ultrasound. They measured all of his bones and body parts and took some 3D images of his ribs/chest. They really didn't tell us anything after the ultrasound which I was a little upset about. They didn't tell us how his ribs looked, which I was really looking forward to hearing about. They said there was beading (breaks) on the ribs but did not tell us if there was a lot or a little. A small amount of beading would be okay, but one of our main concerns is that if there is too many breaks on the ribs he won't be able to breathe once he is born. I am hoping that they can give us more information the next time we go. Then we met Dr. Berghelli, one of the OB doctors. We only got to meet with him for a short period of time but he seemed to be very nice. But again not much new information was given to us.

Lastly, we got our fetal echo with oxygen done. For this test, they measured the baby's heart and lungs and then measured again while I was breathing into an oxygen mask. He explained it like this, "When a baby is born and is blue, we put an oxygen mask on them and if everything is working properly the baby should pink right up. We tested this on babies in the womb and it works the same way." So we got this test done and the doctor said that Gavin's heart and lungs worked exactly how they are supposed to, which is really good to hear. He also said that he didn't see a hole in Gavin's heart but if there is one it has got to be pretty small at this point.

So overall, I wish we had gotten more information than we did, but I am really happy about the news that we did get. Hoping for more good news when we go back in three weeks.

My Two Little Loves

Oh my goodness, I cannot tell you how much I adore my daughter and my soon to be son. I know that they cannot see each other yet, but I know already they love each other. She is constantly giving my belly kisses and trying to feel Gavin kick. She snuggles my belly and tells him she loves him. Ayla can't say Gavin quite yet so she just calls him "Gav." It is so sweet. And my little guy Gavin always wiggles so much more whenever Ayla is near my belly. He kicks and rolls, and I feel like thats his way of telling her that he loves her too. I just cant tell you how much joy I get from their little interactions already and he isn't even born yet.

Ayla loves to fall asleep hugging my belly. Today she fell asleep with her head on the center of my stomach and Gavin was kicking her face over and over again. Her head kept bouncing up and down and it was so funny to me. Oh, my kids are too cute. Well, I only have about 6 or 7 more weeks until Gavin's arrival, and although I am incredibly nervous that she will just want to squish him with love, I cannot wait until I can see them together for the first time.  

This pregnancy has been more stressful than I EVER would have imagined it to be, but I wouldn't want my life to be any other way.

Gavin in 3D, Take 2!

We went back to Bountiful Babies Ultrasound in Center Valley, PA yesterday to try to get a better view of little Gavin. It took a little coaxing and a LOT of patience but he actually showed us his adorable little chubby face! I am so happy we actually got some good pictures of him this time!

At first he was buried up against the placenta wall and wouldn't move himself out of that area, but we wiggled him around a bit and finally managed to get a big enough pocket of fluid around him to see his face! He kept puckering up his little lips like he was trying to make a kissy face, and at one point he gave us a peace sign with his little fingers. Oh gosh, he was just so stinking cute. The package we got came with a DVD of the ultrasound and I am very excited to watch it again and again!

If you are pregnant, near Center Valley, and looking for a great place to get a 3D ultrasound, I highly recommend you go here! It was a wonderful place! They also do massage therapy and maternity/baby photography. They also have some really nice specials if you look on their website, and as you can see, I got some AWESOME pictures of Gavin.

Check out their website! http://bountifulbabiesultrasound.com/index.html

Zoo Trip!

This week is the first week in a long time that we haven't had to go to any appointments for Gavin, so yesterday we decided to take a trip to the Philadelphia Zoo. I absolutely love the zoo and my daughter Ayla was so excited to see all of the animals. It was so nice to take a stress free day trip with our daughter before our little guy's arrival. The weather was great and we all had such a wonderful time. 


Ayla and Daddy were very excited to get into the zoo as we walked up to the gate.

We took a little break to have a snack shortly after we got to the zoo. We were too hungry to walk all the way through without something in our tummies!

Since we were at the zoo last, they added the Kids ZooU, which is an educational section for children. They had a butterfly room with hundred of butterflies, a play area, and then outside they had an area with goats that you could go in and pet or brush the goats. Ayla really enjoyed being able to stand with the goats and pet them. She even made a little goat friend while we were there!

Ayla enjoyed looking at the otters and thought they looked like mermaids! We got to the otter exhibit right as they were feeding the otters, and Ayla was very interested in watching them eat. First, they would throw their fish around for a bit, which she giggled at. Then they would gobble up their fish as quickly as possible. 

Ayla loves monkeys, or as she calls them "ah-ah's" (because of the sound they make), so she wanted to pretend to be a monkey! Then we went on to see the gorillas, orangutans, and other monkeys. She liked the gorillas so much she sat and watched them for a very long time. Then she got to see the baby orangutan which she thought was adorable. The baby kissed the adult orangutan and Ayla turned to me and kissed me to copy the monkeys. She is so sweet and had such a fun time watching them.

When we saw the snakes, Ayla loved pointing out how their tongues moved and mimicked them as well. She had to show me how funny their tongues were. Then she saw this one snake and she thought that its nose was the funniest thing she had seen all day. I was able to get this absolutely adorable picture of her turning to me and giggling about the snake's nose.

And of course her favorite part of the day was seeing the lions. She had been asking about them since we got to the zoo and she just loved looking at the lions. It stood with the male lion and just looked at him for a while, roared at him a bit, and did not want to leave when it was time to see the next animal. 

Overall we had an amazing day at the Philadelphia Zoo. It was a great day for our little family. And as a bonus on top of the day, Ayla was doing so great with her potty training that she went all the way through the zoo without peeing in her diaper. She waited until we made it to a bathroom at the end of our trip to use the potty. I think after that it is safe to say that my little girl, at 2 years and almost 2 months is potty trained! It was a great bonus to the fun day we had!

DuPont!

Yesterday was our long awaited consultation with Dr. Bober at DuPont! I haven't really mentioned much about it so I will give a little background story first. My husband and I joined an OI Parents board on Facebook shortly after we found out about Gavin's condition. We introduced ourselves and gave a little information to the other parents about where we had been going and what was going on with our son. Every single parent was overwhelmingly recommending that we go to the DuPont Clinic and meet Dr. Bober, who they said was amazing with skeletal dysplasias and OI specifically. They said that DuPont is considered an "OI Center of Excellence" and that we should most definitely meet with the team there if nothing else. 

We spoke to the fetal coordinator Tammy who set everything up for us. She scheduled a consult with Dr. Bober, a consult with the cardiologist whose name I believe is Dr. Thacher, and also set up a tour of the DuPont NICU and of the Ronald McDonald House across the street. 

First we met with Tammy and Dr. Bober. I have to have a small side note and say that Tammy was one of the most caring and sincerely wonderful people I have met. She was so unbelievably helpful and stayed with us the entire day. She is amazing. Okay, now back to our day. Dr. Bober sat with us for over an hour and really explained so much about OI, the possible health complications that could arise, and the treatments available. He said that Gavin's chest size looks great, but another thing we need to be cautious of is the rigidity of and amount of fractures on the ribs. If there are too many fractures, this is a sign that the ribs will not withstand breathing and that would most likely be a lethal case. The strength of the ribs is also something that we will need to be concerned with, but this is something that we will not know until Gavin is born. Dr. Bober told us that the only one who really knows how things will go after birth is Gavin, and we will have to see how he does. If the ribs are strong and he has no issues breathing, that would be our best case scenario. But he said that most likely there will be some give to his ribs and there may be some respiratory issues. This, however, he said does get better with time. He also made it apparent to us that when Gavin is born he will have fractures and that we will need to prepare for that. They will give him morphine and that will help with pain management. He also said that the first week or so will be a "wait and see how he does on his own" kind of week. We will monitor him and wait until his fractures have some time to heal before setting us a course of action. He may get PAM treatments shortly after birth or 3-4 months after birth depending on how our little guy does. He also explained rodding surgeries and Tammy said that we will get to meet with the orthopedic surgeon to go into more detail about that end of the treatments at a later date. Overall, I left this appointment feeling so much more informed about our baby and what will happen from here on out.

Next we met with the cardiologist and she went over Gavin's VSD with us. We didn't get to speak long with her because we already had the information we needed about his heart. She said she would like another fetal echo to be done before birth and that it seems to her like it is a moderate to small size now and should not be of main concern to us at the moment. 

After that we got to have a tour of the DuPont NICU and actually got to meet a family in the NICU that had a baby with OI. We got to speak with them for a little about how they had lots of concerns and he was born perfect to them. They were worried just as we are now and although he has fractures and its scary, it is so different once your baby is born. It was great to get to see them and their son was absolutely adorable. The NICU itself is a really great space and they even said that we can bring our daughter in to visit with Gavin once he is transferred to DuPont. 

Last on our agenda was the Ronald Mcdonald House. It is not even a minute drive from the hospital and it seems like an amazing place that we will be able to stay for the duration of time that Gavin is in the hospital. There is plenty of play rooms that would be great for our daughter Ayla, meals provided every night for dinner, and you can stay as long as needed while your child is in the hospital. It is great to have such a wonderful resource so we can be close to our little guy while he's in the hospital. 

Overall I am so happy with our meeting yesterday, and we have decided that we want to receive Gavin's care through the Nemours/DuPont Clinic. We will have our delivery take place at Jefferson Hospital in Philadelphia where Gavin will stay until I am discharged from the hospital. Then once I am discharged he will be transported with a team by ambulance over to DuPont where he will stay until he is ready to go home. I am feeling much more at ease now that we at least have a tentative plan for our little guy. I am very ready for December to come so we can see what our little guy can do!

Finally, Some Good News!

We had an appointment at CHOP yesterday to have another ultrasound to check Gavin's growth and to get a fetal echocardiogram to check his VSD. I was as nervous as ever. 

First we had our ultrasound. They took all of Gavin's measurements and you could see obvious evidence of his fractures on his tibias especially. At least on of his legs bones was almost U-shaped because of the fractures he has had so far. After the ultrasound tech was done we waited to hear the results from the OB. I was just so nervous that his chest growth had slowed down and that was all I could think about. When the doctor came in he told us that the legs and arms were measuring 4-5 weeks behind which was to be expected from previous ultrasounds. He said that the interval of growth was good for how he is growing. Then he said Gavin's chest growth was up at about the 50th percentile this month... and I about screamed out of happiness. The doctor said he remembered that last month Gavin's chest size was only at about the 10th percentile so he must have had a lot of growth in the last month! We have been so worried about the size of his chest and hearing that it had grown so much almost feels like a dream come true! 

One worry down, one to go. 

Next we had our echo to check out the baby's heart and met with the doctor to get the results. The doctor said that the VSD had gotten smaller which is what we were hoping for! She said that she would like to check it one more time around 36 weeks along, but this is definitely good news! 

So overall I am so happy with how our appointment at CHOP went! I think that I am still in a little bit of shock at how much little man grew! We were so happy that we even put our little guy's pack and play together finally! I am hoping he continues to grow at the same rate and that he will be as healthy as possible when he is born! 

Our Baby in 3D!

Saturday afternoon we got to see our adorable little Gavin at our 3D ultrasound. It was so great to be able to have an ultrasound that wasn't super stressful and that was just enjoyable.

He didn't really want to cooperate, he just wanted to snuggle in the position he was in, but we managed to see half of his face and his little arm. It was so great to see his adorable little face and it just made me so overjoyed. And his big sister Ayla was so excited to see him in 3D. She was yelling, "Mommy, mommy, Gav!" It was the sweetest! 

Anyway, because they couldn't really get a good view of his whole face, the woman that does the ultrasounds said that we could make another appointment for an ultrasound to come back for free and try again. So we will be going again sometime within the next few weeks! Yay!

On another topic, tomorrow we are headed to CHOP for an ultrasound and a fetal echocardiogram. We will be checking to see how Gavin's growing, especially his chest and also to check to see if his VSD has gotten any smaller. Will update after our appointment tomorrow!

Something Fun (Creating Gavin's Registry)

I have finally decided to do something fun for Gavin. I made a baby registry for him at Babies R Us and Amazon.com. I really only added clothing and a few other items because my husband and I went out and bought his car seat, stroller, and pack and play last week (YAY!) which is super exciting. We finally made our first purchases!

While I was looking online for clothing for the registry I realized how difficult it is to find clothing that snaps or zippers all of the way down the front. After talking with many parents of children with OI, the suggested getting clothing that you do not have to put over the baby's head or push their legs through as doing so can cause broken bones. So when searching for clothing for him, I had to be very mindful of clothing that I would have the easiest time putting on him. It was difficult, because most onesies and clothing in general are things that you put over the babies head, as most of the time you don't need to worry about such things as broken bones on your newborn/infant. 

Another thing that I needed to be mindful of was the fabric. Babies with OI many times have issues regulation their body temperature and get very sweaty very quickly so I needed to look for things that were cotton or another breathable fabric. 

I ended up finding a decent amount of workable clothing through Babies R Us and Amazon combined. Amazon has a ton of kimono style onesies which I think are adorable and snap all the way down the front. I put mostly just onesies, a few sleeper sacks I could find, and some sleepers. I know that Gavin's will be born in December which will most likely be very cold, so I'll have to get lots of blankets too!

I am so glad that I was able to put together a list of things to get for our little guy, its something I have been waiting so long to do and it makes me so happy to finally have done it!

Here's a link to the two registries in case anyone is interested in taking a peek at what I've decided would be good clothes for Gavin:

http://www.toysrus.com/registry/search/index.jsp?_flowExecutionKey=_cF3A94FE7-C894-9BE4-F2C9-337D664D4EE4_kA4BC9783-F9CA-67E8-C0A4-B28BE11F4618&overrideStore=TRUS

http://www.amazon.com/gp/registry/registry.html?ie=UTF8&id=X9KJWSA7306Q&type=baby


We also have a bunch of events coming up to look forward to,  first thing happening this coming Saturday! Can't wait to share! <3

My Worries

So this is a random post but I feel like I need to just let it out. I am scared. I never imagined that something like this could happen to me or my family and I am so scared. 

Most days I am feeling very in control and like I can conquer anything that life throws my way, but today is not one of those days. 

I am scared of getting a c-section. I loved my daughter's birth. I loved feeling like I accomplished something wonderful when I pushed her out, and it was amazing. I never wanted to have a c-section. It just seems so major. I know it is for the well being of my little guy but the thought of being cut open like that is terrifying. 

I am scared of the possibility that he wouldn't make it. The thought of losing my son so quickly after he is born is something I'm not prepared to deal with. I don't want to think about it. But what if it happens. I don't know how I would be able to handle it if that were to happen. I am praying that he continues to grow as he has been and that this is just a silly worry and nothing else. 

I am scared that I am going to hurt my son when I hold him. I know that babies with OI break easily, sometimes without much force at all. I am just so afraid that I am going to pick him up or try to get him dressed and break his bones. I know it is something I will have to deal with if/when it happens, but I am just so scared knowing that he will be in pain many times throughout his life and that I may accidentally be the cause at one point or another. 

I am scared of being away from my daughter while I'm in the hospital after my c-section. I am a stay at home mom and I spend all of my time with her. I haven't spent more than a few hours away from her at a time and I will be delivering about an hour and a half away from home. I don't know if there is any way for her to stay closer to me without paying an arm and a leg but the thought of being away from her for an extended period of time gives me a ton of anxiety. 

I am scared of how my daughter will be around the new baby. She loves babies so much and is just incredibly sweet, but I wouldn't want her to accidentally be too rough and hurt him. But I also don't want her to be afraid to be around him. She only just turned two in August so she is still very young and I don't know if she will really understand that she needs to be extra careful when around him. 

I am scared that we won't be able to give our daughter an amazing Christmas this year. Because I will be delivering in December and he may need to be in the hospital for an extended period of time, we might be staying at a Ronald McDonald House for Christmas. And we won't be able to be with family like we are every other year. I know that we will make it as special as we can, but I'm afraid that it won't be good enough. 

I'm scared I won't be able to nurse our son. I loved breastfeeding our daughter and I'm afraid for one reason or another I won't be able to do it this time around. There are so many wonderful benefits to nursing that I really hope that I can. 

There is just so much more that I can't even seem to wrap my mind around and so many more things we need to do to prepare for our son's arrival. We haven't bought a single thing for him yet. There was just so much uncertainty that my husband and I didn't want to go out and buy a bunch of things that wouldn't work for him or that would need to be returned. We have no clothing, no car seat, no stroller, no pack-and-play (which we will be using for right after he comes home), no diapers, nothing. I am feeling overwhelmed with my emotions at the moment, and getting some of it written out has helped ease my mind at least a little bit. Hopefully I will be able to get some sleep as it is currently 12:47am. 

Goodnight all. 

I Don't Even Know... Part 2

So after a very LONG two week wait, we headed to CHOP. We were there at 7:30 am and the first thing on our agenda was baby's echocardiogram. This was basically a very detailed ultrasound of his heart to see if all the chambers were there and everything was working properly. We were there for maybe 30-45 minutes and then were told the doctor wanted to meet with us directly after the echo, which automatically triggered to me that something was wrong. As it turned out, they found a Ventricular Septal Defect, or VSD. This is a moderate sized hole between his left and right ventricles. Sometimes it closes on its own or gets smaller, and other times it will need surgery. But overall not a huge concern or worry for us. 

Next, we had an ultrasound so they could measure everything on the baby and get as detailed information as possible. They measured all of his internal organs, his chest, his head, all of his arm bones, his ribs, his legs, and his hands and feet. This took over 3.5 hours though because he was being a little wiggle worm and could not get leg measurements for an incredibly long time. 

After the ultrasound we waited to meet with a genetic counsellor and doctor to go over what they found. The doctor then told us that they found that all of his long bones were 3-4 weeks behind, his femurs especially were very curved/bowed, his skull was lacking mineralization, and he only had 11 ribs on each side instead of 12. With all of these things put together they said it pointed toward Campomelic Dysplasia, which was a lethal form. If we wanted to know for sure if this was the case we would need to do an amniocentesis. So my husband and I discussed it and we decided to go ahead and get an amnio done. 

In the two weeks waiting for the results I was so up and down. With CD there was only about a 5-10% survival rate. It broke my heart to think I may never be able to bring my son home. But also I found a support group where there were many children with CD that were survivors and doing very well, so this gave me a glimpse of hope. 

With the call from the genetic counsellor, we found out the baby does NOT have Campomelic Dysplasia. We had a huge sigh of relief and then another moment of anxiousness. We still didn't know what was wrong. So we scheduled a CT scan at CHOP to see if they could get any more information.

After the CT scan, which took barely no time at all, we met with the doctor again. She told us they believed there was possible old fractures that had previously healed on the baby and that this led them to Osteogenesis Imperfecta, or OI. This has varying severity in the different types, one type is is normal or close to normal height and just a higher chance of breaking bones, one is lethal, and the last is somewhere in between the other two in severity. So we had another scary wait. 

About two and a half weeks later we got a call from the genetic counsellor. She told us they found a mutation and that baby has Type III OI. Type III is the middle severity. So we made an appointment to go to CHOP again and get an ultrasound and meet with the doctor who takes care of the babies with OI. 

The ultrasound went pretty well, the legs and arms were measuring behind which we knew would happen, and his chest was in the 10th percentile, the OB said this is still within a good range as the issues begin at around the 2.5 percentile. And the skull looked better than the last ultrasound which was also good to hear. 

But then we met with the doctor. We first looked in detail at the gene mutation found in the baby's DNA. Apparently they only found two other instances of babies with this exact mutation and we do not know what happened to either child after birth. So that was a bit scary to me. Then we looked at the CT scan. She told us that they believed his type to be somewhere between Type II(lethal) and III(varying) because his skull seemed more like Type II and his chest looked more like Type III. All of this information was just so scary for me that I was just trying to hold back tears and my husband was the one talking to the doctor. I just remember trying my hardest to keep myself composed. Thank God for my husband being as strong as he is because I needed him to speak for both of us which he did wonderfully. 

So that is where we are at now. I am currently 26weeks and 3 days pregnant with our son, who we've decided to name Gavin Alexander Baker who has Osteogenesis Imperfecta. We are at this point trying to read and gain as much information as possible about how to care for a child with OI and we are hoping for the best. 

I Don't Even Know...

Oh boy I don't know. I don't know where to begin. I tried making a blog once before and kind of gave up. I had no idea what to write about. But my life sure has changed since then. It's like I jumped on this crazy roller coaster that I didn't even know I was waiting for, and it hasn't stopped yet. I guess I'll just start with our long journey to this point in time.

My husband and I have an amazing daughter named Ayla Quinn who just turned two. She is the funniest little thing I have ever had the pleasure to know. She is so smart and amazing and we are truly blessed to have her in our life. My pregnancy with her was as normal as it could have been. Absolutely nothing out of the ordinary. 

After having her we knew that we wanted to have more children. So three months after having her we started trying for baby #2. We anxiously awaited the day we could give our daughter a sibling. Well, a year passed and we were still trying. It was beyond frustrating and heartbreaking for an entire year to go by and be at the same place you were before. I went and talked to the doctor and she said to give it a few more months, so we did.

Finally, 16 months after deciding to have a second baby, we got our positive pregnancy test! We were so excited and happy, and just beyond words. But something felt off. I never really mentioned it to anyone else, but to me something didn't seem totally right.

Well we had our first "viability ultrasound" and the baby was measuring perfect! We heard the heartbeat, and my mind was at ease. I thought to myself, "baby is okay, you are just being overly cautious. Now you can relax."

We did the Sequential Screen with our second pregnancy just as we did with the first. We figured nothing would be wrong and hey, we'd get an extra ultrasound out of it so why not. After our second round of blood work, we got a call from our doctor's office. The PA called and said she didn't want us to worry too much, everything is usually fine, but our screen came back with an elevated risk for Down's Syndrome. We were really shaken up but were thinking that everything would most likely be fine and tried to not worry ourselves. 

At 18 weeks and 2 days pregnant, we went for a level 2 ultrasound. First we found out we were having a baby boy! Which I had a feeling about the whole pregnancy. Then genetic counsellor joined us in the room when the ultrasound tech turned to the counsellor and said he had some concerns about our baby's femurs. We asked him before he left the room if he could give us any more information and he said the baby's femurs were curved and short, it was a significant find but he couldn't tell us more than that. 

The doctor came in and said our son's long bones were all measuring about 3-4 weeks behind and his femurs had a significant curve. He said the baby had some type of skeletal dysplasia, or dwarfism, but he couldn't tell us what type it was. At this point I was okay and thought that wasn't too bad, something we could easily handle. Then he mentioned that some forms of dysplasia are lethal where the baby would not survive once born. This is the exact point that I lost it. Tears were streaming down my face. What if my son doesn't make it? I just couldn't even handle that thought. 

So we were next told to go to the Children's Hospital of Philadelphia (CHOP) to see if they could help us diagnose what type of skeletal dysplasia our son had. We got a call from CHOP a few days later saying that we had an appointment scheduled for two weeks later. So cue the first scary two week wait.



-I will continue with the rest of the story on my next post-