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-