The NAM

Its been a rough few weeks for us. I think it was kind of a reality check for me. I have been on cloud nine with having a baby who was supposed to struggle when he arrived but did completely the opposite.  Surprisingly everything has just gone so much better then was expected, but getting this nam has sucked.   He’s been seeing his Orthodontist ( Dr. Yamashiro)  at Primary Childrens every two weeks for the appliance.  The nam is designed to help shape his nose in prep for surgery as well as keep his tongue, and bottle from spreading the palate further apart.  The tape across his lips is actually stretching his skin. Our goal is to make it so when the tape is off and his skin is relaxed the lips are touching. It just means that there will be less pulling when they do the lip repair. Its amazing to see what its done in such a short period of time.   Riley will wear this until his lip and nose repair on February 5th, so he has a month more with it. After the first week with it he just screamed and cried. It was like I had a totally different baby.  He was so uncomfortable with it in. He pretty much had to re learn how to eat,  and really really struggled. It caused sores in his mouth from it rocking so much while he ate which I think was pretty painful. The doctor can adjust those spots when he see’s him up at Primary’s every two weeks. We change the bands, and take out the appliance to clean it twice a day which is very exhausting and emotionally draining for all of us, but in the long run its going to make the results of surgery the best they can be. He also just got his nose stints in which actually don’t seem to bother him too much. The stint we also have to take out at clean everyday and put back in. The nose stint is to help reposition the cartlige which is going to make his nose job look better too. It also opens the air way in the nostril so he can breathe better as well.

Riley Jack: Birth Story

He’s here! Our sweet baby boy is finally here! We were so ready for him to arrive and are so thankful he is happy and healthy.  Riley Jack was born 11.11.14 1:43 AM a day past his due date and after a 19 hour labor.

I’ve been looking at this post for a few days now not knowing how to put this experience into words. The emotions that come with bringing a baby into this world is one like nothing else.

 Rewind back 3 months to the last Perinatologist appointment, it was not a good one. Once again we had more news we didn’t want to hear. Our doctor told us that there was a good chance that Riley would have another defect or syndome that went along with the clefting, because he has stopped growing since the last appointment we had, The Doctor felt there was something else wrong.   He of course couldn’t tell us for sure and wanted us to do further genetic testing which we quickly declined, as it would do nothing to help us or change anything, I was still going to have this baby.  I sobbed and sobbed in that room I was deflated, completely drained and exhausted. We had already gone months knowing that our baby would have a very obvious birth defect and were trying to plan and were seeing specialist, and surgeons constantly. Then in one day were told there was probably more.   We both decided that there was no reason to have any other testing and told the office we were no longer wanting to have ultrasounds. I felt like there was no point.  All I could to was go on planning on a sweet baby that was meant to come to our family for some reason or another no matter what his condition would be. It was all up to Heavenly Father.  The night before my induction my husband gave me a blessing and from that moment I knew that I could handle what ever was a head of me.

After months and months of worrying about what our son was going to look like and overwhelming fears, and unknowns at 1:43 AM we finally got to meet our son. Love and absolute peace replaced all those feelings  of sadness and fear. He was perfect. The moment we saw him, we new we had a healthy baby boy,   with the most perfect imperfection on his tiny face. We know that were more fortunate then most, and don’t know why we were chosen to have him, but we feel lucky. Miracles happen.

This first week we’ve had him home, we haven’t been able to put him down. Bostyn loves on him every day and I’ve already gotten used to and have fallen IN LOVE with his wide smile.  All the nurses and Doctors couldn’t believe how well he took his first bottle and how well he did swallowing with how severe his cleft is on his palate, which was more severe then we expected. I was prepped about him needing to be in the NICU because most cleft babies can’t eat and need feeding tubes, but that wasn’t the case for this little fighter. He’s made it all so easy for us, and we were so lucky to be able to take him home with us.

He will have his first surgery at Primary Childrens in 3 months to close his lip, but until then were just going to soak him up!

Final Countdown

 

I’m to the last few weeks of my pregnancy, and its been a tough pregnancy to say the least, but it seems like within the last couple weeks I’ve been  emotional and extremely stressed.  With this little one, as my due date approaches, I feel less and less ready for it. More scared then confident. More anxiety, then excitement. Not only the typical labor fears, but there are just so many unknowns.  Am I ready to take this on? I’m I the right person to be his mom? Is it really going to be ok?  Honestly right now I have lots of doubts, and just praying that there will be no other complications when he arrives. I’ve tried to picture him in my mind. How severe will his condition be? What will he look like?  I can’t seem to picture how any of this is going to pan out…..But there is another part of me, a stronger part that knows my Heavenly Father loves me, and our family. His hands have been in this from the beginning. He’s been there during my lonelier  moments, and made my darker days feel light. He’s sent so many little tender mercy’s that has helped made getting ready for this long process so much easier.  Probably an 18 year process. From my first ultra sound to our last surgeon interviews, we would not have been able to do it alone.  I’ve looked back at people who I’ve crossed paths with at points and time in my life,  who have now helped things just fall into place. People who I never thought that I would talk to or see again, who have become my best friends and strongest supports.  I cant believe how much this has already changed my perspective on a lot of things. Whats really important in life, and whats not important at all.  Family is the most important thing.

 

The first few weeks of finding out that our son would have his birth defects, I was obviously fragile and emotional as it all was first sinking in. It was really hard going into baby stores, and looking at baby things or anything related. I would just break down and cry, because it was just all still so fresh, and I was still super fragile about it all. Since then, its gotten better, time goes on and I get more confident and less sad. But the other night Mac and I were shopping at the mall and I saw some baby boy clothes through a window and just got that wave of  fear and emotions back in me. Then Mac whispered from a cross the shoe store and lead my attention over to a little boy (maybe 4 or 5 years old) who was walking down the isles looking at shoes. He was THE CUTEST little boy and he was with his two big brothers. He had a cleft lip. I just wanted to go up to him and give him a big hug and just hold him. I know I sound like a creeper but, Its in those little moments that my fear goes away, I don’t feel sorry for my self or want to cry. I feel so excited and so lucky. I get to have two cleft lovies in my life 🙂 We wanted to talk to the family but they disappeared out of the store right after that. They had no idea and will probably never know that by being in a shoe store on a Friday night,  it had an impact on another mom and dad. Just the sight of this little boy made me so happy, and just reminded me how lucky we are to get to have him in our family.

 

This little guy will be such a great addition and blessing to our family. I’m scared of the unknown yes, but I am happy. Only 4 weeks to go!

Perinatologist Appointment #2

This was the hardest appointment I’ve had yet. From last month to this month the Doctor is now really concerned about is growth. He said since 4 weeks ago, baby hasn’t grown much at all. He’s measuring really really small at this point which is causing concern. He said many times when babies are born with clefts its in addition to another kind of syndrome. He’s feeling because he’s not growing like he should be,  he’s worried that more is wrong and suggested I get an amnio. He said they will want to test for Trisomy 13.  Trisomy 13 is a chromosomal condition associated with severe intellectual disability and physical abnormalities. Babies with trisomy 13 often have heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers or toes, a cleft lip and palate, and weak muscle tone. Due to the presence of several life-threatening medical problems, many infants with trisomy 13 die within their first days or weeks of life. Only five percent to 10 percent of children with this condition live past their first year.  All I did was cry the entire appointment. It was completely devastating. After we left I didnt want to talk to anyone, I didnt want to see anymore doctors or have anymore appointments. I just wanted to be alone. Mac and I ultimately decided we were not going to get an amniocentesis. I knew we were going to have a baby and it didnt matter what may be wrong with him. I didnt make a return appointment with the Perinatologist. I just didn’t see the point. I just get more and more stressed out everytime I go to an ultrasound. At this point were just hoping that everything will be ok and that everything will work out like it should.  We did get a picture of this sweet boys face.  Last Appointment we were told that the clefting was on both sides of the mouth (bilateral cleft) but when he looked this time he didn’t see an opening on the other side. So were now being told that our little guy has a complete unilateral cleft lip and palate which means its just on the one side.  Which is good news! Mac was born with the unilateral cleating too, so the more he looks like his daddy the better.

 

Perinatologist Appointment #1

I can’t say how much it meant to me today to hold this picture in my hand. At my initial 20 week ultrasound with my regular OBGYN, we never got to see this. Never got so see his face or profile or anything close to what you would show for a “normal” baby, which was the thing that hurt us the most leaving there. All they could say to me was that it was just such awful news, and so devastating. No smiles or a congratulations. It was as if they didn’t think I would want to see him because of his cleft.

So needless to say I was a little worried about this appointment today

We saw the Perinatologist at Timpanogos Hospital, and I have to say  it was much better, and very calming. They were all so kind and positive. The ultrasound technician who started the appointment off was so kind and explained everything that she was seeing, and kept telling us how perfect everything looked.  She gave me a whole bunch of new pictures of him that we never got to have or see at the OB.  When we saw his profile we were so happy and excited to see his cute little face. I just  looked at him and cried.  I was so thankful for that. It just reassured me again that it was all going to be ok. That I have a perfectly healthy baby getting ready to come to us.

The purpose of the visit was to see more in depth the severity and kind of Cleft. Unfortunately we are still a little unclear because the little guy was moving so much. Dr Spencer told us that he defiantly has a right unilateral complete cleft lip and palate. What he was unclear with, was if the cleft lip went on to the other side. He said if it did, it was mild but there was a good change that its a bilateral cleft lip. It wasn’t the news I was hoping for but were still ok. Before we left,  the Dr. said “Hey, worst case scenario, he ends up looking like Joaquin Phoenix” haha it totally made me laugh! When we first got in there he asked me what we were looking at for the appointment today. I told him we were there checking on a CLP. I prepped him by saying “But were ok, were not freaking out” He just responded by saying “Good, you shouldn’t be. This can all be fixed and its going to be ok.”  Even though we weren’t thrilled about the news, we were still happy and smiling.

 Another day closer to meeting out little boy.

 25 weeks

Dr. Clayton

When Mac was born, his mom never had an ultrasound, so they had no idea what was coming, they were very surprised when Mac arrived, and learned about McKays cleft.  They were very fortunate to find the team they did for Mac, who were all local to Orem/Provo. This was 27 years ago, so much has changed and most of Mac’s Dr’s have passed away or retired;  but he was actually able to get in contact with one of his surgeons that he had who has a practice in Provo.

When I left my ultrasound, and after finding out about baby H, we still had so many questions. Our ultrasound was horrible, and we left very discouraged. (A post for another day) So Mac and I thought it would be a good idea to get a hold of Dr. Clayton, to get advice and a little more direction.  Dr. Clayton was McKay’s plastic surgeon who closed his lips at around 10 weeks.  We saw him last week and it was very very helpful to speak with him. We talked about what our next step is and at this point was he suggested that it be to get another ultrasound to really confirm, the diagnosis, and how severe.  We then talked about choosing a surgeon and team who would see our baby throughout his journey from his lip up to his orthodontic work he will need in his teenage years. He gave us a couple referrals and suggested that we explore all of them before making a decision. We plan on meeting a specialist in Provo who specializes in pediatric plastic surgeries. We also plan on making a trip up to Primary Children’s Hospital and meeting some Dr’s up there.   My next appointment is with a team that comes from St Marks Hospital, to get a special ultrasound to get a good look at our little guy 🙂 Were feeling ok at this point, although we have our days that are harder then others.

I am 23 weeks (nope not 43 weeks like I look.)  and feeling pretty good at this point! Still having all the normal pregnancy joy’s. I’m getting way too hot, lots of cravings, cramps, swollen feet and hands,  feeling very very large, but I’m feeling lots of movement and hiccups 🙂

Its a Boy!

Its a boy!!!!! This family of 3 will soon be a family of 4! We are so excited and cant wait to meet our little guy!

 I knew we had a little boy coming to us as soon as we found out we were going to have another baby.  I had dreamt of him coming to our family for quite sometime, which I never really understood why. It was never clear to me with Bostyn like it was with this baby. Shortly it became clear why at our 20 week ultrasound.  We found out that our sweet baby boy has a birth defect known as a cleft lip and palate. Call it the spirit, God preparing me, or mothers intuition,  but after a few weeks of finding out I was pregnant I knew something was wrong. I think many mothers experience this same feeling of just knowing.  I knew we had a special baby boy coming to us. I tried to brush it off. I tried talking my self out of the feeling by telling myself it was my anxiety that I have about everything that was driving this inside me. It never went away. I prayed every night begging Heavenly Father to send us a healthy baby.

And he did.

As of now our baby faces no life threatening conditions, or anything more serious. Honestly, when I walked into that room to see our baby on a  screen, and knowing that we were not going to get the news we both so desperately wanted, a cleft lip and palate wasn’t on my list of devastating news at the time, but we were both pretty numb.  Not only did the staff handle it EXTREMELY poor, but I had my dear sweet husband sitting next to me, devastated.  Knowing first hand what his son would not only be facing as a new born, but for most of his life.  Feeling that it was his fault. This was because of him. All he could say to me was “I’m sorry, I’m sorry.”  My heart was breaking.

I didn’t know how to comfort him. All we could do was hold each other and cry.  The only thing I could get out was “Its going to be ok.”  I didn’t know how to except that fact, that people were going to see our baby as “deformed”, or “different.” That people just weren’t going to understand.  It was all too much.

I didn’t think that I was going to be strong enough to start this process. A process of handing over our baby to strangers to be operated on and be put under anesthesia over and over again,  from just a baby up through his teenage years. I just didn’t know how.

Then I remembered that Heavenly Father started preparing me for this early on. I had THE MOST amazing man by my side to not only help ME though this, but our son. I knew at that point, beyond a doubt that we were CHOSEN by Heavenly Father  to be his parents, and that this was all supposed to be.  I felt great comfort in knowing that we were the best family for this boy, and that we had a job to do.

We could immediately feel so much support from friends and family. You don’t really know how many people care about you until something like this happens.  I don’t think I can ever use the phrase “I have no friends” or, “No one cares about me” again, because that is simply not true.

Thanks mom and dad, and Todd and Sann for all your love, support. Thank you to those who have answered questions that we’ve had so far, and being so willing to offer help and recourses.  We’ve had so many friends who have lifted our spirits and have given us so much love, and encouragement. You know who you are.

This journey starts now. Heavenly Father doesn’t stop blessing us or guiding us in the direction we need to go. Were optimistic, and can’t wait to lay our eyes on that perfect little face.