Ryker has been "Braylee's Baby" for some time now & he's not even here yet! Way back when Addi was just a teeny baby & both Jason & I were feeling like we might be done having kids Braylee kept telling us that she has a baby brother named Ryker that still needed to come. She would randomly say "Mom I just can't wait until my baby brother Ryker gets here. I would just laugh cause I wasn't even close to deciding to get pregnant yet. Sometimes she would tell that she had seen him in her dreams & tell me how much she loves him & he wasn't even an embryo yet...lol!
So when we did get pregnant, needless to say she insisted that it was a boy & that his name was going to be Ryker. Both Jason & I loved this name I just didn't understand where she had gotten it from. One day she had asked me to take her kitty to school for show & tell & while I was there I met an adorable little boy named Ryker...turns out this little boy was Braylee's first crush & she wanted to name her little brother (we still didn't even know if it was a boy yet) after him. But she has said that its not just because of this little boy she has said that Ryker was his name in her dreams that she had about him. So we had fallen in love with the name & had decided that if it was a boy his name would be Ryker.
There have been numerous times that we said to Braylee "so what if the baby is a girl?" & she would just get frustrated & say "Duh he is not a girl, he is a boy! Just wait & see" So when I was 14 weeks along we went to fetal foto to find out what the gender was. When the ultrasound tech said "It's a Boy!" Braylee said "I told you!!!" She has always known & there was no way she was going to hid it.
So, then back at my 20 week ultrasound when I said that both my girls got there very own ultrasound picture of baby Ryker yawning. Braylee has kept that picture with her always! :) A day or two after the ultrasound sound she put it into a hard cover book (so it wouldn't get bent or ruined) & took it to my sister Jenni's house so she could show it to everyone there, then the next school day she took it for show & tell :) She has always been so proud to show of her baby brother & he hasn't even arrived yet. Every time that I go to the hospital she expects me to bring her a new picture of her baby brother to put up on her wall :)
When we found out that our kids would not be able to see Ryker until he is 2-3 months old we were devastated for all our kids but especially Braylee! She had been anticipating his arrival long before anyone else even knew that he was coming & she was literally counting down the days. So, when I finally got up the courage to tell Braylee that she couldn't see him until he came home from the hospital around 2-3 months old she didn't believe me. She told me to just wait & see because she knows that she will be able to see him in the hospital :) So low & behold now they have told us that my kids can see him as long as they are there soon after birth. When I told Braylee this she said once again.... "I told ya Mom!" She was right again & somehow I truly believe that she is connected to this baby in a way that no one here on earth could ever understand. I am so grateful for this sweet little girl!!
Jason said that when Ryker is older he is going to tell him "You better listen to your sister, she knows what is best for you, in ways no one else can...literally!" lol!
Thursday, February 23, 2012
Sunday, February 19, 2012
December 19th Echo
The last month has been extremely hard! I think we have gone through every emotion possible. For the first little bit I felt like I was living a nightmare & I kept just praying I would wake up & it would all go away. Then I went to being mad at God & just not understanding WHY!?!? I asked so many times- Why me? Why us? How is this fair? Why does God think I can handle all of this? Then one morning I woke up & felt so at peace with it all. I had come to the conclusion of- Why not me? I believe that all of our children choose us & for whatever reason this sweet baby boy decided to choose Jason & I to be his parents. So why not us? I know that we are good parents & I know this baby is going to need an amazing family to come into & a strong home with a Mom & Dad that love each other & are strong enough to love each other & stay together through thick & thin & I know that all of that IS us! I know without a doubt that there is a reason that this is all happening & whatever that reason is I don't know, but I am going to try my best to be the best Mom I can to this special little boy & just take it all in because as hard as it is to see I know it all is a blessing.
This situation has pulled Jason & I together more than I could have ever imagined & it is only the beginning. I have always felt like Jason & I have the most amazing relationship & I have always known that he is my soul mate & felt like it couldn't get any better. But now I have seen a side of him that I had never seen before, a side that I know that no other circumstances in the world would have pulled it out of him. He is the most amazing Man, Husband, & Father in the world & I am so grateful to have him as my best friend & my life long companion! Even though I know that all that we are going through & all that we will be going through is going to be the hardest things we have ever experienced I am ready for it because of having him by my side!
Today is the day we go in for our second Fetal Echo Cardiogram to see more of what is going on with our baby's heart & I am absolutely terrified! Each appointment we seem to hear more news that we don't want to hear & as much as I am trying to stay positive it is so hard! Of course I am hoping & praying that it has changed and that he is okay but I know that cannot happen. I am just really hoping that his condition has somehow improved even if it is just a little bit.
So we get into the echo room & are there for at least a good 30-40 minutes before she gets the Cardiologist to come in and take a look. Once again they start talking medical gibberish to each other & we just wait patiently. The only thing that was said to us was Dr. Menon asked Jason to move closer so he could get a better look & then he said "Look right here, this is where you can actually see the hole in his heart." & that was it then they went back to there gibberish. After being in the room for a little over an hour Dr. Menon hands me a towel & says wash up & meet out in the hall so we go to the conference room & talk. As soon as they walked out I looked at Jason in fear & said "I don't think its good!" He agreed. It just felt like we were in for so much more than we had already thought.
As we went to walk out the door I wanted to run the opposite direction & go home, I had finally gotten myself to a place where I was okay with all the information they had given us before & I didn't know if I could handle anymore! We walked out into the hallway & there stands all the members of the team that had been there the last time, suddenly it was like deja'vu I was absolutely terrified!!! The thought that went through my head as we walked in the room was that they were going to tell us that it was much worse than they had originally thought & that they highly suggest that we terminate that pregnancy...I was panicking I just wanted to go home!
They sat us down & said "Well your baby's condition is different than we had originally thought." Then he started going through a book of heart defects & said "Let me show you what your baby's heart looks like" He flipped through a book for a while full of pictures of heart defects & then he said well there is not a picture of what your baby's heart looks like so let me just draw it for you. I was panicking!!! Out of an entire massive book of heart defects there is not one picture of what we are dealing with??? This could not be good! He started to draw the heart & showed us in his drawing that it was actually the right side of the heart that was small not the left & so I said "So, is it better to have the right side small or the left?" & he said "Oh definitely the right! These circumstances are WAY better than what we had originally thought!" Suddenly a huge weight was lifted off my chest & both Jason & I had a huge sigh of relief! Why couldn't he have said that in the first place? I finally wanted to know more & wasn't scared of it. He said that his right ventricle although small it is still there & able to help out somewhat & that his left ventricle is actually bigger than normal so it kind of makes up for the right side being small. Apparently the left side of the heart is considered the "work horse" of the heart & it pumps blood to the entire body, so having that be small is a big problem. But the right side only pumps blood to the lungs so it isn't nearly as serious of a situation to have it be small as it is with the left. They also told us that the aortic arch & all the valves that they had thought were either not there or under developed were all there & in perfect condition!! The cardiologist seemed shocked, & as much much as I knew he wouldn't say it because of it always needing to be on a medical stand point, it is a miracle!
He told us that his first surgery would more than likely be put off till he is a little older but that they wont know for sure until the next echo when he is a little bigger & that this ups the chances of both us & our kids not only being able to see him when he is born but possibly being able to hold him briefly before he is sent off for testing!! YAY!!! What a relief! Then I remembered about the hole in his heart that they had pointed out during he echo. I said "so will you need to fix that & is that a whole other procedure?" & he said "Actually that hole is in the perfect location, it is the only reason the right ventricle is able to get any sort of blood flow, so if there wasn't a hole there we would create one during surgery." How amazing is that? That a hole in my baby's heart is in fact a blessing! So we got all of our questions answered & the head nurse said "Well Merry Christmas!!" & oh boy was it! I was so excited but at the exact same time I was so scared of being too excited & then getting my hopes up. But it was just the best feeling to walk out if that hospital in a completely different mood than the last time around.
The whole way home Jason & I talked so much about the power of prayer & positive energy. And anyone that knows Jason & I knows that we are not religious people. We both believe in God & were raised around church but we chose not to be a part of any religion. We both have always prayed daily & have taught our children about God & having positive energy & influences in there lives but we don't believe that we need to be a part of an organized religion to be good people. This situation has made a huge impact on our lives & it is just beginning! This is not just believing in the power of prayer & positive thoughts but actually seeing it at its absolute best! It is so amazing to me! Just this one appointment is a miracle & who knows what more good information we may get later!
I just have to take this moment to thank all my family, friends & people we didn't even know that prayed for us & our sweet baby boy! It helped so much more than you could ever know! I love you all so much!!
This situation has pulled Jason & I together more than I could have ever imagined & it is only the beginning. I have always felt like Jason & I have the most amazing relationship & I have always known that he is my soul mate & felt like it couldn't get any better. But now I have seen a side of him that I had never seen before, a side that I know that no other circumstances in the world would have pulled it out of him. He is the most amazing Man, Husband, & Father in the world & I am so grateful to have him as my best friend & my life long companion! Even though I know that all that we are going through & all that we will be going through is going to be the hardest things we have ever experienced I am ready for it because of having him by my side!
Today is the day we go in for our second Fetal Echo Cardiogram to see more of what is going on with our baby's heart & I am absolutely terrified! Each appointment we seem to hear more news that we don't want to hear & as much as I am trying to stay positive it is so hard! Of course I am hoping & praying that it has changed and that he is okay but I know that cannot happen. I am just really hoping that his condition has somehow improved even if it is just a little bit.
So we get into the echo room & are there for at least a good 30-40 minutes before she gets the Cardiologist to come in and take a look. Once again they start talking medical gibberish to each other & we just wait patiently. The only thing that was said to us was Dr. Menon asked Jason to move closer so he could get a better look & then he said "Look right here, this is where you can actually see the hole in his heart." & that was it then they went back to there gibberish. After being in the room for a little over an hour Dr. Menon hands me a towel & says wash up & meet out in the hall so we go to the conference room & talk. As soon as they walked out I looked at Jason in fear & said "I don't think its good!" He agreed. It just felt like we were in for so much more than we had already thought.
As we went to walk out the door I wanted to run the opposite direction & go home, I had finally gotten myself to a place where I was okay with all the information they had given us before & I didn't know if I could handle anymore! We walked out into the hallway & there stands all the members of the team that had been there the last time, suddenly it was like deja'vu I was absolutely terrified!!! The thought that went through my head as we walked in the room was that they were going to tell us that it was much worse than they had originally thought & that they highly suggest that we terminate that pregnancy...I was panicking I just wanted to go home!
They sat us down & said "Well your baby's condition is different than we had originally thought." Then he started going through a book of heart defects & said "Let me show you what your baby's heart looks like" He flipped through a book for a while full of pictures of heart defects & then he said well there is not a picture of what your baby's heart looks like so let me just draw it for you. I was panicking!!! Out of an entire massive book of heart defects there is not one picture of what we are dealing with??? This could not be good! He started to draw the heart & showed us in his drawing that it was actually the right side of the heart that was small not the left & so I said "So, is it better to have the right side small or the left?" & he said "Oh definitely the right! These circumstances are WAY better than what we had originally thought!" Suddenly a huge weight was lifted off my chest & both Jason & I had a huge sigh of relief! Why couldn't he have said that in the first place? I finally wanted to know more & wasn't scared of it. He said that his right ventricle although small it is still there & able to help out somewhat & that his left ventricle is actually bigger than normal so it kind of makes up for the right side being small. Apparently the left side of the heart is considered the "work horse" of the heart & it pumps blood to the entire body, so having that be small is a big problem. But the right side only pumps blood to the lungs so it isn't nearly as serious of a situation to have it be small as it is with the left. They also told us that the aortic arch & all the valves that they had thought were either not there or under developed were all there & in perfect condition!! The cardiologist seemed shocked, & as much much as I knew he wouldn't say it because of it always needing to be on a medical stand point, it is a miracle!
He told us that his first surgery would more than likely be put off till he is a little older but that they wont know for sure until the next echo when he is a little bigger & that this ups the chances of both us & our kids not only being able to see him when he is born but possibly being able to hold him briefly before he is sent off for testing!! YAY!!! What a relief! Then I remembered about the hole in his heart that they had pointed out during he echo. I said "so will you need to fix that & is that a whole other procedure?" & he said "Actually that hole is in the perfect location, it is the only reason the right ventricle is able to get any sort of blood flow, so if there wasn't a hole there we would create one during surgery." How amazing is that? That a hole in my baby's heart is in fact a blessing! So we got all of our questions answered & the head nurse said "Well Merry Christmas!!" & oh boy was it! I was so excited but at the exact same time I was so scared of being too excited & then getting my hopes up. But it was just the best feeling to walk out if that hospital in a completely different mood than the last time around.
The whole way home Jason & I talked so much about the power of prayer & positive energy. And anyone that knows Jason & I knows that we are not religious people. We both believe in God & were raised around church but we chose not to be a part of any religion. We both have always prayed daily & have taught our children about God & having positive energy & influences in there lives but we don't believe that we need to be a part of an organized religion to be good people. This situation has made a huge impact on our lives & it is just beginning! This is not just believing in the power of prayer & positive thoughts but actually seeing it at its absolute best! It is so amazing to me! Just this one appointment is a miracle & who knows what more good information we may get later!
I just have to take this moment to thank all my family, friends & people we didn't even know that prayed for us & our sweet baby boy! It helped so much more than you could ever know! I love you all so much!!
Saturday, February 18, 2012
November 17th finally arrived
We were finally to the day we had waited for 2 weeks. I was having so many mixed feelings, on one hand I was so excited in hopes that it had all changed & everything was going to be amazing from here on out & on the other hand with what if its the same...or worse? Then what? Where would we go from there & can I handle it?
So my Mom came over to watch my girls & we headed up to the hospital. We got all registered & checked in, which took a while. Then sat down in the waiting area for our turn. My stomach was turning in knots, I didn't know what to think. I just wanted it all to be over & go home knowing exactly what was going on (hopefully as positive of course).
The Ultrasound tech took us back in the room & got started. I tried so hard to really look at what she was looking at. But at that time not much of it made sense. She said "Well it looks like the heart is on the right side of the chest"......& my heart sank! All these questions started rushing through my head, Does his mean that everything with his heart was the same as before? Why would it be on the right side? What causes that? What does this mean? Is just that it is on the right side but its a normal healthy heart??? I knew these were all things that she couldn't answer so I didn't ask I just watched & waited while I tried to fight back the tears. About 15 minutes later she said that she was going to show these pictures to her doctor & she would be back. So Jason & I sat in the room & waited.... Jason said "when she was zooming in on the heart it looked to me like there were 3 chambers, so that gives me some hope" Him & I talked back and forth about what we thought but obviously not knowing a thing. Both of us in fear that we would be going home still not knowing anything until our appointment in the morning. Then the tech came back in, this time with the doctor. The doctor said "It looks like your baby has a very rare condition called Heterotaxy, which means some of his organs are mirror images of themselves or mirror images of where they are supposed to be. Both his stomach & heart are on the right side of his body when they are supposed to be on the left. Other organs that are usually effected by Heterotaxy are the lungs, kidneys & spleen. As far as we can tell they are all okay but at this point in pregnancy it is hard to really say because everything is so small, some things we just wont know for sure until he is born." We said so other than his heart being on the right side is it okay? & she said "You will have to get further evaluation on his heart over at Primary Children's, they are the only facility that has the equipment to do a fetal echo cardiogram & that is what you will need done to know the whole extent of what is going on with his heart. From there you will meet with surgeons to go over what all will happen when he is born. We will get you an appointment there tomorrow before you meet with Dr. Manuck."
I was screaming inside!!!!! I had so many things rushing through my head. I just wished I could wake up from this horrible nightmare! The words she said kept going through my head over & over..."from there you will meet with surgeons" what does this mean? My baby is going to have to have heart surgery? How serious is it? Is my baby going to survive? I was trying not to make myself crazy but how could I not? I just wanted the tech & the doctor to leave so I could lay on the bed & just cry. Jason came over & helped me up & we walked out together just clenching each others hands as we walked. It was exactly what we had feared & maybe worse. I was shaking & I couldn't say a word knowing that if I opened my mouth, all that would come out is cries. I just wanted to go home & be left alone. The drive home was hard, neither of us could say a word, we both were so shocked & with still not knowing everything that we were up against we were numb & terrified of what more we would find out the next day.
We got home & of course I got right on the internet & started searching Heterotaxy. I was surprised at how much I found. It said that it is more common in boys than girls & that it is not something that comes from genetics, it happens randomly to 4 in every 1 million babies & that it usually comes with some sort (or many sorts) of heart defects. I found so many stories of families that had gone through the same thing, some were so comforting and others I just cried the entire time I read it. After a while I knew I needed to get off the computer or I would drive myself crazy with all the what if's & questions. At that point I started getting lots of phone calls from my close friends & family that I know care so much & wanted to know how it went, but I knew I couldn't do it, I couldn't talk to anyone it would make it way harder than it already was.
The next morning we headed up to Primary Children's Hospital. Just walking through that door was such a surreal feeling! It's the type of place that you have to be SO grateful for but at the same time pray that you never have to go inside. It was amazing seeing all the sweet babies & children going though so much & still having smiles on there faces & positive attitudes, it gave me some hope. We sat in the waiting area & a woman walked in with her arms so full, she was pushing her stroller with one hand, & a baby in the other. The baby had a breathing tube in her nose & an oxygen tank strapped to the stroller. She came & sat down by us & my heart just ached for her! She seemed so exhausted & doing it all on her own, I just couldn't even imagine! It made me so incredibly grateful for my husband, knowing that he was by side no matter what & I would never have to be alone in any of this. We were watching this beautiful baby girl, she was probably 6-9 months old & she was so adorable, the Mom was talking to her & she was talking back. Jason said to me "She reminds me so much of Addi" & she did, she looked so much like our sweet little girl so of course that made it even harder to see how much she was going through. Just before we got called to our appointment the Mom went to adjust the baby girl's shirt & I saw the staples that closed up a huge incision down this sweet baby's chest obviously from a heart surgery. Tears just started rushing down my cheeks uncontrollably, knowing that not only our baby would probably need the same thing but seeing a little girl that was just like our little Addi with that type of an incision on her chest just really gave me a good reality check as to what we may be in for.
The nurse took us back into the Echo room & got started. She was very quiet & just got right to work. She told us that we would be able to meet with the Cardiologist after she was done with us so that we would get all of our questions answered. After about 40 minutes she went & got Dr. Menon (the Cardiologist) to come take a look. He came in and they spoke medical gibberish back & forth for a while, nothing that made any sense to either of us & then after about an hour they said that they would meet us in the conference room.
We walked into the conference room & there is a whole team of people & nurses there waiting for us. We sat down and the cardiologist sat down right in front of us. He took a deep breath & said "Well, to start... your baby has a very rare condition called Heterotaxy that usually comes with some pretty serious heart defects, for starters lets me show you what a normal heart looks like." So he showed us a normal heart & how it is supposed to function then he started to pull out numerous charts, he put all the charts in front of us & started pointing out things on these charts of everything that was wrong our baby's heart. The main things that he pointed out was that our baby's left ventricle was extremely small almost non existent this is called Hypoplastic Left Heart Syndrome a very serious heart defect & that his aortic arch was under developed but that they couldn't tell just yet how under developed it actually was. He said "Your baby's quality of life may not be very good with this heart condition & the only way he would survive at all would be with a series of 3 heart surgeries. The first at 1-7 days old, the second at 4-6 months old & the third at 3-4 years old, after these heart surgeries we still cannot say how well off he would be & weather or not his heart could carry him into adulthood or even teenage years." I asked him what the chances of survival are? he said "With just the heart condition that he is dealing with I would say maybe 70% chance of survival, but then you throw the Heterotaxy in the mix & that would drop it down to maybe 60%" I didn't know what to say! Jason & I just sat on the couch listening to all of this clenching each others hand just praying that the bad news would stop! But it didn't. I wanted to ask so much but I was terrified of the answer he would give! He then said "I'm sorry to put this all on you both but a decision on what is going to be done needs to be made soon." So he told us we have 3 options: 1-to terminate the pregnancy (which he highly recommends) 2-to proceed with the pregnancy with no surgeries (0% of survival) or 3-to continue with the pregnancy, set up the surgeries and prepare ourselves for a long hard road. Automatically both Jason & I said "We want to continue with the pregnancy & prepare for the surgeries!" I was so proud of both of us & the relationship that we have together that we didn't have to stop & think about it or even look at each other before we both made the exact same decision! There was no doubt in either of our minds that terminating the pregnancy was not an option.
From there he said "As much as I like your decision I have to let you know that it is going to be an extremely hard one because as much as I am sure you hope it will change this WILL NOT CHANGE! The human heart is developed in the early embryo stages of pregnancy & whats done is done. I know a lot of people think that prayer or positive thoughts are going to change it all, but from a medical stand point its just not possible! I'm sorry to tell you that but it is just the facts! So if you still chose to proceed with the pregnancy just be aware that it will be the hardest thing you will ever experience & you will need a ton of help from friends & family!" Then he asked "Do you have other children?" & we told him we have to little girls together & Jason's two boys every other week, so exactly 50% of the time. He said "Are you close to your families?" & Thank goodness we could tell him yes we are extremely close to both of our families! He said "Good, because you will need them now more than ever, especially for your older children needs because I can promise you, you both will want to be up here with your baby as much as possible." He also asked about both our jobs & again we were grateful to say that neither of us have high demanding jobs that we have to be there specific hours. He told me that the chances of me being able to work with a baby in these circumstances are unheard of so to not plan on it.
After being in there for quite some time & speaking with both Dr. Menon & the team of nurses we found out so much overwhelming information. There are so many variations of our baby's condition that they were unable to give us an average lifespan for our baby, but they did say that a lot of it depends on weather or not he has a spleen (spleens are too small to be able to tell until he is born if he has one or not). Sometimes with this condition the baby is born with either no spleen or multiple tiny spleens that are in most cases, pretty much useless. Without a spleen he would have no immune system, therefore he would have to take an antibiotic everyday for the rest of his life. Also, a spleen makes a huge difference in how he heals from these surgeries & factors in a lot of other things down the road like weather or not he would be eligible for a heart transplant because he said they cannot do any transplants without a spleen. Another big factor in this condition is the fact that his stomach is on the wrong side of his body, this can make the intestines twist around themselves making it so he would have to have stomach surgery soon after birth to fix it. He said there are many people out there that live completely normal lives with Heterotaxy & some that don't even know that they have it. It just depends so much on how the organs are all placed & weather or not everything is there.
Before they left the room he gave us a list of all the things that our baby was dealing with, the list was so overwhelming & absolutely heart breaking! It had at least 10 major things that they either knew for sure were wrong or that they were still questioning weather or not it is wrong. I sat there holding the list as he asked if I had any other questions....what could I say? Of course I had other questions, I had a million! I just wanted to know everything now & what the end result of it all would be. The head nurse coordinator handed us a box of tissues & said I'm so sorry that we didn't have better news for you both, we will leave you alone, feel free to stay in this room as long as you need.
As soon as she shut the door I laid in Jason's arms & lost it completely! I felt like I was gasping for breath....How could this be happening to us? This is the sort of thing that you hear about but not ever have to experience in your own family, let alone your very own baby...I had so many mixed emotions I couldn't do anything but cry, but I knew we needed to get over to the U for our appointment with them that we were already late for.
So from there we were sent back to the U where I was told we had to find a new OB because we would have to deliver at the U where they specialize in high risk pregnancies. Thankfully we found one named Tracey Manuck that was so helpful, sweet & very honest with the facts & what we have to prepare ourselves for. She went over everything with us that she could at that time. We will be delivering at the U of U hospital where we will be in a "High Risk" delivery room that is linked to the NICU by a window, so as soon as he is born they will send him straight through the window to the NICU to have an IV through his umbilical cord to provide his nutrients & to keep his PDA vessel open, then he will have numerous tests done to find out all the ins and outs of his condition. From there it all depends on how everything looks as far as how long he will stay in the hospital & what surgeries will need to be lined up for him. There were three huge things said in this conversation that really stood out to me- One was that our older children would not be able to see him (besides in pictures or video) until he is sent home from the hospital which could potentially be around 3 months old. All I could think was "How am I going to tell my sweet Braylee that she has to wait for an extra 3 months to see her baby brother that she has anticipated for long before we even got pregnant with him? She is going to be devastated!" 2- That the chances of me being able to hold him would be slim to none, that in most cases the baby comes out, the doctor holds up the baby so the Mom & Dad can see him & then sends him straight through the window to the NICU & that I would not be able to nurse him until he came home (again around 3 months old) & 3- That we need to mentally prepare ourselves for the possibility of having a still born, that the chances are pretty high of him having heart failure before the labor is over or in some cases before the pregnancy is even close to over. She said I hate to tell you these things but they are things that you as the parents have to be aware of so that if it does happen you are as prepared as you can be.
The last thing she had talked about was that there is a test to be able to tell weather or not our baby's heart condition is from genetics or if it was just random, she said it is an amniocentesis test where they put a needle into my stomach to pull out some amniotic fluid so it can be tested. I asked her if there were any risks with having this test done & she said "well yes there are risks such as the needle breaking the sack which would force you into pre-term labor, but the chances of that are very low" Jason said "how low" & she said "about a 1 in 400 chance of having that happen" Jason got a little defensive & said "Well the condition our baby is dealing with right now has a 4 in 1 million odds so I think the odds are against us right now & we are just not willing to take that risk!" I was so happy that he spoke up on that one, because it was so true & he worded it just perfectly, obviously the odds are against us right now so we will try our best to take every precaution possible!
By the time we were home I think both of us were so mentally & emotionally drained & exhausted. My Mom stayed at my house after we got there for some time so I could have some time to myself, she was really sweet to not ask too many questions knowing that it was just to much to handle at that time. Once again my heart ached for my sweet little girls, they just didn't understand why Mommy was crying so much, yet they were both so sweet, loving, & understanding through it all. As much as I wanted to sit them down & tell them what was going on, I wanted to tell all four of our kids at the same time & even then how do we start & how do we explain it all to children??
The next morning I was up really early looking through my phone & just feeling horrible that I had ignored so many calls & texts from my close friends & family. I knew that they were all so worried & wanting to know what was going on & to let us know that they cared. I really wanted to let them know what was going on but how? I knew that if I even picked up the phone & thought about the words I needed to say no words would come out, only tears. It was just to hard to talk about so I decided to start an email. Needless to say it was the hardest email I had ever written, it took so long because I had to walk away from it at least 5 times, but once it was done it was so worth it knowing that everyone that cared about us knew what was going on & they could let us know their thoughts & feelings through email so that there were no words necessary.
So from here the U of U hospital has set us up on every two week appointments so that they can monitor him closely. They said as soon as I hit 30 weeks along I will have multiple appointments each week. Then at Primary Children's they set us up an appointment for December 19th to get another fetal echo cardiogram & consultation with the cardiologist so our baby can grow bigger & they can see everything with his heart a little better. Hopefully we will know more then.
So my Mom came over to watch my girls & we headed up to the hospital. We got all registered & checked in, which took a while. Then sat down in the waiting area for our turn. My stomach was turning in knots, I didn't know what to think. I just wanted it all to be over & go home knowing exactly what was going on (hopefully as positive of course).
The Ultrasound tech took us back in the room & got started. I tried so hard to really look at what she was looking at. But at that time not much of it made sense. She said "Well it looks like the heart is on the right side of the chest"......& my heart sank! All these questions started rushing through my head, Does his mean that everything with his heart was the same as before? Why would it be on the right side? What causes that? What does this mean? Is just that it is on the right side but its a normal healthy heart??? I knew these were all things that she couldn't answer so I didn't ask I just watched & waited while I tried to fight back the tears. About 15 minutes later she said that she was going to show these pictures to her doctor & she would be back. So Jason & I sat in the room & waited.... Jason said "when she was zooming in on the heart it looked to me like there were 3 chambers, so that gives me some hope" Him & I talked back and forth about what we thought but obviously not knowing a thing. Both of us in fear that we would be going home still not knowing anything until our appointment in the morning. Then the tech came back in, this time with the doctor. The doctor said "It looks like your baby has a very rare condition called Heterotaxy, which means some of his organs are mirror images of themselves or mirror images of where they are supposed to be. Both his stomach & heart are on the right side of his body when they are supposed to be on the left. Other organs that are usually effected by Heterotaxy are the lungs, kidneys & spleen. As far as we can tell they are all okay but at this point in pregnancy it is hard to really say because everything is so small, some things we just wont know for sure until he is born." We said so other than his heart being on the right side is it okay? & she said "You will have to get further evaluation on his heart over at Primary Children's, they are the only facility that has the equipment to do a fetal echo cardiogram & that is what you will need done to know the whole extent of what is going on with his heart. From there you will meet with surgeons to go over what all will happen when he is born. We will get you an appointment there tomorrow before you meet with Dr. Manuck."
I was screaming inside!!!!! I had so many things rushing through my head. I just wished I could wake up from this horrible nightmare! The words she said kept going through my head over & over..."from there you will meet with surgeons" what does this mean? My baby is going to have to have heart surgery? How serious is it? Is my baby going to survive? I was trying not to make myself crazy but how could I not? I just wanted the tech & the doctor to leave so I could lay on the bed & just cry. Jason came over & helped me up & we walked out together just clenching each others hands as we walked. It was exactly what we had feared & maybe worse. I was shaking & I couldn't say a word knowing that if I opened my mouth, all that would come out is cries. I just wanted to go home & be left alone. The drive home was hard, neither of us could say a word, we both were so shocked & with still not knowing everything that we were up against we were numb & terrified of what more we would find out the next day.
We got home & of course I got right on the internet & started searching Heterotaxy. I was surprised at how much I found. It said that it is more common in boys than girls & that it is not something that comes from genetics, it happens randomly to 4 in every 1 million babies & that it usually comes with some sort (or many sorts) of heart defects. I found so many stories of families that had gone through the same thing, some were so comforting and others I just cried the entire time I read it. After a while I knew I needed to get off the computer or I would drive myself crazy with all the what if's & questions. At that point I started getting lots of phone calls from my close friends & family that I know care so much & wanted to know how it went, but I knew I couldn't do it, I couldn't talk to anyone it would make it way harder than it already was.
The next morning we headed up to Primary Children's Hospital. Just walking through that door was such a surreal feeling! It's the type of place that you have to be SO grateful for but at the same time pray that you never have to go inside. It was amazing seeing all the sweet babies & children going though so much & still having smiles on there faces & positive attitudes, it gave me some hope. We sat in the waiting area & a woman walked in with her arms so full, she was pushing her stroller with one hand, & a baby in the other. The baby had a breathing tube in her nose & an oxygen tank strapped to the stroller. She came & sat down by us & my heart just ached for her! She seemed so exhausted & doing it all on her own, I just couldn't even imagine! It made me so incredibly grateful for my husband, knowing that he was by side no matter what & I would never have to be alone in any of this. We were watching this beautiful baby girl, she was probably 6-9 months old & she was so adorable, the Mom was talking to her & she was talking back. Jason said to me "She reminds me so much of Addi" & she did, she looked so much like our sweet little girl so of course that made it even harder to see how much she was going through. Just before we got called to our appointment the Mom went to adjust the baby girl's shirt & I saw the staples that closed up a huge incision down this sweet baby's chest obviously from a heart surgery. Tears just started rushing down my cheeks uncontrollably, knowing that not only our baby would probably need the same thing but seeing a little girl that was just like our little Addi with that type of an incision on her chest just really gave me a good reality check as to what we may be in for.
The nurse took us back into the Echo room & got started. She was very quiet & just got right to work. She told us that we would be able to meet with the Cardiologist after she was done with us so that we would get all of our questions answered. After about 40 minutes she went & got Dr. Menon (the Cardiologist) to come take a look. He came in and they spoke medical gibberish back & forth for a while, nothing that made any sense to either of us & then after about an hour they said that they would meet us in the conference room.
We walked into the conference room & there is a whole team of people & nurses there waiting for us. We sat down and the cardiologist sat down right in front of us. He took a deep breath & said "Well, to start... your baby has a very rare condition called Heterotaxy that usually comes with some pretty serious heart defects, for starters lets me show you what a normal heart looks like." So he showed us a normal heart & how it is supposed to function then he started to pull out numerous charts, he put all the charts in front of us & started pointing out things on these charts of everything that was wrong our baby's heart. The main things that he pointed out was that our baby's left ventricle was extremely small almost non existent this is called Hypoplastic Left Heart Syndrome a very serious heart defect & that his aortic arch was under developed but that they couldn't tell just yet how under developed it actually was. He said "Your baby's quality of life may not be very good with this heart condition & the only way he would survive at all would be with a series of 3 heart surgeries. The first at 1-7 days old, the second at 4-6 months old & the third at 3-4 years old, after these heart surgeries we still cannot say how well off he would be & weather or not his heart could carry him into adulthood or even teenage years." I asked him what the chances of survival are? he said "With just the heart condition that he is dealing with I would say maybe 70% chance of survival, but then you throw the Heterotaxy in the mix & that would drop it down to maybe 60%" I didn't know what to say! Jason & I just sat on the couch listening to all of this clenching each others hand just praying that the bad news would stop! But it didn't. I wanted to ask so much but I was terrified of the answer he would give! He then said "I'm sorry to put this all on you both but a decision on what is going to be done needs to be made soon." So he told us we have 3 options: 1-to terminate the pregnancy (which he highly recommends) 2-to proceed with the pregnancy with no surgeries (0% of survival) or 3-to continue with the pregnancy, set up the surgeries and prepare ourselves for a long hard road. Automatically both Jason & I said "We want to continue with the pregnancy & prepare for the surgeries!" I was so proud of both of us & the relationship that we have together that we didn't have to stop & think about it or even look at each other before we both made the exact same decision! There was no doubt in either of our minds that terminating the pregnancy was not an option.
From there he said "As much as I like your decision I have to let you know that it is going to be an extremely hard one because as much as I am sure you hope it will change this WILL NOT CHANGE! The human heart is developed in the early embryo stages of pregnancy & whats done is done. I know a lot of people think that prayer or positive thoughts are going to change it all, but from a medical stand point its just not possible! I'm sorry to tell you that but it is just the facts! So if you still chose to proceed with the pregnancy just be aware that it will be the hardest thing you will ever experience & you will need a ton of help from friends & family!" Then he asked "Do you have other children?" & we told him we have to little girls together & Jason's two boys every other week, so exactly 50% of the time. He said "Are you close to your families?" & Thank goodness we could tell him yes we are extremely close to both of our families! He said "Good, because you will need them now more than ever, especially for your older children needs because I can promise you, you both will want to be up here with your baby as much as possible." He also asked about both our jobs & again we were grateful to say that neither of us have high demanding jobs that we have to be there specific hours. He told me that the chances of me being able to work with a baby in these circumstances are unheard of so to not plan on it.
After being in there for quite some time & speaking with both Dr. Menon & the team of nurses we found out so much overwhelming information. There are so many variations of our baby's condition that they were unable to give us an average lifespan for our baby, but they did say that a lot of it depends on weather or not he has a spleen (spleens are too small to be able to tell until he is born if he has one or not). Sometimes with this condition the baby is born with either no spleen or multiple tiny spleens that are in most cases, pretty much useless. Without a spleen he would have no immune system, therefore he would have to take an antibiotic everyday for the rest of his life. Also, a spleen makes a huge difference in how he heals from these surgeries & factors in a lot of other things down the road like weather or not he would be eligible for a heart transplant because he said they cannot do any transplants without a spleen. Another big factor in this condition is the fact that his stomach is on the wrong side of his body, this can make the intestines twist around themselves making it so he would have to have stomach surgery soon after birth to fix it. He said there are many people out there that live completely normal lives with Heterotaxy & some that don't even know that they have it. It just depends so much on how the organs are all placed & weather or not everything is there.
Before they left the room he gave us a list of all the things that our baby was dealing with, the list was so overwhelming & absolutely heart breaking! It had at least 10 major things that they either knew for sure were wrong or that they were still questioning weather or not it is wrong. I sat there holding the list as he asked if I had any other questions....what could I say? Of course I had other questions, I had a million! I just wanted to know everything now & what the end result of it all would be. The head nurse coordinator handed us a box of tissues & said I'm so sorry that we didn't have better news for you both, we will leave you alone, feel free to stay in this room as long as you need.
As soon as she shut the door I laid in Jason's arms & lost it completely! I felt like I was gasping for breath....How could this be happening to us? This is the sort of thing that you hear about but not ever have to experience in your own family, let alone your very own baby...I had so many mixed emotions I couldn't do anything but cry, but I knew we needed to get over to the U for our appointment with them that we were already late for.
So from there we were sent back to the U where I was told we had to find a new OB because we would have to deliver at the U where they specialize in high risk pregnancies. Thankfully we found one named Tracey Manuck that was so helpful, sweet & very honest with the facts & what we have to prepare ourselves for. She went over everything with us that she could at that time. We will be delivering at the U of U hospital where we will be in a "High Risk" delivery room that is linked to the NICU by a window, so as soon as he is born they will send him straight through the window to the NICU to have an IV through his umbilical cord to provide his nutrients & to keep his PDA vessel open, then he will have numerous tests done to find out all the ins and outs of his condition. From there it all depends on how everything looks as far as how long he will stay in the hospital & what surgeries will need to be lined up for him. There were three huge things said in this conversation that really stood out to me- One was that our older children would not be able to see him (besides in pictures or video) until he is sent home from the hospital which could potentially be around 3 months old. All I could think was "How am I going to tell my sweet Braylee that she has to wait for an extra 3 months to see her baby brother that she has anticipated for long before we even got pregnant with him? She is going to be devastated!" 2- That the chances of me being able to hold him would be slim to none, that in most cases the baby comes out, the doctor holds up the baby so the Mom & Dad can see him & then sends him straight through the window to the NICU & that I would not be able to nurse him until he came home (again around 3 months old) & 3- That we need to mentally prepare ourselves for the possibility of having a still born, that the chances are pretty high of him having heart failure before the labor is over or in some cases before the pregnancy is even close to over. She said I hate to tell you these things but they are things that you as the parents have to be aware of so that if it does happen you are as prepared as you can be.
The last thing she had talked about was that there is a test to be able to tell weather or not our baby's heart condition is from genetics or if it was just random, she said it is an amniocentesis test where they put a needle into my stomach to pull out some amniotic fluid so it can be tested. I asked her if there were any risks with having this test done & she said "well yes there are risks such as the needle breaking the sack which would force you into pre-term labor, but the chances of that are very low" Jason said "how low" & she said "about a 1 in 400 chance of having that happen" Jason got a little defensive & said "Well the condition our baby is dealing with right now has a 4 in 1 million odds so I think the odds are against us right now & we are just not willing to take that risk!" I was so happy that he spoke up on that one, because it was so true & he worded it just perfectly, obviously the odds are against us right now so we will try our best to take every precaution possible!
By the time we were home I think both of us were so mentally & emotionally drained & exhausted. My Mom stayed at my house after we got there for some time so I could have some time to myself, she was really sweet to not ask too many questions knowing that it was just to much to handle at that time. Once again my heart ached for my sweet little girls, they just didn't understand why Mommy was crying so much, yet they were both so sweet, loving, & understanding through it all. As much as I wanted to sit them down & tell them what was going on, I wanted to tell all four of our kids at the same time & even then how do we start & how do we explain it all to children??
The next morning I was up really early looking through my phone & just feeling horrible that I had ignored so many calls & texts from my close friends & family. I knew that they were all so worried & wanting to know what was going on & to let us know that they cared. I really wanted to let them know what was going on but how? I knew that if I even picked up the phone & thought about the words I needed to say no words would come out, only tears. It was just to hard to talk about so I decided to start an email. Needless to say it was the hardest email I had ever written, it took so long because I had to walk away from it at least 5 times, but once it was done it was so worth it knowing that everyone that cared about us knew what was going on & they could let us know their thoughts & feelings through email so that there were no words necessary.
So from here the U of U hospital has set us up on every two week appointments so that they can monitor him closely. They said as soon as I hit 30 weeks along I will have multiple appointments each week. Then at Primary Children's they set us up an appointment for December 19th to get another fetal echo cardiogram & consultation with the cardiologist so our baby can grow bigger & they can see everything with his heart a little better. Hopefully we will know more then.
Monday, February 13, 2012
The Beginning....
From the beginning of this pregnancy I felt like something was a little different...Maybe a little special! Then once we found out we were having a BOY I figured that's what the "different kinda special" feeling was all about. At about 15 1/2 weeks along (at Braylee's Birthday party to be exact) I could already feel our sweet baby boy move! He is an active one that's for sure!!
On November 3rd we went in to the Doctor to get the usual 20 week ultrasound done where they check all the organs, fingers & toes, etc. The night before I had said to Jason "I am super excited about our appointment tomorrow but I feel a little nervous too" & I had never felt that way before with my other pregnancies, but I tried to not let it bother me.
So My girls & I got to the hospital a little before Jason did so the ultrasound tech was just looking at all the "fun" things for the girls. They thought it was the neatest thing ever to see their baby brother & when they saw him yawn they were both SO excited & wanted their very own picture of it. Once Jason got there she went over everything making sure it was all good & she made sure he was still a boy. She had told the girls that they had a perfect little baby brother & she couldn't believe how active he was. During all of this each time she went to look at his heart she said he was in a weird position & she couldn't see it clearly so she said she would come back to it when he moves a little, but never seemed worried about it at all. She continued to look at everything printing out picture after picture that were all just adorable! He was moving all over the place & giving us the perfect little photo shoot, my girls loved every second of it! By the end she had me get up & walk around in hopes that he would move into a better position for her to thoroughly look at his heart, so I did. When I came back she was no longer in the room & I started feeling a little nervous about it. When she came back in the room she looked sick, but she didn't say anything, sat down & tried to look at our baby's heart again. She tried for a little bit longer, then she took a deep breath & said "I am really sorry guys, but I have have to tell you something- There is something wrong with your baby's heart...I thought it was just because he was in a weird position but it has nothing to do with his position....All I can see is 2 chambers of his heart & a normal heart has 4 chambers.....I'm really sorry, I don't know what else to say. Everything else looks perfect!" I was in shock....I can't even begin to describe the feelings that were rushing through my body. As I fought back the tears, I said to her "can someone live with only 2 chambers?" & she got really teary eyed & said "I really don't know, I'm so sorry! You will need to talk to Dr. Nippert (my OB) about the details" I laid there not knowing what to to say or do! I wanted to tell her she had to be wrong & to please look again but I knew that wasn't going to do any good. She then said "I called Dr. Nippert when you had walked around & she said she will call you later today to talk to you about the details. Until then we will be working our hardest on getting you set up at the University Hospital for a level 2 ultrasound & a fetal echo cardiogram as soon as we can."
We walked out of there just feeling numb. I couldn't even speak. I was holding the new ultrasound pictures that she had given us & I folded them & put them into my purse, I just couldn't look at them if I wanted to be able to keep myself together for my kids. My poor girls didn't know what was going on, everything was so happy & exciting & then suddenly it just wasn't anymore. My heart was aching for them, I hated that they had to be there to feel all the emotions & stresses that were rushing through all of us at that moment.
As soon as we walked into the elevator Jason wrapped his arms around me & I lost it! I was trying so hard to hold it in for my girls sake but I just couldn't. I felt like I couldn't breathe! We walked out to the car, the girls & I had driven separately so Jason walked us to my car. As I buckled Addi into her car seat, trying my hardest to hold myself together, Jason asked me if I was okay to drive, now that I know better I probably shouldn't have. He stood by my door with me for a while & held me tight, there were no words that we could say to each other that could help the fears, questions & pain to go away....Tears just rushed down my cheeks uncontrollably. As soon as Jason walked away & I closed my door I just laid my head on my steering wheel & sobbed. I will never forget looking up for just a moment & seeing my sweet Braylee's face in the rear view mirror looking back at me with so much sadness & hurt in her eyes not knowing what was going on but didn't dare to ask. She just said to me "I love you Mommy!" in the sweetest little voice. She is the sweetest little thing, I don't know what I would do without her! I tried my hardest to pull myself together so I could drive us home, but I knew I needed to talk to someone. I called my Mom, It took me probably a good 30 seconds after she answered her phone for me to get the words out...I just said through my tears "My baby only has two chambers of his heart, Mom...can someone live with only two chambers???" My poor Mom had no idea what was going on & I don't think that she could even begin to understand what I was saying because there was so much more crying than words. She said everything she could to comfort me & to try to make me feel better but I just had to get off the phone, talking about it was just making it so much worse.
When I got home I went straight to my computer & started googling everything possible about hearts with 2 chambers. My sweet Braylee came & climbed up on my lap, wrapped her arms around me & said "Mommy, is there something wrong with our baby?" With tears rushing down my cheeks, I said "I don't know yet sweetie, I wish I did" & she said "Don't cry Mama, I love you so much!" Then she just sat on my lap with her arms around me as I cried & looked up stuff on the computer, it was like she wanted to make sure I knew she was there to comfort me no matter what. I don't know how I would have survived that time without that sweet girl! I love her so much!
Jason got home a little later & we both looked up everything possible, there were so many stories that gave us hope then there were so many more that made our fears worse. It was such a catch 22 because I wanted to know info about it all yet it terrified me at the same time. There were so many stories of parents that got there 20 week ultrasound & the tech told them their baby had less than 4 chambers & then they went back in later & everything looked great, so that was my hope was that the ultrasound tech was wrong & that we just need to get another appointment so we could know for sure.
After hours of all the questions eating us alive, my O.B. Finally called at about 7pm that night. I guess she had been in deliveries all day & couldn't get to the phone. She confirmed all that the ultrasound tech had told me, she also said that it looks like my baby's heart is on the right side of his chest which is something called dextrocardia & that the U of U Hospital is the only place that has the right equipment to figure out exactly what is going on so they were trying their hardest to get us an appointment as soon as possible. She wanted us to come into her clinic the next day to do further testing to make sure there weren't other things going on such as down syndrome & then hopefully we could get an appointment up at the U right after so we could know exactly what was going on before the weekend.
As much as I had looked forward to her call I felt worse after I had spoke with her. Knowing that there was something else wrong that we didn't know about before when we were looking stuff up made me have no more hope from the stories that sounded like our same circumstances because now ours had completely changed & was now different than everyone else. Automatically we started looking up dextrocardia & trying to find out everything there was to know about it. Turns out there was a lot of cases of it where the person's heart was on the right side of the chest but it was a perfectly healthy heart & they seemed to live a normal healthy life. The only problem was that I wasn't seeing anything about a heart with both dextrocardia & 2 chambers. I was feeling so helpless & just wanting answers so badly!
During this time we had so many family members calling wanting to know what was going on & letting us know that they love us & will be praying for our sweet baby. Even if it was just a text from someone it helped so much just to know that everyone cared so much. Specifically Jason's sister Tisha was amazing! I honestly don't know what I would have done without her! She was all the way in Montana looking up stuff & sending it to us, trying her hardest to be there for us to give us as much hope as possible. We are so blessed to have so many amazing people in our lives that care so much!
The next morning my Mom came over to stay with my girls while we went to the doctor. We still hadn't heard anything from the U about an appointment but we headed to Jordan Valley to see Dr. Nippert for further tests. While there they took 8 tubes of my blood to send off for testing to make sure we weren't dealing with anything else. They told us that they still hadn't gotten us an appointment up at the U of U but that they were trying but to not count on getting in today. So when we left I was feeling extremely emotional & frustrated, I just really wanted to know what was going on, so I started calling the U of U Hospital myself.
After being transferred around for hours & sent back & forth between Primary Children's & the U of U hospital, I finally got a call back around 5pm. They told me that I had an appointment set up for November 17th (two weeks away) for an in-depth ultra sound & another one on the 18th to meet with a Dr. Manuck (A high risk O.B) to go over the results of the ultra sound. They told me that the ultrasound tech would not be able to tell me anything about the results, that we would need to wait until the appointment with Dr. Manuck for the details. She apologized that she couldn't get us in any sooner, but that anyone that needs a level 2 ultrasound in there facility is considered an emergency & there are so many that you just have to wait your turn. So as much as I hated the idea of waiting 2 weeks, I understood.
At this point Jason & I have both decided that maybe waiting these two weeks would be good, that it may give our sweet Ryker just enough time to get all healthy & perfect so the doctors can tell us there is nothing wrong. So as of that moment we decided that we would try our hardest to live our lives the way we were before we had found out so that we could just survive these 2 weeks. And when the 17th arrives we will face the info we receive the very best we can. But, I can't help but get on the internet, look up every "heart healthy" food there is, go buy it all & make sure I was eating as much of it as I could so my baby had every nutrient possible to get as healthy as possible before our next appointment. :)
On November 3rd we went in to the Doctor to get the usual 20 week ultrasound done where they check all the organs, fingers & toes, etc. The night before I had said to Jason "I am super excited about our appointment tomorrow but I feel a little nervous too" & I had never felt that way before with my other pregnancies, but I tried to not let it bother me.
So My girls & I got to the hospital a little before Jason did so the ultrasound tech was just looking at all the "fun" things for the girls. They thought it was the neatest thing ever to see their baby brother & when they saw him yawn they were both SO excited & wanted their very own picture of it. Once Jason got there she went over everything making sure it was all good & she made sure he was still a boy. She had told the girls that they had a perfect little baby brother & she couldn't believe how active he was. During all of this each time she went to look at his heart she said he was in a weird position & she couldn't see it clearly so she said she would come back to it when he moves a little, but never seemed worried about it at all. She continued to look at everything printing out picture after picture that were all just adorable! He was moving all over the place & giving us the perfect little photo shoot, my girls loved every second of it! By the end she had me get up & walk around in hopes that he would move into a better position for her to thoroughly look at his heart, so I did. When I came back she was no longer in the room & I started feeling a little nervous about it. When she came back in the room she looked sick, but she didn't say anything, sat down & tried to look at our baby's heart again. She tried for a little bit longer, then she took a deep breath & said "I am really sorry guys, but I have have to tell you something- There is something wrong with your baby's heart...I thought it was just because he was in a weird position but it has nothing to do with his position....All I can see is 2 chambers of his heart & a normal heart has 4 chambers.....I'm really sorry, I don't know what else to say. Everything else looks perfect!" I was in shock....I can't even begin to describe the feelings that were rushing through my body. As I fought back the tears, I said to her "can someone live with only 2 chambers?" & she got really teary eyed & said "I really don't know, I'm so sorry! You will need to talk to Dr. Nippert (my OB) about the details" I laid there not knowing what to to say or do! I wanted to tell her she had to be wrong & to please look again but I knew that wasn't going to do any good. She then said "I called Dr. Nippert when you had walked around & she said she will call you later today to talk to you about the details. Until then we will be working our hardest on getting you set up at the University Hospital for a level 2 ultrasound & a fetal echo cardiogram as soon as we can."
We walked out of there just feeling numb. I couldn't even speak. I was holding the new ultrasound pictures that she had given us & I folded them & put them into my purse, I just couldn't look at them if I wanted to be able to keep myself together for my kids. My poor girls didn't know what was going on, everything was so happy & exciting & then suddenly it just wasn't anymore. My heart was aching for them, I hated that they had to be there to feel all the emotions & stresses that were rushing through all of us at that moment.
As soon as we walked into the elevator Jason wrapped his arms around me & I lost it! I was trying so hard to hold it in for my girls sake but I just couldn't. I felt like I couldn't breathe! We walked out to the car, the girls & I had driven separately so Jason walked us to my car. As I buckled Addi into her car seat, trying my hardest to hold myself together, Jason asked me if I was okay to drive, now that I know better I probably shouldn't have. He stood by my door with me for a while & held me tight, there were no words that we could say to each other that could help the fears, questions & pain to go away....Tears just rushed down my cheeks uncontrollably. As soon as Jason walked away & I closed my door I just laid my head on my steering wheel & sobbed. I will never forget looking up for just a moment & seeing my sweet Braylee's face in the rear view mirror looking back at me with so much sadness & hurt in her eyes not knowing what was going on but didn't dare to ask. She just said to me "I love you Mommy!" in the sweetest little voice. She is the sweetest little thing, I don't know what I would do without her! I tried my hardest to pull myself together so I could drive us home, but I knew I needed to talk to someone. I called my Mom, It took me probably a good 30 seconds after she answered her phone for me to get the words out...I just said through my tears "My baby only has two chambers of his heart, Mom...can someone live with only two chambers???" My poor Mom had no idea what was going on & I don't think that she could even begin to understand what I was saying because there was so much more crying than words. She said everything she could to comfort me & to try to make me feel better but I just had to get off the phone, talking about it was just making it so much worse.
When I got home I went straight to my computer & started googling everything possible about hearts with 2 chambers. My sweet Braylee came & climbed up on my lap, wrapped her arms around me & said "Mommy, is there something wrong with our baby?" With tears rushing down my cheeks, I said "I don't know yet sweetie, I wish I did" & she said "Don't cry Mama, I love you so much!" Then she just sat on my lap with her arms around me as I cried & looked up stuff on the computer, it was like she wanted to make sure I knew she was there to comfort me no matter what. I don't know how I would have survived that time without that sweet girl! I love her so much!
Jason got home a little later & we both looked up everything possible, there were so many stories that gave us hope then there were so many more that made our fears worse. It was such a catch 22 because I wanted to know info about it all yet it terrified me at the same time. There were so many stories of parents that got there 20 week ultrasound & the tech told them their baby had less than 4 chambers & then they went back in later & everything looked great, so that was my hope was that the ultrasound tech was wrong & that we just need to get another appointment so we could know for sure.
After hours of all the questions eating us alive, my O.B. Finally called at about 7pm that night. I guess she had been in deliveries all day & couldn't get to the phone. She confirmed all that the ultrasound tech had told me, she also said that it looks like my baby's heart is on the right side of his chest which is something called dextrocardia & that the U of U Hospital is the only place that has the right equipment to figure out exactly what is going on so they were trying their hardest to get us an appointment as soon as possible. She wanted us to come into her clinic the next day to do further testing to make sure there weren't other things going on such as down syndrome & then hopefully we could get an appointment up at the U right after so we could know exactly what was going on before the weekend.
As much as I had looked forward to her call I felt worse after I had spoke with her. Knowing that there was something else wrong that we didn't know about before when we were looking stuff up made me have no more hope from the stories that sounded like our same circumstances because now ours had completely changed & was now different than everyone else. Automatically we started looking up dextrocardia & trying to find out everything there was to know about it. Turns out there was a lot of cases of it where the person's heart was on the right side of the chest but it was a perfectly healthy heart & they seemed to live a normal healthy life. The only problem was that I wasn't seeing anything about a heart with both dextrocardia & 2 chambers. I was feeling so helpless & just wanting answers so badly!
During this time we had so many family members calling wanting to know what was going on & letting us know that they love us & will be praying for our sweet baby. Even if it was just a text from someone it helped so much just to know that everyone cared so much. Specifically Jason's sister Tisha was amazing! I honestly don't know what I would have done without her! She was all the way in Montana looking up stuff & sending it to us, trying her hardest to be there for us to give us as much hope as possible. We are so blessed to have so many amazing people in our lives that care so much!
The next morning my Mom came over to stay with my girls while we went to the doctor. We still hadn't heard anything from the U about an appointment but we headed to Jordan Valley to see Dr. Nippert for further tests. While there they took 8 tubes of my blood to send off for testing to make sure we weren't dealing with anything else. They told us that they still hadn't gotten us an appointment up at the U of U but that they were trying but to not count on getting in today. So when we left I was feeling extremely emotional & frustrated, I just really wanted to know what was going on, so I started calling the U of U Hospital myself.
After being transferred around for hours & sent back & forth between Primary Children's & the U of U hospital, I finally got a call back around 5pm. They told me that I had an appointment set up for November 17th (two weeks away) for an in-depth ultra sound & another one on the 18th to meet with a Dr. Manuck (A high risk O.B) to go over the results of the ultra sound. They told me that the ultrasound tech would not be able to tell me anything about the results, that we would need to wait until the appointment with Dr. Manuck for the details. She apologized that she couldn't get us in any sooner, but that anyone that needs a level 2 ultrasound in there facility is considered an emergency & there are so many that you just have to wait your turn. So as much as I hated the idea of waiting 2 weeks, I understood.
At this point Jason & I have both decided that maybe waiting these two weeks would be good, that it may give our sweet Ryker just enough time to get all healthy & perfect so the doctors can tell us there is nothing wrong. So as of that moment we decided that we would try our hardest to live our lives the way we were before we had found out so that we could just survive these 2 weeks. And when the 17th arrives we will face the info we receive the very best we can. But, I can't help but get on the internet, look up every "heart healthy" food there is, go buy it all & make sure I was eating as much of it as I could so my baby had every nutrient possible to get as healthy as possible before our next appointment. :)
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| 20 weeks along. This pic was taken 2 days before this appointment |
Sunday, February 12, 2012
I know.....I am a SLACKER!!!
It has been a year and a half since my last post....And SOoooo much has happened in our lives since then! So instead of trying to catch up (cause that would just be ridiculous!) I will start with one BIG thing that is going on currently in lives....it is the whole reason why I am making time to be back on here....
We are expecting our first baby BOY on March 18th & lets just says its been a crazy ride & he's not even here yet. So let me fill you in on some of the details & a lot & A LOT of feelings.....
We are expecting our first baby BOY on March 18th & lets just says its been a crazy ride & he's not even here yet. So let me fill you in on some of the details & a lot & A LOT of feelings.....
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