Life as we know it - Viner family blog about our journey with Nicholas' heterotaxy/CHD and all the other things too!
|Posted by Sherri Viner on June 9, 2015 at 5:00 AM||comments (0)|
I tend to be a planner. It’s not that I lack the ability to be spontaneous and go with the flow but I think it’s because I’ve had to adapt to variable situations so often that as a result, I try to cling onto things that I feel are within my control. So with a few months to go until I reach my due date I’m trying to prepare the best that I can but I have a feeling that no matter how well I think I understand the events to come, it’ll be one of those things in life that can’t be explained or planned. I’m thinking that it’ll be similar to when you are going to be a parent for the first time. You think you know what it’ll all be like since you’ve been around children before but you soon realize on the day it happens that it was so much more than you could have ever imagined.
I’m super anxious to see and meet our precious baby; it feels like we’ve been waiting for his arrival for so long already. I’m also really scared for what lies ahead for him. I wish in my moments of fear that I had more faith and that I could be more inspirational for those that are reading this and find themselves in a similar situation. The reality is that I still find it difficult at times to believe that this is all happening. My pregnancy feels “normal” and every day I see the faces of my healthy kids which prolong my temporary delusions that everything is perfectly okay. I look at Alexander who will be 2 in a couple of months and I can’t imagine having to have him go through 2 open heart surgeries, multiple medical procedures, and countless doctor’s appointments – that is after all what we can expect for Nicholas at that age. The crazy thing is that’s the best case scenario; I know that there is and always will be a dark reality that also follows close by that says that the odds are against us.
In our preparation of things to come, we’ve traveled down the road and entertained briefly the unthinkable – we’ve discussed what we would do in the event Nicholas doesn’t make it and have even visited a few cemeteries in Michigan and some while we in Minnesota. It’s such an awful place to be and painful to even think about. While we were visiting one place we saw an area they had designated to children. Although it was beautifully done, I couldn’t imagine being separated like that. Our intention in visiting different cemeteries is that we would be buying all our plots together. So if Jimmy and I end up having burial plots, our story will have taken a sad turn. I’m praying we won’t have to buy anything for a long time but I’m again in a place where I have to relinquish any sense of control I have and trust in God and whatever comes.
We went back to MN for a short visit with family and to drop off Tank at my dad’s house. I hate to leave him there but I feel that he’ll be taken care of while we are dealing with Nicholas’ health issues. Tank’s already been bumped down the totem pole and ignored a little more since Alexander’s arrival, and that’s not fair for him either. Apart from the dog, it was nice to go back home and see our family. We normally stay at my dad’s and he always goes out of his way to make it as comfortable as possible but it’s never quite right because we are taken out of our usual routine. It’s just a bit difficult to live out of a suitcase and runaround everywhere to see everyone. Both our parents are divorced which automatically takes up 4 of the 7 days we were there to ensure that we spend equal time with each parent. We also wanted to make sure we saw all of Jimmy’s siblings but they all have kids and busy lives too so scheduling and fitting in a visit for the remaining 3 days was no easy task. Any extra time we could find was designated to seeing family and friends and running Minnesota errands.
We managed to get new car tabs, open a new business bank account, arranged a couple business meetings for our nonprofit, run out to the military base so I could get a new ID (the ID place in Michigan is so slow and we thought it’d be better to try while we were in MN), visited a couple of cemeteries, coordinated a night at a hotel with a pool so that the boys and their cousins could go swimming, , visited with some family friends, and fit in a few games of bowling and arcade fun with one of Jimmy’s old friend. With all that packed into one week, I’m glad to be back in Michigan and able to sleep in my own bed.
It’d be so much easier if we lived in Minnesota where all our family is and the topic of moving back has come up since Jimmy is supposed to retire in the next 2 years. We’ve grown used to being independent and doing things on our own since we’ve moved around so much but I think we’d feel better knowing we had family close by to help if we needed it in our current situation. Additionally, Minnesota does have the Mayo Clinic and a Children’s Hospital which both are listed in the top 50 for pediatric surgery hospitals. I’d love to move back to Minnesota but I’m also so thankful that we are in Michigan where we are so close to the hospital and surgeon we’ve chosen. Besides the issues with Nicholas we also have James’ wellbeing to worry about as well. He starts high school next year and I hate to pull him out of yet another school and we were going to try to stay put until he graduates. We thought this was the perfect transition for him because he was able to meet some kids in 8th grade that he will be going to high school with. We’ve moved him so many times that he may not even care if we move again. He doesn’t have a hard time fitting in and has a lot of acquaintances in school but I’m not sure if there are any meaningful friendships though.
So this is my own tale of two cities in which I’m torn and will have to let life take its course as this is yet another unknown which has been added to this journey of ours.
|Posted by Sherri Viner on May 13, 2015 at 7:20 AM||comments (0)|
Another sleepless night and I find myself back at my laptop. I’m not sure if it’s the pregnancy that’s keeping me awake or all the things juggling around in my head. Since I’ve started this blog I’ve also thrown myself into social media which is still very challenging for me at times. I find myself on and checking it all the time since it’s still so new to me. I’m still trying to figure out all the proper vernacular and protocols. Since I’ve put myself “on the line,” I will say that there are a lot of things out there that amuse me. One observation I have made is that people you know aren’t people you know? What I mean is that the person you know in real life is NOT the person you know on Facebook. Maybe it’s just me but people’s lives are not perfect all the time, are they? Getting involved in this virtual world I almost forget what I know to be true in real life because it is blurred by what I am presented on Facebook as the truth.
Let’s face it, pictures of smiling faces and puppy dogs gets way more attention than when someone shares something like I’m not really doing well or that they are struggling with something. I can understand that not everyone wants to share bad things. I get it; no one wants to be a Debbie Downer or to be around one. It’s no wonder though that people who have thousands of friends on Facebook still find their lives to be lonely and lacking. How can we really make meaningful connections with someone if all we see is the portion they want us to see? To me, the most significant connections are with people that have seen you at your worst who are cheering you on and celebrate with you during your moments of triumphs and happiness.
So this is where I find myself. I am sharing my experiences going through this pregnancy knowing that our son will have health challenges right out of the gate. It’s not good news but it’s the truth and this new truth is a part of me. So have I now become the Debbie Downer and not realized it? Has being truthful made me into something perceived as depressing? I wish I could say that I’m the same person as before we found out the bad news about Nicholas but that would be a lie. There are still many parts of me that are the same like that I love to laugh, watch movies, and enjoy listening to music as I try to cook new recipes. But to go through the experiences of this new chapter in our lives and not be changed in some way seems nearly impossible. So if I’m viewed as a downer, I don’t apologize for it because this is my real life, the real me.
I’m not the same person as I was a few months ago, but I wouldn’t change it if I could. I probably appreciate and have more gratitude of life’s moments now than I ever did before. The sound of Alexander’s laughter as we have our tickle sessions never sounded as sweet. The almost daily debates and arguments with James caused by his teenage know it all attitude frustrates me to no end, but I’m still thankful for it. The simple text message my husband sends that says I’m thinking of you and that I miss and love you, reminds me how lucky I am to have someone who is always walking along side me. And here’s to making real connections with people old and new, I’m more appreciative than ever.
|Posted by Sherri Viner on April 30, 2015 at 9:25 PM||comments (0)|
We went to meet the surgeon today along with the neonatologist. The day started out great, Alexander was in good spirits, weather was cooperating with no rain in sight and loads of sunshine, and Jimmy was able to spend the morning with us before we had to go to our appointments. Once we got there, that was a bit of another story.
We checked into the cardiology department and I was anxious to meet the surgeon. As we were waiting, the toys in the waiting room were too alluring for Alexander and he had to go play with them. Jimmy let him loose and let him out of his stroller. Yikes- I just kept thinking what a bad idea this was. How were we ever going to get him back into the stroller when we were called because I know that he will not like the fact that we have to pull him away from his new beloved toys? I played it out in my mind, it was going to be a disaster and sure enough that’s when all the craziness began.
We strapped him in as he was protesting all the while. Some children have almost a cute little whine... If you can imagine the world’s largest set of lungs and then imagine the world’s loudest screams coming out of those lungs you might get an idea of what we were up against. I thought his behavior was deplorable at our previous ultrasound; this was something on a whole new level. I could have sworn the devil possessed our sweet little boy for about 3 hours today.
We pushed him into the room where Dr. Haw was waiting for us. Right from the beginning Alexander decided to introduce himself in a very expressive way and demanded he get out of his stroller. I reluctantly gave in as a means to try to calm him so that we’d be able to go on with our meeting. Mistake #2! Alexander decided to do his I’m made of jello and collapses his body in such a way so that I couldn’t pick him up, it’s so frustrating.
Dr. Haw was just as I expected. He was very pleasant, soft spoken, and made us feel very comfortable. He was really understanding of the fact that we were both struggling to keep our toddler from destroying the entire room. It couldn’t have been easy for him. Trying to make sure we understood what to expect by diagraming out and explaining some very complicated procedures with a little one throwing the longest tantrum in history.
We discussed the 3 surgery set again which ultimately leads to the Fontan circulation. He went into further details of the other defects that were seen in the ultrasound along with some of the issues that we could face at each surgical step. It was also the first time that right atrial isomerism was mentioned. It brought me back to the day we first heard of heterotaxy because I had read about right and left isomerism. I just remember thinking then that I was hoping it wouldn’t be right. Everything I read said that right atrial isomerism had very poor prognosis and mortality rates were really high. So when the doctor brought that up it was a bit of a shock to the system. This poor little guy can’t seem to get a break and he isn’t even born yet.
The above picture is the findings from the April 16 Ultrasound- I’m no medical expert but I tried to explain from what I know in the parentheses
1. Heterotaxy syndrome, findings consistent with right atrial isomerism
2. Discordant cardiac apex and the stomach; levocardia with stomach on the right (Heart is on the correct side of the body but the related structures are not- in our case the stomach presents on the right)
3. Left AV valve atresia (The atrioventricular connections are abnormal as in closed or absent)
4. Sever hypoplasia of the left-sided ventricle (underdevelopment or incomplete development of the left ventricle)
5. Great vessels transposed; aorta anterior, arising from the main ventricle (The two major vessels that carry blood away from the heart -- the aorta and the pulmonary artery -- are switched.
6. Pulmonary atresia with ductal supply of the confluent branch pulmonary arteries (the valve that lets blood out of the heart to go to baby's lungs isn’t form correctly. Blood from the baby's heart can't go back to the lungs to pick up oxygen.)
7. Left aortic arch (ventricular atrial connections are abnormal. Aortic arch is leftward based on position of trachea with branching anomalies)
8. Bilateral superior vena cavae (the SVC returns the blood from upper part of body drains into the right atrium)
9. Pulmonary venous connections are not determines (Normally, pulmonary venous return carries oxygenated blood from the lungs to the left atrium where it can then be pumped to the rest of the body)
10. Normal venous flow profiles, no evidence of significantly altered fetal circulation
The biggest variable in all of this is of course Nicholas. Nothing will be confirmed until he is actually born and they are able to do scans on him. Things could be oriented in a manner that the doctors hadn’t expected and things could show up from complications of heterotaxy like malrotation of intestines. It’s too difficult to tell everything in utero, but with that said I’m so amazed and thankful of what they can identify. We are so much better prepared and able to get the appropriate medical professionals assembled for Nicholas’ care.
We were finished with Dr. Haw. He was so awesomely patient with us during our appointment and I felt relieved for him that we were going to leave! Of course as we got Alexander in his stroller and walked out of the room you would never know he just had a 1 ½ hour long tantrum.
One more appointment to go, but by this time Jimmy and I were both exhausted. We got to the area for our second appointment and were set into a conference room where we would meet our social worker person and the Neonatologist. Luckily this was more of a short and sweet type of meeting. We got all of our questions answered and the visit was really so that we could get a good picture of the events following Nicholas’ birth. What would happen to him, where he would go, who would care for him, how would they care for him, etc. It’s a real team effort among the neonatologists and nurses and I felt pretty good about it all. The social worker will be our main contact from the time of birth through Nicholas’ discharge.
The really nice thing is that all the different parts of the hospital are linked. So from the delivery area to the NICU would literally take about 2 minutes to get to. We went on a tour of the NICU areas. That part was when I started to feel that familiar sadness set back in. I was hoping I wouldn’t see any babies in there but of course I did and it made me almost lose it. That will be our little one and where we will live for a while. Everything up to this point was theoretical, but in that place - in that moment, everything was so real and that was hard to handle.
We finally left the hospital and Alexander fell asleep almost as soon as he was placed in his car seat. I left feeling low, like the first time we found out something was wrong with Nicholas. I was a little surprised I found myself back there again but I’m sure I’ll be going back and forth on this emotional rollercoaster many more times.
Our objective at this point now is to go full term, throwing a premature baby on top of everything else could further complicate matters. So despite the fact that I’m only 6 months pregnant and look like I’ve swallowed a semi-truck, I’ll gladly slap a wide load sticker on my back and call it a day! Our next doctor’s appointment is May 21st where we’ll be getting another echocardiogram so that the cardiologist can take another look along with some of the normal pregnancy things like the glucose test.
|Posted by Sherri Viner on April 21, 2015 at 4:05 PM||comments (0)|
Since our ultrasound appointment last week with Dr. Schneider, Jimmy and I have gotten comfortable with the idea of delivering and having Nicholas’ heart surgeries at the Helen DeVos Children’s Hospital. Prior to our appointment, I was thinking that we would have to go to Mott’s Children’s Hospital in Ann Arbor which is 2 hours away. The logistics of how everything would work has been weighing heavily on my mind. We have other children and Jimmy’s work to consider. The good news is that DeVos it is literally minutes from where we live and it would surely make life a bit easier.
Dr. Schneider was reassuring as he spoke about the ability and experience of his colleagues and the facilities at his hospital. He told us that he couldn’t remember the last patient they had to refer to Michigan (Mott’s). It’s obvious that his hospital is where his loyalties lay but I really got the sense that he had our best interest in mind. He encouraged us to seek a second opinion if we didn’t feel completely confident about DeVos and also indicated that both hospitals have a very good cooperative working relationship with each other. Had he not been open minded to us seeking another opinion, no question about it, we would be going to Mott’s.
Everything that I’ve researched about the facilities and doctors has been great and DeVos feels like the right fit. But, I also know from the heterotaxy community discussion boards, having the right surgeon is the difference between life and death. Are we making the right decisions? I’m not necessarily second guessing myself but there is that little space in my mind that says, if something happens will I be able to forgive myself or would I always think what if? I think a lot is going to ride on how we feel after we meet the surgeon and the neonatologist next week. I hate to think that a decision of this magnitude is left to a gut feeling but ultimately it is.
One thing we know is that Nicholas’ surgeon will be Dr. Haw. His credentials are impressive as he was the chief of congenital cardiovascular surgery at the University Hospital of Southampton for the last 15 years and is the current chief at DeVos. Everything I’ve seen and read about him leaves me feeling more confident and I just get the sense from what he is quoted in saying that he seems to be a genuinely great person not just a great surgeon. I think that would make the overall experience better if we are able to communicate openly with someone that we feel comfortable with. After all, we are in it for the long haul and know we will need multiple procedures done by this person.
I’m hoping to get the exact list of issues that we are facing in regards to Nicholas’ heart. I’m not entirely sure where on the spectrum we are as far as complexity goes with heart defects either and that is also something I’d like to get a feel for. Our appointment with Dr. Haw is next Thursday April 30th at 1:00. We also have a back to back appointment with Dr. Beaumont who is the Neonatologist which is also going to be critical part of our future.
There is such gravity to this upcoming appointment. It is one of the biggest moments and the first fork in the road on our journey thus far. We are meeting some of the critical team members that we may be entrusting our son’s life to...I’m not sure that anything can prepare you for that.
|Posted by Sherri Viner on April 17, 2015 at 12:55 AM||comments (0)|
Today was finally the day we’ve been waiting for since our visit in which they told us that Nicholas has heterotaxy. Our appointment was the first of the day at 8:00 am so we didn’t have much time to think about what was ahead since we were rushing out the door. The mornings tone was set by a dreary rainy sky but the drive was fine except for the bit of traffic going into downtown.
We checked in and just a few minutes later we were being ushered towards the ultrasound room. We went into the exact room that we went into a month ago which made me feel a bit uneasy since this room didn’t give us the best of results. We had a very lengthy ultrasound, nearly 2 hours in fact. Luckily this time around my mom was in town. She was a much needed extra set of hands and was able to take Alexander into the waiting area when he got fussy.
Dr. Schneider, the pediatric cardiologist, accompanied the ultrasound tech midway through to look specifically at the heart. As I was lying there, there were a lot of heart terms flying around and I was trying to piece together what I’ve researched against what my untrained eyes could see. After they gathered all of the images and the doctor was finished taking down his notes, we went into another room to get an explanation of the scans. Dr. Schneider started by telling us that the baby has a very complex set of heart defects, which we already knew was coming. He went into explaining a few of the anatomical layouts but explained he was not very artist and wasn’t very good with diagrams. We would get those specific details when we meet with the surgeon in a couple of weeks along with the full write up of his diagnosis. We only got a few main things today along with a picture of things to come once the baby arrives.
The main notes from today were heterotaxy, stomach on the right, liver is more towards the left, most likely asplenia (no spleen), left atrioventricular valve atresia, right single ventricle, and pulmonary atresia. We will get the full laundry list when we meet with the surgeon. The very simplified version is that one side of the heart is not developed enough to function correctly and there is a connection missing that gets blood to the lungs. We will have to undergo a 3 surgery set; Norwood, Glenn, and the Fontan. The first will be done probably within the first week after birth where a shunt will be placed to direct proper flow. After a couple weeks of recovery in the hospital, we’ll be able to take Nicholas home for a few months to let him grow before we have to go back for the second surgery. The last of the series will be done somewhere between 2-4 years of age. It all depends on the child and the surgeon. Obviously this is a very simplified version of things to come and hopefully each of the steps goes as smoothly as it was explained...
Somehow I feel calm about everything. I’m not overly anxious, sad, angry, or scared. Before we were on a path but it was all shrouded in the darkness of unknowns. Now, we are on the same path but it has a little light shining on it showing us a little more of where we are headed. I’m just kind of relieved to be where we are, kind of like, we hit another checkpoint and we are just cruising along.
Our next appointments are with the neonatologist and cardiac surgeon in a couple of weeks and another ultrasound with Dr. Schneider in 5 weeks. So here we are again, the waiting continues until our next marker.
|Posted by Sherri Viner on April 15, 2015 at 9:30 AM||comments (1)|
It’s been a while since my last post. I still find it difficult to actual try to articulate what’s going on in my head. Since my last posts I’ve gotten into some closed heterotaxy communities on facebook. Everyone is very supportive but in the same breath, it also brings reality to the forefront. I see all these families and children going through these unimaginable things and it’s like we are given our very own mirror on the wall to show us our future. I can hardly imagine being able to go through it all and pray we’ll have the strength.
I’ve been trying to keep busy and I’ve really submerged myself into our new nonprofit venture. Initially, I questioned myself many times as to the reason I was doing it, was it just to keep myself occupied through all of this? I’ve had to ask myself the some hard questions, like what if something horrible happens to Nicholas- will I lose interest or desire to pursue the nonprofit mission? I always come back to the fact that this feels “right.” It’s hard to describe, but I think this may be my direction and one of my purposes in life. I’ve always been envious of those people that just knew what they wanted to do with their lives and had a so called calling. I could never relate and I always wondered if I’d ever grow up and get mine, I think this may finally be it.
Despite keeping busy the fact that there is something wrong with our baby never leaves me. The overwhelming sense of sadness has subsided, but the worry and concern remain. I think it’s just natural of any parent but maybe even more so for parents with children with special needs. I conceded that this is just a glimmer into my new “normal.”
I’m just one day away from the doctor’s appointment that we’ve been waiting for what feels like an eternity. The wait leading up to this day has been excruciating long. I’ve gotten an idea of things to come from other stories and families that I’ve seen but each case is so individualized. We still have so many unknowns in front of us and that’s the scariest thing to tackle. I’ve been left to my own thoughts which can be a dangerous thing. My mind will start to drift into the darkest parts of my thoughts, and suddenly I’ll feel a flurry of kicks. Almost as if Nicholas is telling me that he’s a fighter too and to not lose hope.
|Posted by Sherri Viner on March 23, 2015 at 2:10 AM||comments (2)|
After we found out the initial diagnosis and long term prognosis we slowly began to tell people. The question of terminating the pregnancy has not only been asked, but in many cases we felt like people just assumed we would. I wouldn't be honest if I said I hadn't at least thought about it. I thought about how much easier it would be on our family, after all we are raising two other boys. Not to mention that it may be more humane right? Why would anyone knowingly want to put their child through the pains of medical issues and hospital stays if they didn't have to. In the end, our decision is solely based on our faith and belief in God.
Faith is something many people proclaim to have but when it comes right down to it, it's much harder to live with it. I can't explain why some children get sick or why certain people die and others don't. What I do know is that there's a bigger purpose or reason that may not be immediately seen or understood. I have my human moments all the time and I still question God and ask why we were chosen to be Nicholas' parents. That's where our faith kicks back in and says to relinquish our doubts and trust in God for whatever comes. Even if our reality becomes that Jimmy and I have to outlive our son. We just want to love him as his mom and dad for as long as we can.
We continue to live with Faith, Hope, and Love.
Upcoming: Our next appointment is scheduled with the pediatric cardiologist on April 16th. We should get more information on the specific heart defects then.
|Posted by Sherri Viner on March 22, 2015 at 2:05 AM||comments (0)|
The next morning came, as it always does, whether I wanted it to or not. I didn't have much time to think or sort out what I was feeling about the news we just received. I had work to finish, an overly active kiddo who wants all of my attention, and a house to clean before Jimmy’s parents got in town. The visit was planned before we got our news and I wish we didn't have to have this “thing” hanging over us. Regardless, it’s always nice to have family around and honestly I really needed the diversion of having guests.
That night Jimmy came home at about the same time his parents arrived. He came in and had a fancy little bag with him. He had texted me earlier in the day and said he got me a present. When I got the text, I thought it was really sweet of him but I didn't think much of it and figured it was something small to cheer me up. I was excited to open it but I was nervous because I had an audience. I hate opening gifts in front of people because I’m not very animated and so I probably don’t give the feedback they are expecting. It doesn't mean I don’t love whatever the gift was, I’m just terrible at receiving things. I took out a small box, the kind that holds a ring. It was a diamond ring in the shape of a heart. It fit perfectly between James and Alexander's birth stone rings. Jimmy then asks if I like it and of course I did and he proceeded to tell me the story of how he came about getting it and the other part of the gift.
He tells me that he was at the mall with one of his soldiers who wanted to look at a men’s watch at the jewelry store. While they were there he saw a diamond heart pendant and some of the perpetual diamond necklaces. One thing led to another and he finds himself telling the people at the jewelry store the story about Nicholas. One of the jewelers then says that he just got in a single heart shaped diamond which apparently they never get. He offered to take the diamond and custom mount it in the center of the heart pendant to make it look like it's in motion. Jimmy then tells me that he got it as my anniversary present but mainly because it represented our baby and this way Nicholas’ heart would always beat. Well, who wouldn't fall to pieces after that story! My eyes were watering but I managed to keep myself composed. Had my in-laws not been there, I probably would have been a blubbering idiot. Just remembering it and writing about it makes me tear up again. Then he says the ring was basically thrown in for free. It made me have a quiet chuckle to myself because if you don’t know Jimmy, he always likes to feel like he got a good deal.
The next evening we all went out to dinner to the Olive Garden which I love. Anyone who doesn't like their bread sticks and salad is crazy. We were there celebrating our anniversary. As we were being greeted by our waitress, she offered us a sample of one of their wines. She went around the table and everyone agreed and when it came to me, I of course declined. She said something like are you sure- you are celebrating your anniversary? I froze for a second and Jimmy jumped in and said no she can’t she’s pregnant. Then in a loud voice for everyone in the building to hear, she says something like oh my, congratulations, blah, blah, blah. I can’t remember it very well because I was embarrassed she was talking so loud and I kind of wanted to just hide under the table. I had to put on my happy face and gave a little smile. It wasn't her fault, she didn't know and it’s only natural to react like that. It’s only going to get worse as I start to show more and more and everyone will inevitably want to touch and ask when I’m due. Don’t get me wrong, I am happy to be pregnant but when people ask, it reminds me of what a wonderful happy time it should be. Even though it is a blessing, this time in our lives is full of uncertainty and worry.
We stopped at the mall to pick up the necklace, only Jimmy and I went in. It wasn't done but Jimmy wanted to pick it up so I could see it all together with the diamond mounted in the center. We would have to bring it back to get the custom mounting done though. It was beautiful, but even more so because it represented so much! Jimmy put it on me before we left and as soon as I turned away from the people at the store I started to cry a bit. You’d think by now with all the crying I've done that I wouldn't have any more tears. Somehow they always seem to come though.
The rest of the visit with our guests was nice. We just took it easy and hung out most of the time. We brought up what was happening with Nicholas just briefly a couple of times. I found myself talking about it almost at a third person kind of distance. I probably just sounded matter of fact about it all, even though on the inside I was fighting back all sorts of emotions. I did find some quiet moments to myself, like when Jimmy took his parents to the store, to have a brief little cry. Sometimes I would wait until everyone in the house was sleeping and I’d quietly cry myself to sleep. I’m not sure if I’ll ever stop crying for our Nicholas...
It’s only been a week since we found out the news and Jimmy and I are already so tired of feeling so helpless. Nothing we can do right now will fix our baby. So instead we are doing what we can and putting our energies into something that will make a difference. We are trying to educate ourselves on this disorder, running a fundraising campaign for charity, and passing along our story to help spread awareness.
|Posted by Sherri Viner on March 21, 2015 at 2:00 AM||comments (0)|
I picked Jimmy up from work and headed to our appointment. The car ride was calm even though we were both full of nerves. We got Alexander set up in his stroller and we went up to the doctor’s office and checked in. It was around lunch time and because we had so much time before we were going to be called, we headed downstairs to the food court area which was between the offices we were at and the Children’s hospital on the other side. Jimmy waited in line and got some food from Smash Burger and everything was normal like we were just hanging out at a food court in the mall. In reality was it was the calm before the storm.
We went back upstairs and finally got ushered into exam room 1. There was a big screen above so we could watch the scan that was going to be taking place and a large ultrasound machine that filled the room. I started to get nervous and had to tell myself to breath slowly. The tech took forever in getting back from lunch and we sat in the room and waited. It probably wouldn't have been so bad except that Alexander had already been cooped up in his stroller for about an hour and now was stationary again. We were trying to ask an 18 month old to just sit and behave for close to another hour. Not so much, he started to freak out. It got so bad that not even our final resort friend, the infamous Ipad, could save the day. He was terrible, I've never seen him like this and I felt awful because I couldn't help Jimmy calm him since I was lying on the table getting the scan done. I should have known right then and there that Alexander’s behavior was a sign of things to come.
The Scan wasn't quite complete and the tech told me to stay lying down and that she was coming back with the doctor. At this point Alexander was so bad that Jimmy had to take him out of the room. The doctor came in and the tech scanned a few things and was discussing it with the doctor. They weren't talking about any issues, it was just the doctor asking to see different angles of things and asking the tech to put “colors” on images. The colors were just to the blue and red that showed the blood to and from the heart.Then it was over. I got the goo off me and they turned on the lights. The doctor sat down in front of me and asked if I would like someone to go get Jimmy. I thought it be best to just get the news while it was quiet as I just knew Alexander was still very upset.
The doctor started by saying “okay I’m not going to sugar coat it. Your son has very serious heart defects.” There it was, my worst fears were realized but since I did some research I had an idea of what may be ahead and I didn't feel completely lost. She then continued to tell me that they saw that his heart was in the correct position and pointed in the correct way but that his stomach presented on the right side of his body which wasn't normal. The doctor didn't go into the specifics of the defects because she said it was still difficult to see everything since the baby’s heart was the size of a pinky finger nail. She went on to say that we needed to come back to see the pediatric cardiologist. Apparently I scanned well enough to come back in a month versus having to wait 2 months. The cardiologist should be able to see the heart better in a month and give us more specific details as far as the defects.
I was still holding everything together until the doctor went on a webpage from a medical site and sited its mortality rate. Apparently she was driving home the fact that what we were facing was grim and that she didn't want to give us any false hopes. Message loud and clear, as soon I heard the survival rate was less than double digits I started to fall apart. I still didn't even know what the name of the disorder was. Everything she said after that point is a bit of a blur. I asked her if they could print me out the information from the websites we looked at together. I also asked through my tears if they could tell Jimmy because I knew I didn't have the knowledge or ability to relay what was just told to me.
We then all went into a conference room to wait for Jimmy. By this time, I had pulled myself together again and stopped crying but I was clearly upset. Jimmy came in with Alexander who was squirming around. So now it was my turn to take Alexander out of the room as he screamed while Jimmy got the news from the doctor. After a while, I went to check on them in the conference room and they were wrapping up. We both looked at each other, neither of us could believe what was happening.
The whole car ride home I was numb and I would have little bouts of tears. We talked about what we were thinking as I continued to read my printed out information. Heterotaxy, that’s what it was called. Neither of us had ever heard of it before. Nothing we read was good. We both thought we were prepared for the worst case scenario but we were thrown for a loop with what was now beyond our worst case. If it had only been the heart or only the stomach it would have been more manageable but since it was together we were dealing with something altogether more complicated.
As we pulled into the driveway, James was walking home from the bus stop. We told him it didn't look good for his brother but I knew he could already sense that the news was bad. The rest of the night just dragged on as we all were furiously trying to understand what Heterotaxy was. Each of us finding out new facts and sharing it with the other. The research process was difficult though. There isn't a lot of information out there and in reality each case is so different because of the varying severity of defects along with specific organ orientations. We had more questions than answers.
That night we went to lie down to go to sleep and that’s when everything just hit me. I think I held off as long as I could, but I started to weep uncontrollably. I cried so hard that I could hardly catch my breath. I kept thinking of the ultrasound and how his little heart, despite being broken, was beating away. This poor baby had no idea there was anything wrong with him. He has no idea the potential challenges he faces. I was so sad for our little boy. Jimmy stroked my head and rubbed my back gently to try to console me but it almost made it worse because I knew he was hurting too. So I continued to cry for both of us.
|Posted by Sherri Viner on March 20, 2015 at 1:55 AM||comments (0)|
Another week goes by since the negative materniT21 test and I'm already back at the doctor’s office for the routine anatomy scan. I already knew that I'd have to come back for another one since I wasn't as far along as they thought I was. Regardless I was just excited that we were going to able to see him for the first time.
My name finally gets called from the waiting room and Jimmy pushes the ridiculously huge stroller through as I drag along my purse and Alexander's large bag of goodies- basically they're things that we can try to entertain or bribe him with to help keep him calm and not have a freak out tantrum during the appointment. The toys, books, and food worked. He was pretty good through it all, thank goodness. I hate being that person. You know the ones, the why can’t you get control of your crazy screaming children kind.
I can't recall the ultrasound techs name but she was super friendly and perky. I got on the table and the ultrasound began. Oh my goodness- there he was. It was the silhouette of an actual baby! I was surprised to see it so clearly so soon. He looked perfect with all his fingers, all his toes, all his bone structures intact, and we even saw a human looking face on the 4D scan. It was still a little distorted since at 16 weeks pregnant the baby doesn't have much fat and he was still a bit skeletal.
We were making small talk with the tech during the scan and she would point out different images as we were going along. Then as she was concluding the scan she says "the bad news is…you have to be pregnant longer." What!? Was something wrong?!! My brain had stopped at "the bad news is." Who does that? Why in the hell would you start a sentence with that to a pregnant woman getting an anatomy/anomaly scan? Once I processed that she meant because I was supposed to be over 19 weeks but I scanned at 16 weeks 2 days, I was okay. A rush of relief passes through me and the scan was complete. She walked us back to the waiting room since I had back to back appointments. They set up the routine visit with my OB doctor in conjunction with the ultrasound for convenience which was really nice. Jimmy decided to take Alexander home since the second appointment wasn't going to be anything special and was going to be short.
My OB came in the room and asked all the same questions I've been asked before, like was I experiencing any spotting, any issues, etc. I went through the questions and was getting impatient since I wanted to get back home so that Jimmy could get back to work and I could get some of my own things finished. She then proceeds to say you just had your ultrasound right…umm yes? It was the way she said it- I started to get a bit of a sinking feeling. She said that it looked like the baby was smaller than they first thought. Again, I confirmed and said yes and that I was expecting that though. She then says there was an issue they spotted on the ultrasound. She said that they couldn't see four chambers of the heart. Seriously- what did that mean?! She then calmly said that she was going to refer me to see a high risk OB doctor so that they could do another ultrasound since they were better equipped and can get a better look at the heart. She said that they would try to get me in early the next week and that if I didn't hear anything by Monday to call. The current day was a Friday which meant I had to endure the torture of waiting the entire weekend. All I said was “okay”. That’s all I could get out as I had a sick feeling come over my entire body. Somehow I managed to keep myself composed while I was still in the doctor’s office.
It felt like I was on the longest walk of my life trying to get to the privacy of my car. That’s when the first tears filled my eyes. I had no idea what just happened, everything seemed fine when we were with the ultrasound tech. She didn't hint to anything being wrong. I even recall laughing with her about some trivial things during it all. It was a bit surreal, I was feeling a bit shaky and was overcome with fear for our baby. I had to keep myself together to drive home but luckily we are only 5 minutes away from the OB office.
I walked through the door and no one had any idea what was happening. Alexander came running over to me and then my eyes filled up again. Jimmy said hi and noticed that something was wrong and asked what was going on. I couldn't even bring myself to speak because I knew if I tried I would spill out crying. I just motioned for him to wait a second while I tried to catch my breath and get myself collected enough to speak. I told him what the doctor told me, which wasn't much. He had me recall exactly what she said as if to try to read into something that maybe I had missed.
From there I did what any rational person would do, to the Google. I read post after post of several women stating that their doctors told them that they couldn't see the four chambers in their baby’s heart and that they needed to do another ultrasound as well. It brought a little ray of hope but I just had a bad feeling that it was more serious. I tried to look up heart issues and I actually was surprised to read that congenital heart defects affect 1 in 100 children. That seemed really high to me since it never seems to be brought up as something doctors warn you about. We were preparing for what would be the worst case scenario, a full heart transplant. Even with a full transplant, all hope wasn't lost since I read that many babies survive into adulthood and go on to live relatively normal healthy lives.
The weekend was full of worry and Monday finally came. This was the day I would find out when we were to have another ultrasound. I stared at the clock all day and checked to make sure the phone lines were all working. I told myself that if I didn't get a call by 1:00 pm I would call the office but I had to keep myself from calling sooner. Several agonizing hours later it reached 1:00 pm and I immediately called the office. They put me on hold as they called the referred office and relayed to me that they received the notes on my file and would call me that afternoon. As I sit waiting I kept thinking to myself what notes? What was it they sent over? Shouldn't I be privileged to know what was being said about me? Then the phone rang. Appointment was set for the following day at 1:00 pm.