As you know we had an appointment up at UofM this past Friday, December 14th which also happened to be my 34th birthday. Like all of our visits we were very anxious and nervous but this time we received all good news! Everything was status quo - whew!
Our induction date has been set for Feb 3rd with the hopes that she will be delivered on Feb 4th (which happens to be my grandmothers birthday, she has passed now). Her kidney still has fluid on it but the tissue around it is healthy. The doctor we saw this time seemed to not be concerned with it at all and told us it's very common. The pediatric cardiologist said all with her heart looks the same and that they are prepared to schedule her first surgery with Dr. Bove. This has been set for first thing on Feb 8th. They also let us know that we don't need to be back to UofM for any appointments before relocating up there on Jan 25th. So all my check ups from now till then can be done locally.
It was so nice to leave there not having a heavy heart. We felt so relieved and now feel like we are ready to move forward and enjoy the next few weeks we have with Drake, each other, family, friends and continue to prepare for Soan's arrival. I couldn't have asked for a better birthday present. We were all smiles this day leaving UofM!
Sloan's Stats:
- 31 weeks, 6 days
- heart rate ranged from 150 - 170
- 4 lbs, 12 oz (75th %)
Monday, December 17, 2012
Monday, December 10, 2012
What is Tricuspid Atresia?
I know I had promised awhile back that I'd try to explain what exactly is going on with Sloan's heart, and unfortunatley I am just now getting to it! Things have been quite busy around here with doctor appointments, Drake's 2nd birthday and preparing for the holidays. We've also begun to work on putting together Sloan's room. My goal is to have it complete before I head to Ann Arbor in mid/late January. As soon as it comes a bit more together, I'll share photos!
Onto the purpose of this post....the definition of tricuspid atresia. Below is some text from the Univ of Michigan. Sloan's exact diagnosis is tricuspid atresia with transposed great arteries & a VSD. You'll see the article below talks about other issues as well, but those don't pertain to Sloan.
What is tricuspid atresia?
Tricuspid atresia occurs when the tricuspid valve fails to develop while the baby is in the womb. This problem is quite rare, affecting 1 in 15,000 births, and it occurs equally in boys and girls. In the normal heart, the tricuspid valve is located on the heart’s right side between the atria (the upper chamber) and the ventricle (the lower chamber). In babies born with tricuspid atresia, the tricuspid valve is absent (1) and the right ventricle is small (2). In about 25% of babies, the position of the great arteries is also reversed. In some babies, there is also a severe narrowing at the pulmonary valve (3), or there can be complete absence of the pulmonary valve. In all babies with tricuspid atresia, there is no direct pathway for blue blood returning from the body to get to the lungs to pick up oxygen. This is not a problem before the baby is born since oxygen is provided by the mother but after birth the baby’s oxygen levels are lower than normal so the baby’s lips and fingernails look blue or cyanotic. Cyanosis is the medical term used when the lips or nailbeds look blue from too little oxygen in the blood.
In a baby with tricuspid atresia, after birth, the blood must take an indirect pathway to reach the lungs. Most of the time, this pathway is through two holes in the heart. There is usually a hole between the upper chambers called an atrial septal defect (ASD) (4) and a hole between the lower two chambers of the heart called a ventricular septal defect (VSD) (5). Blue blood returning from the body to the heart’s right atrium flows across the ASD to the left upper chamber, through the mitral valve to the left lower chamber and then flows out the aorta to the body, as well as, across the VSD and out the pulmonary valve to the lungs. If there is severe narrowing at the pulmonary valve, the only way blood can reach the lungs is through a patent ductus arteriosus (6). This a small blood vessel that, prior to birth, permits the blood to by-pass the baby’s fluid-filled lungs. Normally, one to two days after birth, this vessel closes. In a baby with tricuspid atresia with severe pulmonary narrowing, closure of the ductus arteriosus removes the baby’s means of getting blood to the lungs and can result in very low oxygen levels. In this case a medicine called prostaglandin is given to keep the ductus arteriosus from closing.
We head back to UofM this Friday 12/14 for our next set of appointments. I have to admit that before each trip I get a bit sick to my stomach of what they might tell me. We are hoping and praying that they let us know her kidney has either gotten better or has stayed the same (we just don't want it to get worse), that the heart looks the same and that there are no other new concerns or issues. Please say a little prayer for Sloan this week and send your good thoughts our way on Friday!
Onto the purpose of this post....the definition of tricuspid atresia. Below is some text from the Univ of Michigan. Sloan's exact diagnosis is tricuspid atresia with transposed great arteries & a VSD. You'll see the article below talks about other issues as well, but those don't pertain to Sloan.
What is tricuspid atresia?
Tricuspid atresia occurs when the tricuspid valve fails to develop while the baby is in the womb. This problem is quite rare, affecting 1 in 15,000 births, and it occurs equally in boys and girls. In the normal heart, the tricuspid valve is located on the heart’s right side between the atria (the upper chamber) and the ventricle (the lower chamber). In babies born with tricuspid atresia, the tricuspid valve is absent (1) and the right ventricle is small (2). In about 25% of babies, the position of the great arteries is also reversed. In some babies, there is also a severe narrowing at the pulmonary valve (3), or there can be complete absence of the pulmonary valve. In all babies with tricuspid atresia, there is no direct pathway for blue blood returning from the body to get to the lungs to pick up oxygen. This is not a problem before the baby is born since oxygen is provided by the mother but after birth the baby’s oxygen levels are lower than normal so the baby’s lips and fingernails look blue or cyanotic. Cyanosis is the medical term used when the lips or nailbeds look blue from too little oxygen in the blood.
In a baby with tricuspid atresia, after birth, the blood must take an indirect pathway to reach the lungs. Most of the time, this pathway is through two holes in the heart. There is usually a hole between the upper chambers called an atrial septal defect (ASD) (4) and a hole between the lower two chambers of the heart called a ventricular septal defect (VSD) (5). Blue blood returning from the body to the heart’s right atrium flows across the ASD to the left upper chamber, through the mitral valve to the left lower chamber and then flows out the aorta to the body, as well as, across the VSD and out the pulmonary valve to the lungs. If there is severe narrowing at the pulmonary valve, the only way blood can reach the lungs is through a patent ductus arteriosus (6). This a small blood vessel that, prior to birth, permits the blood to by-pass the baby’s fluid-filled lungs. Normally, one to two days after birth, this vessel closes. In a baby with tricuspid atresia with severe pulmonary narrowing, closure of the ductus arteriosus removes the baby’s means of getting blood to the lungs and can result in very low oxygen levels. In this case a medicine called prostaglandin is given to keep the ductus arteriosus from closing.
We head back to UofM this Friday 12/14 for our next set of appointments. I have to admit that before each trip I get a bit sick to my stomach of what they might tell me. We are hoping and praying that they let us know her kidney has either gotten better or has stayed the same (we just don't want it to get worse), that the heart looks the same and that there are no other new concerns or issues. Please say a little prayer for Sloan this week and send your good thoughts our way on Friday!
Monday, November 26, 2012
Feeling Blessed!
Today we received the most amazing phone call! The Univ of Michigan called to let us know that our blood work was back and everything is NORMAL! Words cannot express how happy and relieved we are. Thanks to all of you for your thoughts, prayers and support. We were given a great blessing today...and I hope this is a sign of more good news to come!
Friday, November 16, 2012
UofM Apppointment
As most of you know I had my second appointment with UofM yesterday. Our day consisted of meeting with genetic counseling, having an ultrasound, getting a fetal echo and meeting with the surgeon. We had went into this day feeling good, ready to get some questions answered and see our little girl again. We left feeling quite deflated as we didn't get the exact news that we were hoping for (that all looked the same as before and she is developing well).
Our first appointment was the one that knocked us off our socks. We met with the genetic counselor who sat with us to take family history, discuss some testing options, etc. Kyle and I both decided before going into this meeting that we did not want to test to see if Sloan had any other abnormalities. We communicated that to the counselor and she supported our decision. After that meeting we went to do an ultrasound. During that ultrasound the doctor came in and pointed out to us that they discovered some fluid on Sloan's left kidney. They said it's of moderate concern, fluid level was at an 11, mild concern is when the level is at 5 - 6 and high concern is when the level is at 15 or more. Right now they are unsure what this means for her kidney. The tissue around the fluid looks healthy and her right kidney is perfectly fine. They also re-assured us that anyone can function normally with only one kidney if needed. What concerned them the most was now she has two major organs not developing/functioning appropriately (heart & kidney). This puts up a a red flag to them that there could possibly be something else larger going on (chromosomal disorder). If it's anything, they think that it would most likely be down syndrome. They gave us the option to do an amnio or a blood draw to confirm for sure. The amnio being able to test for all chromosomes, the blood draw being able to test for the major three (down syndrome, chromosome 13 & 18). We were shocked, scared and heart broken once again. We left that meeting in tears and unsure of what the right next step was.
The remainder of our appointments went how we wished the entire day would have gone. The OBs let me know that they will induce me at 39 weeks (no set date yet) and that I will need to be in Ann Arbor at 38 weeks seeing as I came two weeks early with Drake. The plan will be for me to deliver vaginally unless of course there is a need for a c-section (like any delivery), after birth they will take Sloan and check her out, get her started on a few meds and ensure she is stable and then bring her right to us so we can hold her. The cardiologist said that there are no changes in her heart (positive thing) and that she doesn't anticipate that there will be any at this point. The surgeon, Dr. Bove, was amazing and spent so much time with us answering our questions and describing what the procedures will consist of. He also was the only one who finally gave us their recommendation on if we should do an amnio or the blood test or nothing. We had been asking each person all day what we should do and kept getting the answer that it's a personal decision. Dr. Bove was the one to reduce the anxiety and stress on our shoulders and advise us on what he thought was best. I don't think he knows how much we appreciated someone being upfront with us - but I hope to be able to tell him one day.
So, as you can tell, we did the blood work. Knowing this would test for the three major concerns and is less invasive/risky for the baby than an amnio. Now we wait...around 10 days we should have the results back. When we started this journey with Sloan I had no idea that we would hit more roadblocks. My thought, or I guess my hope, was that we'd attack this heart hurdle when we got to it. But I guess we are being challenged a bit before then. We had just now gotten to the point that we felt comfortable with her heart defect and what needed to happen. Then it seems like our world came crashing down again. I'm just not sure how much more this little baby can take - seems so unfair.
They have told us the odds are in our favor that this will come back clear. Around a 10 - 15% chance that it will show another issue. And Dr. Bove also said it's extremely odd for this heart defect to be linked to something else. But I can't help but sit and worry that our luck hasn't been good so far and that while the chance is small there is a chance. I am trying to stay optimistic and strong for Sloan but it is constantly in the back of my head and I know each time I hear the phone ring my gut will drop.
Please keep Sloan in your thoughts and pray with us that these results come back clean.
Sloan's Stats this week:
- 27 weeks & 6 days on 11/15
- heart rate: 153
- 3 lbs 1 oz (91st %) - she's a big...growing girl! :)
Our first appointment was the one that knocked us off our socks. We met with the genetic counselor who sat with us to take family history, discuss some testing options, etc. Kyle and I both decided before going into this meeting that we did not want to test to see if Sloan had any other abnormalities. We communicated that to the counselor and she supported our decision. After that meeting we went to do an ultrasound. During that ultrasound the doctor came in and pointed out to us that they discovered some fluid on Sloan's left kidney. They said it's of moderate concern, fluid level was at an 11, mild concern is when the level is at 5 - 6 and high concern is when the level is at 15 or more. Right now they are unsure what this means for her kidney. The tissue around the fluid looks healthy and her right kidney is perfectly fine. They also re-assured us that anyone can function normally with only one kidney if needed. What concerned them the most was now she has two major organs not developing/functioning appropriately (heart & kidney). This puts up a a red flag to them that there could possibly be something else larger going on (chromosomal disorder). If it's anything, they think that it would most likely be down syndrome. They gave us the option to do an amnio or a blood draw to confirm for sure. The amnio being able to test for all chromosomes, the blood draw being able to test for the major three (down syndrome, chromosome 13 & 18). We were shocked, scared and heart broken once again. We left that meeting in tears and unsure of what the right next step was.
The remainder of our appointments went how we wished the entire day would have gone. The OBs let me know that they will induce me at 39 weeks (no set date yet) and that I will need to be in Ann Arbor at 38 weeks seeing as I came two weeks early with Drake. The plan will be for me to deliver vaginally unless of course there is a need for a c-section (like any delivery), after birth they will take Sloan and check her out, get her started on a few meds and ensure she is stable and then bring her right to us so we can hold her. The cardiologist said that there are no changes in her heart (positive thing) and that she doesn't anticipate that there will be any at this point. The surgeon, Dr. Bove, was amazing and spent so much time with us answering our questions and describing what the procedures will consist of. He also was the only one who finally gave us their recommendation on if we should do an amnio or the blood test or nothing. We had been asking each person all day what we should do and kept getting the answer that it's a personal decision. Dr. Bove was the one to reduce the anxiety and stress on our shoulders and advise us on what he thought was best. I don't think he knows how much we appreciated someone being upfront with us - but I hope to be able to tell him one day.
So, as you can tell, we did the blood work. Knowing this would test for the three major concerns and is less invasive/risky for the baby than an amnio. Now we wait...around 10 days we should have the results back. When we started this journey with Sloan I had no idea that we would hit more roadblocks. My thought, or I guess my hope, was that we'd attack this heart hurdle when we got to it. But I guess we are being challenged a bit before then. We had just now gotten to the point that we felt comfortable with her heart defect and what needed to happen. Then it seems like our world came crashing down again. I'm just not sure how much more this little baby can take - seems so unfair.
They have told us the odds are in our favor that this will come back clear. Around a 10 - 15% chance that it will show another issue. And Dr. Bove also said it's extremely odd for this heart defect to be linked to something else. But I can't help but sit and worry that our luck hasn't been good so far and that while the chance is small there is a chance. I am trying to stay optimistic and strong for Sloan but it is constantly in the back of my head and I know each time I hear the phone ring my gut will drop.
Please keep Sloan in your thoughts and pray with us that these results come back clean.
Sloan's Stats this week:
- 27 weeks & 6 days on 11/15
- heart rate: 153
- 3 lbs 1 oz (91st %) - she's a big...growing girl! :)
Wednesday, November 7, 2012
Halloween
Halloween night this year we spent at the hospital passing out candy to nurses, doctors, hospital staff and visitors. Drake and his cousins had a blast dressing up and putting smiles on the faces of those in a place that isn't always happy. Drake was a hit in his dino costume - thanks Mimi!
Prior to Halloween this year Kyle and I carved a few pumpkins which we wanted to share. We made one for each of the kids, Drake & Sloan, and tried to have it represent each of them individually. We ended up with an old english letter D for Drake and a heart for Sloan.
 |
| Drake & Aiden |
Prior to Halloween this year Kyle and I carved a few pumpkins which we wanted to share. We made one for each of the kids, Drake & Sloan, and tried to have it represent each of them individually. We ended up with an old english letter D for Drake and a heart for Sloan.
 |
| Halloween 2012 |
Monday, November 5, 2012
Thankful
Well God has had a way of testing our family once again and showing us exactly what we should be thankful for. On Monday, October 29th my father was airlifted from South Haven Hospital to Borgess in Kalamazoo, MI. My mother had taken him in that morning as he was complaining he could not breathe. When he arrived to the hospital they could not diagnose what was going on with him. His vitals were all over the place. We quickly requested a transfer to a larger hospital and they lined up the helicopter to get him there immediately.
Kyle, my mom and myself drove up to Kalamazoo together as they loaded my father into the helicopter. We arrived shortly before he did and saw him get wheeled into the ICU. As he was wheeled past Kyle mentioned that he could hear him talking - a hugh sigh of relief passed all of us as we were so clueless to what is going on and how he faired in the helicopter. After they were able to get him situated in the ICU they allowed us back (my mom, me, Kyle my sister & her husband) so we could see/speak to him briefly before they put in the breathing tube. I had no idea at the time that it could have been the last time that I saw or spoke to him. Thankfully it is not the last time.
After what seemed like forever, we received an update that the issue was he had a UTI that then went septic putting him into multi-organ failure. The doctor told us that he was a very, very sick man and that as of now he is on life support and there is a potential he would not make it through. Since Monday, he has been fighting back and slowly but surely getting better each day.
Having spent a week with my family praying and hoping for the best it's also given me a lot of time to think about what I am thankful for....
Kyle, my mom and myself drove up to Kalamazoo together as they loaded my father into the helicopter. We arrived shortly before he did and saw him get wheeled into the ICU. As he was wheeled past Kyle mentioned that he could hear him talking - a hugh sigh of relief passed all of us as we were so clueless to what is going on and how he faired in the helicopter. After they were able to get him situated in the ICU they allowed us back (my mom, me, Kyle my sister & her husband) so we could see/speak to him briefly before they put in the breathing tube. I had no idea at the time that it could have been the last time that I saw or spoke to him. Thankfully it is not the last time.
After what seemed like forever, we received an update that the issue was he had a UTI that then went septic putting him into multi-organ failure. The doctor told us that he was a very, very sick man and that as of now he is on life support and there is a potential he would not make it through. Since Monday, he has been fighting back and slowly but surely getting better each day.
Having spent a week with my family praying and hoping for the best it's also given me a lot of time to think about what I am thankful for....
- A family that comes together to support each other no matter what
- A loving husband who has stepped up to help out however he can both emotionally & physically
- Friends who would do anything to help and support me during a time of need
- An amazing father who is a fighter and continues to show me how strong he is on a daily basis
- A wonderful son that even during the worst of times can put a smile on my face
- A mother who is beyond strong and we owe our fathers life to. If if wasn't for her getting him to the hospital so quickly, I'm not sure we'd be having the same outcome as we do now
- A brilliant set of doctors & nurses who have helped to get my dad to where he is now
Monday, October 22, 2012
Whirlwind....
Over the past few weeks we've had quite a whirlwind of events and emotions.....
On September 21st Kyle and I went in for our 20 week ultrasound. We were both very excited to see boy or girl! We had our bets going in (Kyle - girl, me - boy) and watched anxiously for the tech to give us the news. We were beyond thrilled when she shared we'd be having a little lady! We had already knew a name if it was a girl, Sloan Susanne, so that was an easy decision for us. After the appointment we went to pick up Drake and spent the day as a family celebrating, and of course a little bit of shopping! What girl doesn't love buying baby girl clothes? Such a high that day!
That Monday, September 24th we received the most heart breaking phone call of our lives. My OB said that after reading the ultrasound they have discovered that something wasn't right with Sloan's heart. Needless to say I was sobbing. We were told we'd need to go see a specialist to figure out exactly what it was but that she thought it was Hypoplastic Left Heart. Of course she said not to look it up, but as a mother that is the first thing I did. My mom rushed over to be with me until Kyle could get home and I just cried and cried. I was devastated that my baby girl was sick and there was nothing I could do. We had just experienced a parents worst nightmare.
Kyle and I selected to go to the University of Michigan Mott's Children's Hospital to see a specialist. After my sister did some research we found that it's one of the top 4 rated hospitals for treating children with a defect like this. We were able to get in that Friday, September 28th. Our appointment consisted of a fetal echo in which they took a very close look at Sloan's heart. During the fetal echo, Kyle and I held hands, cried and prayed.
The diagnosis wasn't what we had been praying for, but they did tell us that it's not worst case scenario. Sloan didn't have what my OB originally had thought, but she did have a serious congenital heart defect. Her exact diagnosis is tricuspid atresia, VSD and transposed great arteries. I'll try to go into what each of these mean in a later post, but for treatment it means she will need to go through a series of open heart surgeries. One will take place shortly after birth, within the first week. The second will take place around four to six months old and the third (and hopefully last) will take place around two years old. We have been told this is a complete fluke and that there is no rhyme or reason to this happening. It happens to less than 1% of babies born each year. While we are beyond overwhelmed with this outcome, we feel fortunate that we are so close to an amazing hospital that is known for being quite successful with these surgeries.
We had picked the same Sloan before Drake was born and Susanne is after my mom (Susan). After her diagnosis I was searching for anything that would give me a sign that things are going to be okay. I decided to look up the meaning of Sloan which I came to find out means fighter. It's an amazing fit for her and I am taking it as one of those signs I've been looking for.
I've decided to create this blog so Sloan can see what a fighter she really is; with hopes that it will show her how much her parents, our family and friends love her; and selfishly I am hoping it's a little bit of therapy for myself. We are taking things one day at a time, focusing on our family and our faith that things are going to be okay. We know that Sloan must have a very special purpose on this Earth and we look forward to helping her figure out just what that purpose is.
We appreciate all of your love, support and prayers and feel so blessed to have such wonderful family & friends.
On September 21st Kyle and I went in for our 20 week ultrasound. We were both very excited to see boy or girl! We had our bets going in (Kyle - girl, me - boy) and watched anxiously for the tech to give us the news. We were beyond thrilled when she shared we'd be having a little lady! We had already knew a name if it was a girl, Sloan Susanne, so that was an easy decision for us. After the appointment we went to pick up Drake and spent the day as a family celebrating, and of course a little bit of shopping! What girl doesn't love buying baby girl clothes? Such a high that day!
That Monday, September 24th we received the most heart breaking phone call of our lives. My OB said that after reading the ultrasound they have discovered that something wasn't right with Sloan's heart. Needless to say I was sobbing. We were told we'd need to go see a specialist to figure out exactly what it was but that she thought it was Hypoplastic Left Heart. Of course she said not to look it up, but as a mother that is the first thing I did. My mom rushed over to be with me until Kyle could get home and I just cried and cried. I was devastated that my baby girl was sick and there was nothing I could do. We had just experienced a parents worst nightmare.
Kyle and I selected to go to the University of Michigan Mott's Children's Hospital to see a specialist. After my sister did some research we found that it's one of the top 4 rated hospitals for treating children with a defect like this. We were able to get in that Friday, September 28th. Our appointment consisted of a fetal echo in which they took a very close look at Sloan's heart. During the fetal echo, Kyle and I held hands, cried and prayed.
The diagnosis wasn't what we had been praying for, but they did tell us that it's not worst case scenario. Sloan didn't have what my OB originally had thought, but she did have a serious congenital heart defect. Her exact diagnosis is tricuspid atresia, VSD and transposed great arteries. I'll try to go into what each of these mean in a later post, but for treatment it means she will need to go through a series of open heart surgeries. One will take place shortly after birth, within the first week. The second will take place around four to six months old and the third (and hopefully last) will take place around two years old. We have been told this is a complete fluke and that there is no rhyme or reason to this happening. It happens to less than 1% of babies born each year. While we are beyond overwhelmed with this outcome, we feel fortunate that we are so close to an amazing hospital that is known for being quite successful with these surgeries.
We had picked the same Sloan before Drake was born and Susanne is after my mom (Susan). After her diagnosis I was searching for anything that would give me a sign that things are going to be okay. I decided to look up the meaning of Sloan which I came to find out means fighter. It's an amazing fit for her and I am taking it as one of those signs I've been looking for.
I've decided to create this blog so Sloan can see what a fighter she really is; with hopes that it will show her how much her parents, our family and friends love her; and selfishly I am hoping it's a little bit of therapy for myself. We are taking things one day at a time, focusing on our family and our faith that things are going to be okay. We know that Sloan must have a very special purpose on this Earth and we look forward to helping her figure out just what that purpose is.
We appreciate all of your love, support and prayers and feel so blessed to have such wonderful family & friends.
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