Wednesday, April 29, 2009

In a Way, No News is Good News

I was in St. Pete at ACH on Monday for my second fetal echocardiogram on the baby. 2 and 1/2 hours later we finally got to leave the office. And just so noone is confused, that would be a 2 hour ultrasound by not one, not two but three different ultrasound tech (is that the right term since these people are so specialized and experts?) and two doctors. Kevin was amazed I did not fall asleep. One good thing about being a "special case" and having to see the top notch specialists is that the bed thingy you lay on for the ultrasound is an actual somewhat comfy, cushy bed.

The main doctor managing our case, Dr. H, told us that everything looks the same as 5 weeks ago. So all though my hopeful (but truly unreal) thought of things changing for the better was not the case we are not looking at any further issues or problems. Dr. H is still very confident that we are looking at Double Outlet Right Ventricle with Mitral Atresia and Pulmonary Stenosis (with completely functional and intact aorta and aortic arch). Quite the mouthful to say and understand. Here's a brief overview:

1. Double Outlet Right Ventricle - early in development the baby's heart experienced a surge (not exactly correct or technical medical term however, it is the way I understand it) causing the left side of the heart to overdevelop and then subsequently "die." The right ventricle then expanded and filled the space and function of both ventricles. Since the baby is still in utero and not breathing air, all the ducts are still open in the heart. This allows for the baby to not only receive blood through the heart but also from outside the heart. The placenta function helps move the blood to and through the lungs. Fortunately, the aorta and pulmonary vein both attached to the right side of the heart, hence the double outlet.

2. Mitral Atresia - since there is no left ventricle, there is no mitral valve.

3. Pulmonary Stenosis - the pulmonary vein responsible for carrying blood to the lungs is narrowed. Dr. H believes as the baby gets bigger in utero and then is born this vein will eventually narrow (or close completely) to the point of not allowing the blood to flow to the lungs. Because of the pulmonary stenosis the baby will have to undergo all three surgeries. I am still hoping the pulmonary vein will remain open and not narrow any further so we can avoid the first surgery. Each surgery is a risk and the first one, the "helper" surgery to place the shunt, is still opening the chest on a 1 week old infant, with anesthesia. I am not exactly looking forward to that.

All in all Dr. H thinks the baby will continue to grow just fine otherwise and be full term. In this case, a full term baby is very important. The bigger, stronger and healthier the baby, the better chance we have. He also saw no signs of heart failure which is also good news. We go back in 5 weeks for the next visit. We will get to meet the surgeon who will be performing all 3 surgeries and also see the hospitals...Bayfront for where I will be delivering and ACH for where the baby will stay. With another 2 hour ultrasound...sounds like fun, doesn't it?

One good thing that I am able to do is participate in a study that Dr. H is doing in conjunction with USF regarding babies with congenital heart defects. Lots of studies are being done now to determine if babies who are compromised in utero have brain injuries significant enough to cause developmental delays. Researchers and doctors are making a big push (at least it seems to me) to try and minimize as much as possible any damage to the brain due to lack of oxygenated blood (both in utero and during surgeries). The only negative I can see at this point by doing this study is that the ultrasound/echo will take 2 hours. Since most heart defects are not genetic the hope is that by understanding how babies develop with this the doctors can get some clues on how to try an prevent heart defects from happening...could be something as simple as a more advanced prenatal vitamin. Medical research is completely fascinating and I am truly grateful so much has already been done to this point.

Other than that all is well. The boys are still chugging right along. Kyle is getting ready to be done with school for the year, as of June 3. We got him signed up for some weekly camps at the Imaginarium (a very cool hands on science museum for kids). Todd is still the same. Both had interviews this week at St. Francis Catholic school where they will be starting in August. Been a very busy week for mama.

Wednesday, April 22, 2009

What's New With the Boys

So, since my last fews posts have not had any pictures I thought I would put a few up and also tell what the boys are into these days.

Kyle being 5 and 1/2 now...goodness, sounds soooo such a big boy now. He rides his bike everywhere, has learned to roller blade, can snap and whistle, tells me my belly is not fat it is just the baby, wants to kiss and hug my belly because he loves the baby, is so dang smart it is scary (to me at least), can write his full name and simple sentences, is reading (all by himself...), loves books and movies and video games (when we let him play them), argues with us ALL the time, never takes no for an answer, loves Nascar and wants to race go carts, still loves his little brother and still is wide open all day (he has two speeds super fast and asleep).

Todd is almost 4 (oh my!). He is still my super sweet little boy (even though he no longer even resembles a little boy). He wants hugs, kisses and snuggles all the time and always wants to sleep in my bed. He LOVES sports, always asks to be outside because he wants to play baseball, soccer, basketball (his new favorite). He still lets me call him Toddles, is learing how to snap and whistle, is learing how to read, can write his first name all by himself, does awesome on his skut balance bike (almost ready for his own big boy bike), has also learned how to roller blade, still takes an afternoon nap everyday, still sucks his thumb (only when he goes to sleep), still loves and sleeps with a blanket (he calls them all blankee...have no idea why), loves books (insists on taking a new one to school everyday), will watch movies but only the ones he really likes, will watch tv but is the only male in my house who does not become comatose when in front of it, still idolizes his big brother, is major stubborn and has quite a temper and the only friends he talks about from school are his girl (pronounced gri-eel) friends. He is super funny and makes us laugh all the time.

We had a great Easter. Paige, Zane and PG were able to join us for Easter dinner. Mama got a ham, made potato salad. Paige did veggies, peanut butter pie and fruit for the angel food cake I made. I also helped with the potato salad. Kiddos all had a great time. The boys got to do an egg hunt at the house after church and then later watched Z do his egg hunt after we ate.
Last weekend we went to a local butterfly garden. Was not too sure how the boys would do but they loved it. Bought the family membership so I am sure we will be going back a lot. The boys saw lots of buterflies, got to see one that just hatched and got to see/hold a caterpillar. The ice cream afterwards did not hurt either.
Kevin and I are still moving forward. The baby is still doing fine. We will be going to St. Pete this coming Monday for our next appointment. I will do my best to update after that appointment. We are hoping that everything is still the same, we do not want the doctor to see something worse.

Tuesday, April 14, 2009

More thoughts on baby

Twice today I was asked, "so, what are you having?" I do not know how other women feel but I feel this question to be somewhat personal in nature. Ranks right up there for me with total strangers touching my belly...puts me on edge. Especially when that is then followed by, "oh, you do not know, are you going to find out" and so far my personal favorite, "are you hoping for a girl, with 2 boys and all." Maybe knowing that this baby has a major heart problem and all is tainting my outlook. Maybe it is because I am a private the point most people think me aloof or cold. Maybe it is because the last thing I want to focus on right now are the problems in this pregnancy. I don't know but I feel that if I wanted you to know details about my pregnancy, I would tell you. I feel out of sorts and uncomfortable answering these questions as the two people who asked are people I know but they are not friends and/or family. Obviously we are telling people the sex of the baby but I still have a hard time answering the question when asked.

I am now in my 21st week. My belly has really expanded and the baby is really moving around a lot. I am feeling tons of kicking. I think somehow I am still in denial (it is easy to do when the baby is not here yet).

Every day I cry.

I cry because I am constantly scared of what the future will bring. I dread knowing I have to go through countless more ultrasounds and echocardiograms. I wonder each time if the doctors will find something even worse. I dread having to go through what I do know and dread that which I do not know. I already know I will have to deliver the baby in St. Pete, at an unfamiliar hospital, with a doctor I do not know (not my own ob), with a c-section which will prevent me from going to even see my baby for hours possibly even a full day due to the baby being immediately moved to the pediatric cardic icu at All Children's. I have no idea if I will be able to nurse the baby due to eating issues. I know that the baby will spend at least 4 to 5 weeks in cardic icu without knowing if the baby will survive the first surgery or if we will be in the hospital even longer than that. I am scared that I will not feel bonded to the baby as I am constantly scared of losing the baby. I know I will be in St. Pete for weeks/months with the new baby without Kyle and Todd. I know I will miss the first day of school for Kyle and Todd. At a new school for both of them. I panic that I am sacrificing the good of the whole for the good of one. I am terrified that somehow my insurance will not cover all the medical costs and even it if does we will rack up tons of debt in medical bills. When we can least afford to do so.

With so much going on I find it very hard to talk about the fun stuff, like the sex of the baby. I cannot ask why, all that would accomplish is anguish for me. I cannot focus on people who do everything wrong during pregnancy and still manage to have a completly healthy baby. There are no answers. There is only faith. And hope.

Thursday, April 9, 2009

What the...?

Todd often gets the label of being the shy, timid baby because Kyle is SO dominant. However, if you ever believe for one moment that Todd backs out.

We have recently been having problems with Todd eating dinner. The child is starving when he gets home from school so I have a deal with him that he can have 3 small snacks and no more. If he then does not eat dinner he can only have 1 small snack the next day. He also is not allowed to have any "treats" after dinner. Kevin gets even worse...he says if Todd does not eat within a reasonable time frame he cannot have the treat either.

The other night Todd was being a pain again with not eating dinner. We had all finished and Kyle had happily gotten his treat and was already brushing his teeth. Todd, stalling as usual finally finished his dinner. He took his plate/cup into the kitchen to Kevin and asked about his treat. Kevin started on the "you did not eat quick enough" speech...Todd was quite indignant. Gesturing quite rapidly while still holding his plate he is telling Kevin...."but look...I ate it all...Daddy, what the hell?" Perfect context (of course) with a perfect facial expression.

I looked at Kevin to see if I heard correctly. By this time Kevin is trying not to laugh but was just way too hard. If you could have seen his face...oh man. After Todd got his treat and we stopped laughing I had to inform him about not using that language and if he did it again he would get the mouth with soap treatment.

And, I do not have any scheduled doctors appointments for the next two I will not have any updates on the baby until then. Actually a relief to not have to be at a doctor's office for a bit.

Tuesday, April 7, 2009

Baby Update

First, thank you all for your understanding and patience while Kevin and I have been going around and around getting answers and figuring out where we go from here.

Second, I am not posting here to avoid talking to anyone. Please do not feel any less of our friend if you are reading this instead of having personally talked to us. This is quite honestly the easiest way for me to communicate without having to tell and retell what is going on.

Third, thank you for caring and praying for us even if you were not exactly sure why. Please keep praying...we need prayers. I will try and explain what I know but I will of course leave things out.

March 18 -
I went to my regular scheduled appointment at Maternal Fetal Medicine. I am seeing the high risk perinatologists because I will be 35 when the baby is born. That is the only reason. I have no other risk factors making me high risk. Without this appointment, we never would have caught the problem. As Kevin and I were watching the screen as the ultrasound was being conducted we did not notice anything unusual. Seemed like all was fine...except the sonographer kept looking at the heart...for a very long time. The doctor came into the room twice to see the screen as the sonographer was looking as well. When he came back for the third time he was there to talk to us. He told us there is a problem with the baby's heart. A very serious problem. Since we were in shock he wrote down what he suspected was wrong...aortic atresia, ventricular septal defect and then dandy-walker syndrome. I am very thankful Kevin was with me. The perinatologist could not really answer the few questions we had...Kevin asked who could. We were referred to All Children's Hospital in St. Pete. I know most people (including me) have no idea what this suspected diagnosis means. Here is what it means...when discussing options with the perinatologist his first suggestion was termination. We were stunned. The names sounded horrible but what are we really looking at????

March 23 -
I return to MFM for a follow-up appointment and for an amniocentesis. This time we saw the head perinatologist. He is supposed to be the best and he is. He confirmed the original diagnosis and did the amnio. He put a name and meaning to the diagnosis. Hypoplastic Left Heart Syndrome. This is the worst of the worst of congenital heart defects. He said his opinion was that there would be no functioning left heart at delivery. Without major open heart surgery the baby would die. I followed through with the amnio, mostly to get answers.

March 24 -
Kevin and I had the first (of what will become many, many, many echocardiograms) on the baby at All Childrens Hospital. We were not too hopeful for this ultrasound or our meeting with the Pediactric Cardiologist. After an hour the sonographer was finally able to get some good clear shots of the baby's heart....stubborn little bugger kept putting hands or arms across the body covering the heart or turning completely around and hiding. We had our consultation with the medical director for the cardiac care team. This doctor is awesome. When I say awesome...I mean he is one of the best in the country if not the world in his field. He looked at the baby's heart and diagnosed...Double Output Right Ventricle. Not the worst of the worst but still an extremely serious congential heart defect. Here is the HLHS there is no left ventricle in addition to the aorta and aortic arch not being fully funtioning/attached. In DORV the aorta and aortic arch are fine it is just that there is only one ventricle to pump the heart. DORV does not require full on open heart surgery at birth...small relief. DORV does require a sequence of 3 soon after birth to place a shunt between the main arteries to keep blood flow to the lungs, one around 6 months to replace the shunt with a surgical fix between the main veins and the last one around 2 years of age to complete the full surgical procedure that will allow one major vein to connect to the heart and one to connect directly to the lungs. Eliminating the need of the one ventricle heart to pump blood to both the lungs and the rest of the body. In no way is this a cure. The baby's heart will never be normal. This is a way to provide a way for the baby to grow and develop and have a relatively normal life. Predicted life span is around 40.

March 25 -
I get the results from the rapid testing from the amnio. There is no indication of a chromosonal issue. All the chromosones are there. No downs syndrome, no trisomy.

April 1 -
I get the full panel results from the amnio. Confirmation that there is no chromosonal problem.

April 2 -
Kevin and I spoke to the cardiac team nurse with some additional questions we had. We got the answers we were looking for. There are still major risks to any and all all of the surgeries. There is still great risk of problems and complications while the baby is in utereo. Our management and treatment plan all hinge on my carrying the baby to full term with no chromosone issues and normal development of the baby.

April 6 -
We have our next appointment with the perinatologist at MFM. Have an ultrasound and discussion with the head doctor again. He scared the crap out of us. All hope I had from the doctor at ACH was gone. MFM doctor says everything looks the same (which in this case is good) but there are new studies showing brain injury in children with these types of heart defects and surgeries. The doctor at ACH touched on this as well but the MFM doctor implied there could be many more problems that ACH was not telling us (like cerebal palsy). Doctors not on same page...really not do you decide which expert you trust the most.

April 7 -
Spoke with the ACH nurse again. She confimed what we had learned on our first visit. Other than the heart, everything else looked as if it was developing normally with good blood flow to the brain. Grrr....
Got the last of the amnio results...a sequence with a small deletion on the number 22 chromosone that shows quite frequently with heart defects...and problem. There is no 22 deletion.

So. Here is what we face. A baby with a very serious congenital heart defect. One of the best pediatric cardiac teams in the country to manage and care for the baby. A very early diagnosis allowing for better monitoring of the situation. Two experts that may not exactly be on the same page. Still a lot of possible risk and complications that will not be known until delivery and/or for some time after birth.

What we really need. Lots and lots of prayers. They are already working.

Our baby (right now) has only one problem...congenital heart defect. No chromosone issues that are typically linked with DORV. The baby is a fighter.

Please pray for this baby to develop normally with good blood flow to the brain. We need for this baby to be otherwise healthy and full term to have the best shot of surviving the three surgeries with the least possible side effects and/or complications. The boys do not know of these problems with the baby. We have chosen not to tell them as it would only upset them and not do any good. They will learn all when it is necessary. We also do not want to get them in the habit of treating the baby special or different...from all indiciations the baby will be relatively normal and we need to keep that normalcy in our lives. If you have questions we are willing to answer them so please ask. Again...thank you for allowing Kevin and I our space as we found out answers and came to terms with what we are facing.

And Kyle was right...he is getting a baby sister. He knew all along.