Decision's Made

May 19, 2008- 26 weeks

I talked to Ashley this morning about what Dr. Gray had intended with the website, she said the Dr. Gray just wanted us to have as many options as possible. He thought that we might meet the qualifications for the fetal surgery but it wasn't that he thought that St. Luke's and Children's Mercy in Kansas City couldn't handle our situation, which is what I had thought in the beginning. After he saw that the liver had possibly moved up and the LHR was down from the previous ultrasound, he just wanted us to know all of the possibilities and didn't want us to feel like he was keeping anything from us that we might want. Ashley said that she could have Dr. Gray call us and talk to us further about it, but I let her know that after much discussion, Brian and I decided that this was not a real option for us. First off, they can never guarantee that insurance will pay for the procedure, especially with how picky my insurance is ( I have a HMO through St. Joseph and they are very specific on where they will pay) and second there is not enough research and evidence that says that this will really benefit our little girl. Also, it can be difficult on the mom and any fetal surgeries can lead to preterm labor that cannot be stopped. We have just decided that we are going to stay in Kansas City and whatever happens, happens. We trust that the doctors in Kansas City will do all they can for us. We will just keep praying that we are doing what is best for not only our baby girl but for Brian and I.

What's an Online Consultation?

May 16, 2008- 25 weeks 5 days

Today Ashley, the fetal-maternal coordinator at St. Luke's who has been helping us set up appointments and coordinating cares between St. Luke's and Children's Mercy, called and let us know that Dr. Gray wanted us to know about a website for a hospital that does online consultations. She wanted Brian's e-mail address and let us know the website that he wanted us to look for. I went to the website while Brian was at work and was shocked to see what I did. It was a fetal surgery site. Now if I remember correctly the doctors previously said that we were not a good candidate for this kind of surgery. I looked all over the website for the University of San Francisco and found out that they perform these somewhat controversial surgeries while the baby is still inside of me. As I navigated the site further and filled out the online application form which is free, but they charge 575 dollars to process it, and basically you don't know if you are approved or not. Further I would have to stay in California for 4 weeks by myself while they monitor the baby and I! In all this I never saw any statistics about how the survival rate is increased or how the quality of life after birth is improved. Also, I would have to have a Cesarean section because the cuff that they put on the trachea would have to be removed before the baby could take her first breath. This all seemed pretty scary to me, and for what reason. We didn't even really know if Dr. Gray just wanted us to have the information or if he thought that it would be a last resort for us to look into. I called Ashley back after I had navigated the website for over an hour and asked if she knew why Dr. Gray had wanted us to visit the website and she said that she had done some looking on it too and she was confused herself. She said that they had only sent one couple on for Fetal surgery and it was a cardiac patient. She said that she will call me back on Monday and let me know what Dr. Gray's intentions were. So much to consider, but we'll see. The website is: http://fetus.ucsfmedicalcenter.org/cdh/, maybe I just missed where they stated the increased prognosis and odds of survival, who knows.

ECHO and Childrens Mercy

Looks like a Vorthmann nose to me!
Heart on the Right Side - Stomach on the Left.

May 14, 2008- 25 weeks 2 days

1:00 today we went to meet with the coordinator at Children's Mercy in Kansas City and to meet the surgeons that will be performing surgery on our baby girl after she is born. We had a pretty hard time getting past the security guards at the front doors, but after that everyone was so nice. We met with the ECMO coordinator. ECMO is a kind of life support that babies with CDH sometimes have to go on if they are unable to oxygenate their blood enough by themselves ( which is my biggest fear). I have seen other babies on ECMO and the site is very sad to say the least. Anyways we will deal with that if we have to. The surgeon that we met with was very nice but made it a point to tell us over and over that they would not know how long it would be before she would have her surgery. That would be a day by day judgment call made by the surgeons and the neonatologists. He said that surgery is not the main focus, keeping the baby stabilized and oxygenated was. Surgery can wait and it could be up to a few weeks before she would be ready for the surgery.

We toured the NICU to see where she would be going as soon as she was transfered from St. Luke's since I cannot deliver at Children's Mercy, the baby will be transfered within about 2 hours after birth to Children's and I will have to stay at St. Luke's until I am stabilized, but that they do offer passes for moms to come over and see their babies as soon as it is determined that the mom is stable. At the NICU we met Sophia, a baby with CDH that was going to be soon going home from the hospital . She had been in the NICU for almost 2 and a half months, but looked so cute and seemed to be doing well. Her dad looked at Brian and said, "It's a long road, but it is so worth it"

2:45 and now it's time for the ECHO, to determine if there is any heart abnormalities that can be determined before birth. This is where they look at all the chambers of the heart and all other anatomy of the surrounding arteries and veins coming into and leaving the heart. This was yet another type of ultrasound. I guess the spicy chicken salad I had for lunch was a bad idea, because our little girl was on the move. She was kicking and punching and would not stop moving. They got most of the pictures that they needed but not all of them because she wouldn't really cooperate. Hope that is not a precursor of how she is going to be when she gets older!

Once again we were led to the "Crying Room" to discuss the results with the doctor. A cardiac perinatologist came to discuss what he had seen. He said that the ECHO showed a strong 4 chamber heart (good!), all vessels entering and leaving the heart in a normal manner (great!) and that the patent ductus arterosis PDA and the foramen ovale were both present and functioning (greatest!). Basically these two shunts are necessary during fetal life but close once the baby is outside of the mother. We just got as normal of an ECHO as possible which is the best we could hope for.

We took a quick tour of where I would be delivering (all the way at the end of the hall by my self in a huge room where there was enough space for the 12 or so doctors and nurses that would be there during the delivery) and the NICU where the baby would go until stabilized enough to be transferred to Children's Mercy. They said that as soon as she is born that they will call the Children's Mercy transport team to come get her, and they would stay at her bedside helping until she was stabilized enough to be transported even if it took 5 or 6 hours. They said that their transport team was one of the top the nation, and that Brian would have to follow right behind the ambulance to do paperwork at Children's Mercy, leaving me behind at St. Luke's.

During our walk through, Dr. Gray who had also looked as the ultrasound came to give us some more news. He said that it looked like on this ultrasound that the liver was indeed "up" (aka-super bad news), and the the LHR was 1.2. Wow, in a day of highs, this was an extreme low. These were both really bad bits of information. Things aren't looking as good as they were when we had walked in the door. Also, Dr. Gray said the the LHR the low level was 1.4 instead of what we had been previously told of 1.0, so I will have to research that more to determine what is right. He said that he wanted us to come back for another ultrasound in 3-4 weeks to make sure that she was growing, which she was she is up to 2lbs 2 oz. I couldn't believe how big she had gotten in 3 weeks. At the last ultrasound in Kansas City she weighted 1lb. 4oz. so she gained almost a pound! Also, they have been monitoring my amniotic fluid level, which can sometimes get high because the baby is unable to swallow the amniotic fluid as well because of the displaced stomach and bowel, but today my level was within the normal level.

Discouraged we made another appointment for June 18, 2008. Of course we were both frustrated because we had not thought that things would change so much in 3 weeks, but I guess, as the baby grows, so does the diaphragm in proportion, allowing a larger opening, and thus possibly the reason the liver looks like it is up. Brian and I decided the the LHR might be a little bit of a judgment call by wherever the click of the mouse is on the ultrasound picture, because it is so blurry and she was moving so much...hopefully this isn't going to be the standard, lower LHR and worse news each time we go. Another long trip home from Kansas City to say the least.

Regular Scheduled Check-Up

May 7, 2008- 24 weeks 2 days

I am still going for my regularly scheduled checkups with Dr. Feuerbacher. He was initially going to help deliver my baby at St. Francis but that is long since passed. It is imperative that I deliver at a Level III tertiary facility. That means that they have all the equipment necessary when the baby is born. As soon as she is born they are going to put a tube down her trachea and intibate her so she doesn't swallow any air into her stomach with her first breath. Then they will put a nasogastric tube in her nose to remove any air or stomach contents so her little stomach will stay as small as possible to give the lungs as much room as possible to inflate (since that is the biggest concern with CDH, the lung development).

Everything went well at the regular appointment. My urine test looked good, no UTI. Her heart rate was 146 which is about what it usually is. She runs between 138-147, which is in the normal range. Dr. Feuerbacher measured my belly, which is really growing. I am measuring about 25 which is right on track for how far along I am. I feel like my stomach his HUGE but everyone assures me that I am not and that I look so cute. I am starting to see it more and more, although it seems like at about 22 weeks I woke up on morning and had a volleyball in my stomach that wasn't there the night before! Still gaining weight, of course. I feel like i am going to Weight Watchers to weigh in every time I go to the doctor, but haven't done bad so far. Definitely not going to stay under my goal of 20 lbs, since I have gained 16 lbs already!! Oh well as long as the baby is growing, I will deal with the weigh after she is born!

I go back to see Dr. Feuerbacher in 4 weeks, and it is at that appointment that I will have to do my glucose tolerance test. Basically I have to drink the nastiest orange drink on an empty stomach to determine if I have Gestational Diabetes, which could lead to preterm labor which we don't want. We need her to stay in the oven as long as possible to give her little lungs every chance to grow as they can, but don't want to wait too long that I go into labor in Maryville, oh the tight rope we walk. Not too early, not too late. Still contemplating plans of bing induced a few weeks early at St. Luke's just to ensure it is a controlled environment and no suprises, but we will find out at a later date.

The Complete Results

May 6, 2008- 24 weeks 1 day

Once again I was off to school and Brian off to work. We were supposed to get the full amniocentesis results on Monday but since it was a weekend when we had the initial amniocentesis that it was going to take additional time to get back the full results. The test that we were waiting for was the results to determine if our baby had a very rare autosomial recessive disorder called Freyn's Syndrome which has been linked in babies that have CDH. Usually these babies have other physical abnormalities, but the genetic nurse counselor said that she had seen one other patient that everything looked good on the ultrasound besides the CDH defect and it came back Freyn's Syndrome. This syndrome is not compatible with life and all of our children in the future would have the same syndrome. This was the absolute worst case scenario. We had been praying so hard that this was not the case.

We had to wait until Tuesday afternoon for the results. The genetic nurse counselor didn't call until 4:20 and gave us the results. That the amniocentesis came back 100% normal with no genetic abnormalities what so ever. I was so elated. I immediately called Brian and let him know the news. We were so excited to be done with all the genetic waiting. It had been so hard on us, all the worrying that our baby may never be able to survive no matter how much we did. God was defiantly listening to our prayers. Now just waiting to go to the fetal ECHO to determine any heart involvement, which is pretty commonly associated with the CDH defect. Keeping our fingers crossed until then.

What a long weekend

April 28, 2008- 23 weeks

Monday morning and I am off to school as usual and Brian is off to work. Both of us with so much on our mind, the weekend had been in anticipation of today and the inital resluts of the amniocentesis. I had a test that morning that I didn't study for because I wasnt able to concentrate at all that weekend as we had gone to Iowa and told my parents the news. The genitic nurse counselor said that she would call us Monday morning with the results of the chrosome matching. What we were looking for was that all chromosomes had a match and that there were no triplet chrosomes also known as trisomy deformities. These are Trisomy 13, 18, and 21. These were our worst nightmare and were not compatible with life.

At 10:00 I called Brian and asked if he had heard anything yet, since they were going to call his phone instead of mine since I would be in class all day. He said not yet, but he would let me know as soon as he did. The next hours were torture. I was eating lunch at 12:30 and decided to call once agin, and again he had heard nothing but would call when he did. I appologized for calling so much while he was working but I just needed to know. Brian said he loved me and would call just as soon as he got off the phone with anyone with any news.

1:03 the phone rang and I got up and left in the middle of class (which i absolutley hate when people do, but at this point didnt care) and Brian gave me the news. All chromosomes are matched 1:1 and it is confirmed that it is a Girl! Oh My God what a releif. At least we knew that there would at least be a chance for her to make it. We talked a little bit longer and continuted our days eager to spend the evening celebrating or first hurdle avoided, but the lingering tests that would not be confirmed for at least another week were in the backs of our minds.

It's a Girl and CDH

Arms!

Sucking my Thumb!

Look at my Cute Face!

April 25, 2008- 22 weeks 4 days

What an early morning, we had to be in Kansas City at 8:00 which is a 2 hour drive from our house so we had been up since about 4:30 that morning. We were both really nervous by this time wondering what the day would reveal. Of course we got to St. Luke's early and had no idea where to go so I called someone I knew from work who had also gone to St. Luke's for her ultrasounds and told us that we needed to go to the Peet center. We found it, valet parked and began the registration process. We finally got to start the ultrasound at about 8:45 and of course I had to have a full bladder, it felt like I hadn't gone for hours. The person performing the ultrasound was a RN and she was so nice. She was taking pictures and measuring different things making conversation with us and she asked if we wanted to find out the sex. I looked over at Brian and said only if there is something wrong. She continued to take measurements and pictures and I could see that she was focusing on the chest area. She asked again and I said that Brian could decide that it didn't matter to me. He said the same thing, that if there were any problems that we wanted to know the gender.

That is when she looked over at us, placed her hand on mine and said "there is something very wrong with your baby, but she's a Girl." I was so devastated and excited at the same moment. I had secretly been wanting a girl whereas Brian wants at least one boy. My thoughts raced and I squeezed Brian's hand harder than before. She continued her measurements and kept taking pictures and told us that the doctor would be in in a minute to continue the ultrasound.

The doctor came in and began to look at the pictures the RN had taken and went ahead and began his own ultrasound research. He then revealed to us the our baby had a Diaphragmatic Hernia. That basically means that part of the diaphragm is missing and the the stomach contents have moved up into the chest cavity where the heart should be and the heart has shifted over to the right side. Right away I knew that this was horrible news. The doctor finished up his part of the ultrasound and escorted us to what I called "The Crying Room"

Brian and I sat in the room for what seemed like forever waiting for the doctor to discuss the results. Then walked in a Geneticists, she asked us a lot of questions about our medical history and the medical histories of our families. Because this defect can be linked with several chromosomal abnormalities, she encouraged us to have an amniocentesis to determine any genetic involvement. They told us all of the very worst case scenarios and ultimately gave our baby a 50% chance of survival

The doctor discussed with us the different things that they use to determine the severity of the defect and the chances of survival. He determined that we had a Left sided CDH, which is much better than Right sided as far as prognosis goes. Also, the doctor said that they use a ratio called the Lung Head Ratio: LHR which is a measurement of how well the Right Lung is developing. The doctor told us that they want to see the number at least above a 1.0 and that our baby currently had a LHR of 1.5! How reassuring. Also, at this time the doctor said that there doesn't appear to be any liver involvement which is a good sign that the hole in the defect may be small. To me it sounded like if we could rule out heart involvement and any genetic involvement that we would be doing as well as can be expected. So just have to wait for tests to determine total involvement.

I asked if there was anything that they could do enutero to fix the deformity, but the doctor said that it hasn't showed to be very promising, but there is one surgery that is very risky that involves placing a cuff on the babies trachea to build up pressure in the lungs to aid in expanding them, but the research was based for the very worst cases and that he didn't recommend it and we were actually not good candidates for the procedure.

After we had some time to take it all in and break down and cry for a while, the nurse came in and asked if we wanted to have our amniocentesis today or schedule another appointment for a later date. Of course we wanted to have it the same day to get it over with. Since we were having it on Friday afternoon, the initial results would not be in until Monday and with the final results for 10 days.

We left Kansas City in a daze with a follow-up appointment on May 14, 2008 to have a fetal ECHO to determine heart involvement. They said that I needed to continue to see my primary doctor for my urine tests and for basic appointments, but all other care would be transfered over to the Perinatology team at St. Luke's.

Another Ultrasound?

April 15, 2008- 21 weeks 1 day

I was with several of my friends eating in Kansas City when I got a call from our primary doctor's nurse that said the ultrasound didn't show everything that it needed to and that the Radiologist that reads the ultrasounds at our hospital thought that there might be a possibly displaced heart. I was shocked and met with my primary doctor that afternoon after I got back from Kansas City. I discussed it the Dr. Feuerbacher and he said it could be nothing or it could be something but we needed to go to Kansas City at St. Luke's to have a level II ultrasound. I guess that I didn't really think anything of it considering the Ultrasound technician said that she didn't see anything abnormal when she was taking the pictures.

I asked if we could wait until some time in May because I was just finishing up with RN school and had a lot of tests to finish up with and was still working and my schedule was so crazy. He said no that he wanted it to be done as soon as possible to ensure that nothing was wrong. He made an appointment for us to go to St. Luke's on the following Friday. I went home and told Brian the news, but we really didn't think too much more about it and just figured it was an ultrasound error.

Ultrasound # 2

Side Profile

Open Mouth

Giving the "Thumbs-Up"

April 9, 2008- 20 weeks 2 days! Half Way There!!

We had our second ultrasound to make sure that the baby was growing and that all the organs were in the right spot and working properly. This ultrasound was longer and they took measurements of the size of the baby's organs and made sure that the heart was pumping, the kidneys were working and just do an overall assessment of the baby. I thought my bladder was going to explode but I made it through. The ultrasound tech said that everything looked good but she couldn't detrmine the sex, which was fine with us because we still didn't want to know, well we did, but made it a point to wait until birth.

The 1st Ultrasound

Side Profile of Head and Body
Butt shot with Legs
My Whole body only 8" long!

February 20, 2008- 13 weeks 2 days

We had our first ultrasound to determine gestational age since we were unable to determine even closely our date of conception. From our estimations, we thought we were about 16 weeks along. After measuring and determining the weight of the baby, it was confirmed that the baby was only about 13 weeks along which changed our due date from August 5, 2008 to August 24 2008 which was a bit of a shock, the only thing I could think of was "that's 3 more weeks of the heat". Everything looked good on the ultrasound. At this point we didn't want to know the sex of the baby, we had always knew we wanted it to be a surprise. We left excited to confirm that there was actually a baby growing inside of me. During this initial ultrasound we could see the baby sucking its thumb and it even had the hiccups!

From the beginning..

December 20, 2007- 4 weeks 4 days

I am a nurse at St. Francis Hospital in Maryville Missouri, it is really small and had was working the beginning of my 12 hour shift when I knew that I was developing yet another urinary tract infection. So I called down to the clinic to get an appointment with my doctor during my lunch break to get some antibiotics. When I met with Dr. F. he asked me if there could be any way I could be pregnant. I told him that i had went off the pill in October and my husband Brian and I were ''just going to see what happened". He decided to do a pregnancy test, but I had no signs or symptoms so I just figured it was pretty precautionary.

Dr. F. came back into the room a few minutes after I gave my urine sample and said "Congratulations!". I said "I knew it, I can always tell when I have a UTI". To that comment he replied..."Yes you do...but you are pregnant!" Wow, what a shock. I was kind of in a daze considering that I wasn't at all expecting that sort of news. The next challenge was to determine how far along I was. Of course I couldn't remember the date of my last menstrual cycle, so we just made an educated guess and thought I was about 7 weeks along. Later that afternoon I called Brian and let him know the news, we were shocked but so excited!