1 Corinthians 13:13

And now these three remain: faith, hope and love. But the greatest of these is love.

Tuesday, May 31, 2011

Nashville here we are


We arrived yesterday afternoon in Nashville. We left Milwaukee around 8:15 am- we had to deboard our plane due to a "fatal error" with the altimeter and reboard another plane. The flight was about 1 hr 8 minutes- smooth take off and landing. Steve experienced some vertigo with take off. We landed in Kansas City and had a 2 hour layover. The baby was very active the entire flight - lots of kicking. (not that it matters to most but they actually had real toliet paper at the Kansas City airport- those who have used the bathrooms in Milwaukee would be jealous). We left Kansas City at about 12:20 and landed in Nashville around 1:40. The 2nd flight was uncomfortable for me- I developed a cramp in my right side that left my abdomen in a constant state of contraction and I began to have pubic bone pain off and on- the baby was still kicking and moving a lot. Normally if I have any discomfort I can lay down and the pain goes away but I think being stuck in one position was the culperate. The take off and landing was still smooth. One thing I did notice from other take off and landings that I have experienced while being nonpregnant- is that when you are pregnant - your abdomen shifts slightly and puts lots of pressure on your bladder during that time period. Word to pregnant women definetely make sure your bladder is empty before getting on the plane. I am grateful for being able to fly- other than alittle discomfort on the 2nd flight- it was a great experience and it was the first time Steve and I had flown together. Thank you again to Dave and Marcia who made flying possible for us. Steve has been spoiling me and not letting me lift or carry anything- quite a feat with luggage.

Yesterday it was 95 degrees in Nashville and today it is around the same. Steve and I feel spoiled by the weather- it feels like we are back living in Tampa again. We found Vanderbilt University and Medical Center yesterday. Very easy to find off of West End Ave. The medical complex is very large (makes our new St.Mary's building look like a postage stamp). There are a lot of signs around the complex which helps with navigation. We have our evaluation tomorrow. I will make another entry tomorrow regarding the evaluation ( I will try to add as much detail as I can for the other Moms that will be coming to Vanderbilt for the same evaluation). Our hotel is on West End Avenue about 3/4 of mile from Vanderbilt. There are 3 Starbucks surrounding the drive to Vanderbilt from the hotel - 2 on West End and one on the other side of Vanderbilt- I am adding this tidbit as wi-fi access at our hotel is terrible. Also all of the parks in Nashville have free wi-fi. There is a large variety of places to eat and shop at. There is also a small grocery store named Apple Market on West End Avenue also if needed - our room has a small kitchette with full size refridgerator, microwave, kitchen sink, and two stove top burners- this is a very good thing as we can not afford to eat out frequently. If you continue down West End Avenue into the downtown area- there are several blocks of gift shops, bars and grills with live music and a lot of western wear shops. Great place to just walk and take your mind off of the upcoming evaluation. For the men - at the end of West End Avenue right across from the Hardrock Cafe you can sit in a park that overlooks the river and look longingly at the football stadium.

We miss our girls and the dogs a lot. We keep taking pictures of everything we think the girls would like to see. We stopped at Centennial Park yesterday as they have a replica of the Parthanon that you can walk around- we didn't go inside for the tour. I think the tour is $6 for adults. The replica will be of great interest to Alicia as she loves the movie Percy and the Lightening Thief.

Saturday, May 28, 2011

Medical record ultrasound reports


I picked up copies of our ultrasound reports to take with to Vanderbilt. I will transcribe the oldest report first- the one that the spina bifida was first detected on.

With respect to fetal anatomy:
Abnormalities in the head were noted during this scan; please see the anatomy comments. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidney appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see anatomy comments for further details. Abnormal extremities: please see anatomy comments for further detail. The placenta appears within normal limits. There is a 3 cord vessel with normal insertion site.

Anatomy comments:
The following anomalies were noted:
Meningmyelocele- A fetal neural tube defect was noted in the lower lumbar region. The defect was studied using 3D rendering in the skeletal mode. The defect appeared to arise at L4.

There is an associated Arnold Chiari Malformation. There was also bilateral clubbing of the lower extremities noted. There was movement of the fetal extremities at the level of the pelvis and the knee. There was NO evidence of movement at the fetal ankle. It should be noted the lateral ventricle measure 5.4mm which is within normal limits for this gestational age.

There were NO other abnormalities noted that would suggest a diagnosis of fetal chromosome aneuploidy.

Singleton IUP
16 wks 4 days by this Ultrasound (EDC=October 7,2011)
17wks 2 days by dates (EDC=October 1, 2011)
Variable presentation
Posterior placenta
Estimated Fetal weight = 0 lbs 6 oz
Arnold Chiari Malformation

Ultrasound from 5-26-2011

With respect to fetal anatomy:
The fetal cranium appeared normal in shape. The choroid plexus was well visualized, the lateral ventricles were not dilated and the midline structures were not deviated. The cerebellum and cisterna magna were visualized. The fetal face appears normal. Anatomy of the fetal thorax appeared within normal limits. The cardiac size and structures appeared sonographically normal at the four chamber long axis and short axis views and cardiac rhythm was regular. The abdominal cavity appears normal. The fetal stomach appears normal. Both kidneys appear within normal limits. The fetal bladder appears normal. The abdominal wall appears intact. Abnormal spine: please see the anatomy comments for further details. Abnormal extremities: please see the anatomy comments for further detail. The placenta appears within normal limits. There is a 3 vessel cord with normal insertion site.

Anatomy comments:
The following anomalies were noted:
Meningocele- a low lumbar neural tube defect was seen. It appears to arise at L4. There was NO associated fetal ventriculomegaly. The lateral ventricle measured 7mm. The cisterna magna measured 4mm. The cerebellum appeared slightly displaced posteriorly. The fetal cranial shape was consistent with "lemon sign".

Talipes- bilateral clubbing of the lower extremities was noted. There was evidence of movement of the lower exptremities at the level of the knee.

The amniotic fluid volume was normal. There was NO apparent adverse effects from the amniocentesis.

Singleton IUP
20wks 4 days by this Ultrasound (EDC=October 10,2011)
21wks 5 days by dates (EDC=October 1,2011)
Breech presentation
Posterior placenta
Estimated fetal Weight = 0 lbs 14 oz

Thursday, May 26, 2011

Today's ultrasound


We had one more ultrasound done today to check for any changes before heading out to Vanderbilt. Rachel was very active the entire ultrasound and showing off how she could bring both her knees up to her stomach and then kick them out. That was good to see. Both of her feet are definitely clubbed but it was still nice to see all 10 toes. There was a slight improvement in her Chiari II malformation and again (blessedly) no signs of hydrocephalus and a normal appearing brain. Her femurs continue to be growing at the appropriate rate for the pregnancy also. Rachel did turn over and the doctor was able to get better measurements of spine where the spina bifida is. The lesion does appear to be L4-L5. Both kidneys and her heart appear to be normal also. Steve and I were very happy to hear about her heart appearing normal as this is one of the qualifications for having the fetal surgery done.

Tuesday, May 24, 2011



As the time is quickly approaching for Steve and I to travel to Vanderbilt- I wanted to pause for moment and thank all of our family, friends, my co-workers and Steve's classmates for all of the emotional support and encouragement they have given us. This is a situation we never thought we would find ourselves in and I can not express deeply enough how much everyone's support means to us. It warms our hearts and I hope that one day I can return the support to someone else in need. May God bless you all and keep you close to his heart!

Saturday, May 21, 2011

Vanderbilt Medical Center Call

April 26, 2011

We received our first phone call from Vanderbilt Medical Center the day following our ultrasound. The staff was informative and easy to talk with. We decided to continue on the journey to pursue the fetal surgery for Rachel. We set up appointments for further testing at Vanderbilt to see if we qualify for the surgery. One of the requirements for the surgery included the need to have an amniocentesis done to rule out any other defects and check if Rachel is a viable fetus. The thought of the amniocentesis being done made me feel more nervous as I have read horror stories of women having miscarriages after having this procedure done. In the grand scheme of things having an amniocentesis done is very minor compared to the surgery.

April 29, 2011

I was very nervous prior to my appointment for the amniocentesis. Steve took me to my appointment and was allowed to be in the room during the procedure. I had the amniocentesis done by the same doctor that performed my ultrasound. I was comfortable with his skill level with procedure as my other OB doctor had stated this doctor was one of the best in southeastern WI. Prior to the procedure we were given a list of things to watch out for post procedure and the risks involved with miscarriage. The more I hear this word- the more I despise it. It is an ugly thought and my heart truly goes out to the mothers that have experienced it. (to the mothers- read the book Heaven is for Real- your babies are waiting for you)

The doctor began by using ultrasound to identify an area of fluid away from the baby. After identifying the target area, the nurse helped prep the sterile field and the doctor scrubbed my abdomen with betadine (which thankfully I did not have a reaction to as I am allergic to both latex and shellfish). The doctor uses the ultrasound the entire time as the baby was very active at this time ( I closed my eyes during the procedure as I did not want to see the needle in my uterus on the large screen in front of me- crazy I know- I can poke other people but can not stand to watch myself being poked) The needle feels like a small pinch when it is inserted- after the pinch you feel pressure at the injection site- similar to if someone was pressing down on your abdomen and not letting up. The doctor filled up 3 vials of amniotic fluid and then removed the needle. The entire procedure took less than 3 minutes but I was a nervous wreck the whole time. I was given a written excuse to miss work following the procedure. It takes up to 48 hours for the small hole in the amniotic sac to repair itself.

After the procedure I was sent downstairs to our lab to have my rH factor tested for sensitivity and if needed would receive a shot of Rhogam as my blood type is A- and Steve's is B+. Shortly after having my blood drawn I began to feel slight cramping and dizziness. It would take up to an hour to have the results of the blood draw before I could be given the Rhogam if needed. I must have looked pretty pathetic in the lobby waiting for my results with my head in my hands as one of the lab techs noticed me. She quickly found a wheelchair and found a room for me to lay down in while we waited for the results. She was very helpful and her kindness was much appreciated. I ended up needing the shot of Rhogam- which I was positive I would as my last injection of it was after Alicia was born 9 years ago.

Steve took me home after the injection (which felt the same as our annual flu shot required in healthcare workers). Both Steve and the girls took great care of me following the procedure and ever since then. We continued to do more research on spina bifida and fetal surgery. We were blessed with other family members that did research also and I would personally like to thank my sister-in-law Pam for finding the spina bifida group on the baby center website. This group has been a comfort to us and has provided so much hope for Rachel's future. I love to read the blogs of the other families that are experiencing spina bifida also. Their kids are amazing!!!!

Amniocentesis results show a "normal female fetus". I have a copy of her chromosomes which I think is very cool to look at.

Friday, May 20, 2011

Devasting news

April 25, 2011

We had been counting down to our ultrasound appointment that was to occur the day after Easter. Is it a boy or a girl? What names should we use? Will the girls need to share a room if it's a boy? The girls were excited thinking about nursery themes and future toys that would be needed depending on gender. Both wanting to give the baby some of their things. They wanted to know where we would place the baby's highchair around the dinner table- they had watched the movie Ramona and Beezus and remember the scene where the baby spits peas all over Ramona. As it turned out, when the big day arrived the girls and Steve were all off of school and we were able to go to the appointment as a family. Steve and Breanne were guessing it was a girl and Alicia and I were guessing it was a boy. My guess of a boy comes from everything being so different with this pregnancy- seriously when are some of the symptoms going to calm down?

The ultrasound was done at the hospital that I work at in their Perinatal Assessment Center. The doctor performing the ultrasound was very kind and talked with everyone before beginning the ultrasound getting to know each of us. The ultrasound was to last 30 minutes and up to 3 hours depending on the findings. Ours lasted 1 hr and 30 minutes. The doctor had been focusing on an area on the baby's lower back but at that time I wasn't able to tell if he was focusing on the back or the kidney's. I had a passing thought while he was checking that area that the baby had spina bifida because I have an aunt who was born with it and Steve had a cousin that was born with it that died shortly after birth due to the hydrocephalus. My thought left soon as he continued to scan other areas of the body. Part way through he announced that it was a girl. I was definitely wrong on the gender. When he was done, he had asked the girls to wait in the waiting room while we heard the results.

The doctor began with asking questions regarding past medical histories of both of our families. He then told us the stats for downs syndrome with my "old maternal age". He in a round about way asked what we would do if the baby had downs or another birth defect. We had stated that we would love the baby just like we love the girls. He then told us that the baby does not have downs but a different birth defect was present. He confirmed what I had originally thought during the scan- the baby has spina bifida starting at the L4 level of her spine. He also stated she has a hind brain herniation and I finished his sentence by stating she has a Chiari malformation. (I also work as a medical assistant in the Chiari Clinic in our hospital once a week). We were also told the baby has started to show signs of clubbing in one of her feet. On the bright side, she has a normal appearing brain and no signs of hydrocephalus at this appointment. The doctor did give us more information on spina bifida including the problems with bowel and bladder and the ability to ambulate. He also rescanned the baby for us and showed us where the spina bifida was located and showed us the Chiari II and we were able to see that she was moving her hips and knees. We were also given information regarding fetal surgery to close the spine while in utero and information regarding closing the spine after birth. Either way the baby would need to be delivered via C-section at 34 weeks of pregnancy to prevent more damage from occuring to the spine as the space would getting smaller in the uterus as the baby grows. Both Steve and I were in instant agreement that we should try to have the fetal surgery done. The doctor informed us that the surgery was done at 3 locations in the United States - Philadelphia, Nashville and San Fransico. Since we wanted the surgery, he put in a referral to Vanderbilt Medical Center in Nashville. The doctor was very comforting and answered any questions we had- his bedside manner is very good.

I was in such shock and despair after the ultrasound that I had a very difficult time holding myself together in front of the girls and for the fact I was at my place of employment. After the ultrasound I walked up to my nursing unit while Steve and the girls waited for me and I spoke with my supervisor regarding the ultrasound findings. She was very support of and it helped me to be able to talk with her. I requested a PTO day for the next day as I knew I would not be able to hold it together in front of the patients. As my family and I walked out of the hospital, we decided that were going to name the baby Rachel after a loved person in the bible. Steve drove us home but the normal drive from Milwaukee to West Bend seemed to have stretched on for hours. I was crying the whole time and he was wiping away his own tears- the girls were worried because they knew something was wrong but not what was wrong. We stopped by Steve's mom (MaryEllen) to talk with her while we had the girls play outside. She knew the news was not good by looking at us and just held me while I was crying and Steve was telling her what was found. Being a RN she agreed that the fetal surgery was the best option and was very hopeful regarding the other issues such as the need to catheterize the baby and the use of braces. She had helped take care of her sister Jean's baby that had been born with the spina bifida and hydrocephalus but the medical advances (over 50 years prior) were not what they are today. When we got home I had called my parents and updated them- my dad was weepy as he had helped take care of his sister that was born with spina bifida and remembered all that she went through- my mom was heartbroken also but very optimistic about the future for Rachel. Later that evening we did tell the girls that the baby has a injury on her back that she needs surgery for- we left it with as simple of an explanation that we could. They seemed to understand and were very excited to have Rachel in their lives (later that night and to the current date when they play dolls they already have one of the dolls named Rachel and always make her the hero of their play--very sweet)

Beginning of our journey

January 24,2011

I had missed work today because of feelings of nausea, dizziness and vomiting. As the morning continued to on- I had a thought- could I be pregnant? At first I dismissed the thought- we had been trying to conceive # 3 for several years and I was to the point of accepting that Steve and I would only have Breanne (11) and Alicia (9). We had even talked about adopting a child or becoming foster parents after Steve finished schooling for his Bachelor's degree in IT Network Security. Then the more I thought about it- I was feeling like I did at the beginning of my pregnancy with Alicia. Later that day, I had bought a home pregnancy test thinking it was going to be a complete waste of money. I was shocked to see the positive results. I thanked God for the blessing that our family was given. I remember that Steve was at school that day and I couldn't wait for him to return home so I had emailed him the news. He was shocked also. I had also called my parents Glenn and MaryAnn and told them the news. My dad's voice was weepy and my mom was excited- she knew we had been trying for a very long time to have another child. It was actually overly joyful to be going to the store to buy prenatal vitamins again.

The next day I went to work but was feeling still poorly with the same symptoms I had the previous day but as the morning went on the dizziness went on and my co-workers had helped me lay down in one of our empty rooms. Bless their hearts they did everything they could to help me be comfortable. After a while, I began to feel alittle better and decided to go back to working. Bad idea- I ended up with more dizziness and palpitations. Fortunately for me, the Emergency Department was only an elevator ride away. I ended up receiving two liters of fluids for dehydration and honestly did feel better after receiving the fluids. That evening Steve and I told the girls that they were going to be big sisters- they were also surprised and thought we were pulling a joke on them.

When I was discharged from the ED I was instructed to make an OB appointment for a few days later to check that the dehydration was keeping at bay. I made and went to the appointment a few days later. It was a terrible appointment- while my labs and symptoms were confirming a pregnancy the early ultrasound showed an empty uterus. All of my joy disappeared in an instant- I thought I was going to be having a chemical pregnancy and be some crazy lady that thinks she is pregnant when she really isn't or worse yet have a pending miscarriage. The word miscarriage scares the life out of me- Steve and I thought I had miscarried this past June at about 6 weeks- I had all the signs and symptoms of early pregnancy but didn't take a pregnancy test to confirm. Was the same thing happening? My OB doctor decided to schedule some more blood work to test my progesterone and hcg levels over the next few weeks. I was to go back in 3 weeks for another ultrasound to "see if we had a keeper or not".

Very stressful waiting game- every twinge I felt I was sure I was starting to have a miscarriage. My hormone levels continued to increase as they should which did make feel alittle relief but yet still worried as I could be experiencing a blighted ovum. When I went in for the next ultrasound- complete JOY- my doctor found the baby instantly and there was both a visible and audible heartbeat. He had estimated the pregnancy to be at about 7 weeks at that time. We scheduled my first OB appointment for 10.5 weeks to include another ultrasound and all of the other not so fun stuff that goes with pregnancy exams. I was also given the "old maternal age" speech as I am 34. Geez!

I had been given a prescription for Zofran as the nausea and vomiting continued along with the majority of early pregnancy symptoms. I had very little nausea with Breanne but had developed preclampsia and had labor induced at 36 weeks. She was 4 lbs 14 oz. With Alicia I had a lot of morning sickness that would occur only in the mornings (threw up in the shower often) but was able to make it to full term with her. She was 6 lbs 10 oz. With this current pregnancy the nausea would last almost all day ( as I am writing this at 20w5d I am still throwing up in the mornings but at least it is down to 1-2 times per week).

At the 10.5 week appointment the baby was continuing to grow and they had taken all of the normal labs but had found a cervical polyp. The doctor removed the polyp but stated I would start to have cramping and bleeding for the next several days and it could cause a small risk of miscarry but if the polyp was left it would continue to grow and cause more problems later in pregnancy. I had missed work the following day due to the cramping and spotting that started. Again with every twinge I was a wreck. I was given more of the "old maternal age" information and stats. I turned down further testing for downs syndrome and other abnormalities and opted to have a detailed ultrasound at 17 weeks and another at 20 weeks to view the heart. Even if the baby had downs- we wouldn't do anything differently but love them as we love the girls.

The girls loved looking at the baby's 10.5 wk ultrasound picture. It shows the back of the baby's head and body and the yolk sac positioned above the baby's head resembled a halo. I had bought a package of newborn diapers at the girls' request as they had wanted to start practicing changing diapers. Needless to say- every Webkinz in our house is now sporting a diaper. They then decided though that if the baby was a boy- it couldn't ever be naked (even to change diapers or take a bath). Very funny! I took the girls with for my next appointment and they got to hear the baby's heartbeat with the Doppler.