Post Op Week 7 Appointment

7-26-2011

We had our post op week 7 appointment today. We made our 30 week goal this past Saturday. The next goal is for 32 weeks. Rachel was sleeping during this ultrasound but as soon as we rolled out of the hospital- she was active and moving around. She was doing her practice breathing exercises and had emptied her bladder for us. Her left ventricle measured at 4mm and her right ventricle was too small to measure today. She is doing great! During last week's ultrasound and again today our ultrasound tech noted artifacts at the skin level of Rachel's repair site. We believe that they are sutures from the surgery. I also have 2 sutures that have poked out of my incision- like mother like daughter. There is nothing to be done with the sutures at this point - they will be taken care of after delivery if they have not full dissolved by then. My amniotic fluid volume had increased to alittle over 15 and again there were no signs of separation of membranes or placental separation.

We had met with the pediatric neurosurgeon last week and today we had met with the lactation consultant. In two weeks we will get tours of the NICU, L&D - OR suite for the C-section and mom/baby floor. It is exciting to think we have only 7 more weeks to go but at the same time reality has set in that we are not completely prepared for Rachel. At this point I only have a few outfits for her, 2 bottles, 2 nukes, 2 blankets and a diaper bag. We will be blessed to be able to use a crib and changing table from other family members. I had purposely avoided buying baby items at the beginning of this pregnancy since I was always worried about a miscarriage occurring. In a way though, I am glad we waited to buy items since I now know we need to buy latex free items for her.

Post Op Week 6 Appointment

7-19-2011

Today we had our post op week 6 appointment. Rachel now has hair that you can see (if only I could tell if she was going to be a redhead like me or a blonde like her oldest sister or have brown hair like her daddy and other sister) She was opening and closing one of her eyes like she was winking at you and she was continuously moving her mouth like she was telling us something. Perhaps a good joke to go with the winking?She continued to be working on her "practice breathing" exercises. Her left ventricle decreased again to 4mm and her right ventricle stayed at 5mm. She is still in breech position with her ankles crossed- perfect for kicking my poor bladder. My fluid levels continue to be good and no signs of membrane or placental separation. We have about 8 more weeks of bedrest left. It is getting harder to get much sleep during the night- I have been having a lot of hip and knee joint pain due to pregnancy hormones and having ligament stretching pains in my sides. I can maybe tolerate laying for 30 minutes at a time before I have to reposition from the pain. Makes for a long night!

Post op week 5 appointment

7-12-2011

We had our post op week 5 appointment today. The image on this post is of her head and brain. Her chiari looks to have reversed itself and there was no banana sign detected during the ultrasound. Her left ventricle measured 6mm and her right ventricle measured 5mm- they peaked at 7mm last week. Hopefully they will continue to decrease and stay steady. She is estimated to weigh 2 lbs 11 oz currently. Rachel continues to do her breathing exercises and likes to keep in a breech position. My amniotic fluid levels measured good again (around 12.3), no signs of membranes separating or placental separation. I am still on a modified bedrest and taking it easy.

Post op week 4 appointment

6-8-2011

We had our post op week 4 appointment this past Tuesday. No changes from last week to report. Everything is continuing to look good at this time. We met with one of the nurse practitioners from the spina bifida clinic after our OB appointment. It was nice to physically see what a shunt looks like if she were to end up needing one. We also were able to see a urinary catheter also ( I am guessing by size maybe a 5 or 6 french) The urinary catheter is not a big deal to me as I am a LPN and have catheterized numerous people over the years- my husband on the other hand looked like he was going to pass out. Dealing with the reality of most likely needing to cath her is very stressful for him. I think like most other Dads in this situation, he is afraid of hurting her or doing something wrong that ends up with her getting a UTI. It was good to know that the hospital will provide a gel pack for her lower back to place in her car seat and if needed they have a bed style car seat that we can use also. The spina bifida clinic runs twice a month and all of the specialists that your child would need to see are scheduled to be there. Over the next two appointments we will be meeting with her neurosurgeon and the neonatalogist.

Tomorrow marks the 28th week of pregnancy which is a one of the first milestones for fetal surgery. If all goes well from this point- only 9 more weeks of bedrest.

On a crappy note I received a letter yesterday from my employer regarding my health insurance coverage. After the end of August I will need to pay alittle over $1600 a month for COBRA until I can return to work- which if all goes as planned will not be until mid November. Hmmm . . . . .

On one of the comments left on our blog I was asked why my family had decided to have the fetal surgery done. I will try my best to explain our reasons. When you first hear that your baby has a birth defect and the challenges that come with that defect- spina bifida in our case- you feel powerless and defective. You run all of the events of the pregnancy through your mind- searching for something you did wrong - something to place the blame on. You think about all of the "normal" things such as walking or riding a bike that your child may never be able to do. Your heart breaks with the anticipation of the challenges your child is going to face over their lifetime. Let's face it- it can be an ignorant and cruel world out there- even for a person with no disabilities. Your protective instincts take over and you become the biggest cheerleader for your unborn child. You spend hours researching the birth defect in depth. You read about other people's experiences- what worked well for them- what didn't work for them- ways they have adapted to meet their needs. You study the results of the MOMs trial in the New England Journal of Medicine. You speak with specialists regarding the birth defect. You learn about the risks involved with fetal surgery. Having the surgery is a very individualized choice- it is not for everyone. While you can not erase or cure the birth defect, fetal surgery gives you the opportunity to help prevent further disability. Amniotic fluid is very caustic to the open spine and will continue to eat away at the nerve endings causing more damage and disability during the remainder of the pregnancy. The open spine can continue to pull down and cause further hindbrain herniation (Chiari malformation) and block the flow of CSF causing hydrocephalus to occur. You still have the possibility of hydrocephalus occurring after fetal surgery but preventing the Chiari malformation from worsening is a major deal. The Chiari malformation can cause problems with breathing and feeding which could result in the need for a trach or feeding tube. We chose to have the fetal surgery with the understanding that the surgery is not going to cure our child's spina bifida but it can help prevent further disability from occurring. We want to give Rachel a chance for the best possible outcome in her life. Fetal surgery gave us the opportunity to dissolve the feelings of being powerless and to do something positive for our unborn child.

Post Op Week 3 Appointment

6-28-2011

Our post op week 3 appointment went well today. No changes from last week. Rachel's ventricles continue to measure normal with no signs of hydrocephalus. She was doing her "breathing exercises". We were able to get a nice view of the repair done on her spine. We also got our first full view of her face - she was smiling and has chubby cheeks. Ahhhh - so sweet- I needed that view of her. She was positioned on her knees and bouncing her butt up and down at times. My amniotic fluid levels continue to be good and no signs of membranes or placenta separating. We have scheduled our C-section for September 13th at 10 a.m. if all continues to go as planned.

I had my second glucose testing done last week Thursday. It was the 3 hour test. I had the orange flavored drink- tasted like an overly sweet melted orange popsicle. I did have the side effects of a headache and nausea from the drink. It amazes how much blood they took at each interval just for testing your blood sugar levels. All of my levels were good and well under the cut off marks each time. No gestational diabetes for me!!!! Yeah!! I was worried about that one since my maternal grandmother had developed type II diabetes as an adult and my dad has been borderline on his A1C testing for a long time now.

We took the girls with us to our appointment. They were very good and enjoy looking at the ultrasound images. Alicia puked on the way home from the appointment - thank God I had my latest knitting project with and was able to give her the bag to puke in.

At next week's appointment we will be meeting with someone from the spina bifida clinic at Children's Hospital.

Post Op Week 2 appointment

6-21-2011

We had our first post op appointment at the Maternal Fetal Care Center at Froedtert Hospital today. It is located on the 6th floor of Children's Hospital next to Labor and Delivery. Our appointment lasted about 2 hours- we had our weekly ultrasound, met with our nurse coordinator, and 2 other doctors that will be following our case and had our pregnancy glucose testing done. I did sign up for their Moms program which allows a medical student to come with you to all of your appointments and follows your case as an extra support person. (Both my husband and I are pro-learning and think this is a great opportunity for the medical student). They were also interested in scheduling our c-section at 37 weeks which would be around Sept. 7-10th if we are able to make it that long. We are 25 wks 3 days.

Rachel's ventricles continue to measure normal with no signs of hydrocephalus. She now weighs
1 lb 12 oz. We were able to get some nice images of her back this time also which shows the closure that was done. Her heartbeat remains in the 130's. My amniotic fluid levels were good with no signs of leakage, or any signs of separation of membranes or placenta.

My glucose testing just came back on the borderline of the high side - which means I need to have another test done to rule out the possibility of gestational diabetes. Geez - what's next?

Home Sweet Home

6-17-2011

We arrived back in Wisconsin late on Wednesday night. Our departing flight from Nashville was delayed slightly for a thunderstorm that was occurring - this was okay as it made our layover in Kansas City less. Both flights went well and I didn't have very much discomfort (I am sure the percocet I took helped with that). I gained a new respect for individuals who are wheelchair bound as many of the restaurants and shops in the airports are not equipped for wheelchair users and most everything is placed above the eye level making it impossible to look at things. I am grateful for the use of the wheelchair at the airports as I would not have been able to walk the distances needed to get from place to place. For the other moms who may have the surgery - I was very nervous about flying home and scared about the take off and landing of the airplane - the flights were much easier than anticipated - I did use one hand the entire time to cradle baby Rachel and my surgical site. The bumps from take off and landing were much better than the bumps felt in the car driving to and from the airport. I think the anticipation that I was going home to my girls also helped and that you do not have that pre-surgery anxiety with you. My husband guarded me like I was a piece glass ready to shadder (which in retrospect I kind of am). When we arrived in Milwaukee my brother-in-law Dave and my father-in-law Bill also were very protective and made our homecoming very pleasant. I can not express how great it was to see and touch my girls after being away nearly 3 weeks.

Our ultrasound on Wednesday before heading home went well. Baby Rachel's ventricles were still measuring normal (less than 9mm) and her Chiari malformation remained to be very slight. She was moving all extremities- we could see her moving her hips but it was hard to tell if there was movement at the knees as she had her legs crossed. She had urine in her bladder. My amniotic fluid was measured to be a volume of 12- there was no evidence of separation of membranes or of the placenta. I had my staples removed- that was not fun. My lower staples were slightly irritated but my incision was well approximated. I recommended to Mary that the mom needs a stress ball to squeeze while having the staples removed- it definitely stings but your incision does feel much better when they are out. I have steri strips in place and they do not seem to be irritating my "sensitive redheaded skin". My rash from the surgical prep and drape is nearly gone also. I am still having occasional painful bladder spasms but am hopeful they will resolve over time.

Our insurance company UMR is still continuing to deny coverage for the surgery- stating there is not enough evidence that the surgery helps with the disability of the lower extremities. We are going to appeal their decision. My husband has been doing research of other insurance companies that have changed their policies and approved the surgery as this is considered to be the new standard of care for spina bifida. We will keep you updated on the process and results with UMR as this may also occur to other families.