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.

Discharged from Vanderbilt

6-13-2011

I was discharged this morning from Vanderbilt. I have a follow up appointment on Wednesday morning to have an in depth ultrasound and staples removed. If all goes well I will be cleared to head home. After I return home, I will need to begin to be followed by a Maternal Fetal Medicine doctor at Froedtert as St.Mary's is not equipped to deal with as high risk of a pregnancy as I current have. From what I understand I will also be one of Froedtert's first fetal surgery moms.

For the other moms that may have the surgery- the first 3 days are definitely the hardest and then it gets much better. Listen to the doctors and your nurses. Take the sleeping pill when offered during the first nights- your brain will be so active with weird thought after weird thought that it is hard to fall asleep (I talked with the anesthesiologist regarding the overly active thought process and he reassured me this is normal after general anesthesia). Take all of your breathing treatments and regularly use your incentive spirometer- keep a pillow within reach to hold against your abdomen when you need to cough (changing positions will encourage your body to cough out the junk- cough it out- keep tissue near by to spit out the junk you cough up- I imitated my grandma and kept extra tissue in the front pocket of my hospital gown). Do not hesitate to call your nurse for anything - keep up with your pain medication and anti-nausea meds- after the PCA is dc'd you need to ask for your pain medication. If you start to have heartburn or indigestion- tell your nurse- they can get an order for pepcid for you (I needed this and it made a huge difference with the first dose). I had bleeding and spotting for 3 days after the surgery. They have the "lovely stretchy panties" and pads there that you can use. Take all of the stool softners, laxatives and suppositories they offer (I know it is totally embarrassing for you but you do not want to end up with a bowel obstruction). The first time one of my nurse's strongly encouraged me to get and walk- I thought she was crazy and that I wasn't ready but it was one of the best things I did and really helped me to get my "sea legs" back under me. The care the entire staff gives you is excellent - they all genuinely care about how you and your baby are doing. Bring your own pillow from home. The chair in your room for the dads is very uncomfortable with no neck support. My husband had a lot of nervous energy the entire time- encourage your guy to bring with some type of entertainment - send him on missions to get you things. One of the things my husband enjoyed doing was walking around the grounds of the hospital and taking pictures for our girls who were unable to come with and he liked trying to get video of the helicopters taking on and off. If you bring a laptop- they have a number that you can call to get internet access (you most likely will not need to call as both of our laptops picked up the network right away) The internet is fast enough that you could watch Netflix without interruptions. There was not much on t.v. unless you enjoy watching 3-4 hours of shows about people that hoard or the weird food addictions or Nascar. Speaking of shows - Baby's First Day on TLC is/was filmed at Vanderbilt.

Ultrasound Post Op Day 4

6-11-2011

Our ultrasound went well today. Rachel was moving all of her extremities and had the hiccups. She had fluid in her bladder and was doing her "practice breathing exercises". My amniotic fluid volume was good and had increased from Wednesday's ultrasound. There were no signs of leaking fluids, separation of membranes or separation of the placenta.

We are going to try a prescription cream on my rash from the OR prep and drape. It is starting to get itchy in areas. (Mom- if you are reading this did you have reactions from the preps used on you during your different surgeries?)

My staples are dry and intact. I have one distal staple that is gets irritated at times with movement. I think the staples come out sometime next week.

Overall, today was a much better day. I am happy with my recovery process for today and am hopeful for tomorrow. We did talk with Dr. Carrol regarding restrictions for when I go home. I will be on bedrest and able to get up for about 15 minutes each hour. No lifting more than 5 lbs-no lifting grocery bags, no picking up stuff from the floor- very limited smart activities. We want to get past 28 weeks of pregnancy if possible and hopefully get to to 34-37 weeks. Steve and I adore Dr. Carrol and wish we could take her with us. She is very good at explaining what is going on and what to expect.

Surgery Recovery part 2

6-11-2011

Today's recovery is starting out better than yesterday. The lower dose of percocet seems to be working out better for me. I was able to take a longer walk with my nurse past the nursery. It was nice to see the babies in there and remind myself that Rachel will be here by the end of summer. I forgot how small babies were since my girls are so big now. I took a shower today and am going to take another walk with Steve soon. The labor and delivery nurses here have all commented that they are having a baby boom right now with all the deliveries that have been occurring this week. It is nice that the nurse's work 12 hour shifts and you have the same one during that time. I do have to say all of the nurses I have had have been giving excellent nursing care. I like that we set daily goals and work towards those goals.

My room is located on the 4th floor near the helicopter pads. There are 3 helicopter pads (maybe 4) and they are constantly bringing patients in- day and night. Last night was very busy- Vanderbilt is a trauma center. They have 2 music festivals going on this weekend which means an increase in patients in the ER and other areas.

We will be doing an ultrasound of Rachel later this afternoon. I will try to update those results. She has been moving around and keeping her heartrate in the upper 130's. We are in the time period when it is expected to have low amnioic fluid so we will see. On her ultrasound on Tuesday you could see her swallowing fluid. We are also in the time period that the baby goes through their own spinal shock from being operated on and may have problems with their bladders emptying. We are 24 weeks today and praying that all continues to go well.

Surgery recovery

6-11-2011

The surgery went well on Tuesday. I do not remember anything after receiving an epidural and breathing in the gas in the mask. We were told everything was straight forward and nothing unexpected occurred. Baby Rachel had turned positions from the time we left my room and got into the OR. When the incision into my uterus was made, Rachel reached her hand out and waved at everyone in the room- they said her hand was a nice pink color showing good circulation. It only took about 15 minutes to close up her spine. By later that night I could feel her kicking again and she had turned positions again.

I will not try to sugar coat anything- the recovery period is really rough. I have an incision with staples from my belly button down to about an inch above my pubic bone. You are given the spinal epidural and general anesthesia- it is hard to take the deep breathes you need to reopen your lungs. I am receiving breathing treatments and working with my incentive spirometer- coughing definitely hurts but you need to cough the junk out of your lungs. Another mom and I had our surgery on the same day but the formula for our general anesthesia was different from what was used previously- while we did not end up with low blood pressure issues- we have increased nausea and difficulties getting the anesthesia out of our systems. We are a few days behind in our recovery than what is normally expected.It is difficult to find comfortable positions in bed that do not pull too much on your incision. It is hard getting in and out of bed. They dc'd the catheter after about 24 hours- which is good because mine was causing a lot of painful bladder spasms. I am still having painful bladder spasms but they are slowing improving. I was able to shower and take 2 walks yesterday. I have been having trouble keeping my eyes open long enough to eat, drink and use my I.S. They decreased my amount of percocet last night due to my inability to stay awake. My head feels like I am constantly drunk- a feeling I despise greatly. IV demerol will never be my friend- I received one dose of that and couldn't lift my head off my pillow- made me very nauseated and uncomfortable. I have rashes everywhere the surgical prep was used and a blister on my back from the band-aid that covered my epidural site when it was removed. After the surgery you have some bleeding and spotting for a few days. Each day my recovery is a roller coaster ride. It is rough and makes you question if you did the right thing. I know it was the right thing to do for Rachel but holy s**t the recovery is hard.

Pre-op testing

6-6-2011

Today I had my pre-op testing appointment. I had vitals, medical history, short physical exam and lab work done. My labs done were BMP, CBC w/diff, platelets, PT/INR and type and cross. The normal labs everyone has done for any surgery.

The food court in the Children's Hospital was really nice and unexpected - I love the fact that they have a Ben N Jerry's ice cream shop in it. (Of course, now that I saw that I have a craving for an ice cream cone)

Surgery is scheduled for 10:30 tomorrow morning. I most likely will not be updating my blog until 1-2 days after surgery. I know I will be on mag. sulfate after the surgery and I had that when I gave birth to Breanne and that stuff does make you feel crummy.

Thank you again everyone for your prayers and support. I miss my girls, my dogs, my house, my family and friends and look forward to coming home and recovering for the summer. While Nashville has been very nice and welcoming- there still is no place like home.

Enjoying Nashville

6-2-2011

As we are counting down for the surgery on Tuesday, Steve and I are continuing to enjoy being in Nashville. We discovered more parts of Centennial Park today - I love the airplane as it has part of my name written on it more than once (although I am sure ANG stands for something else but for now I will just pretend). The weather is staying consistent in the mid 90's.

We were able to get into the Hospital Hospitality House program today for our hotel stay. We are staying in the same hotel but needed to move to another room. We are grateful to be in this program and encourage others coming to Vanderbilt to work with their social worker to help get you into this program. This program also inspires me for future volunteer work when I am physically able to later this year. This was also a program that Renee had found for us before we had left Milwaukee but you can not apply for it until you have the referral from Vanderbilt.

It was nice that one of the doctors at Vanderbilt had connections with UWM and was familiar with the Milwaukee area. It was also very helpful the conversation I had with the neurosurgeon in our Chiari clinic regarding spina bifida. Plus the neurosurgeon here at Vanderbilt and our Milwaukee Chiari clinic one had done their residency together at John Hopkins. Kind of a small world at times.

Also to pass the time I started a new knitting project. I am using Berroco Glade yarn in lilac to make the drop stitch scarf pattern from the Stitch & B**ch Nation book. The pattern is super easy and works up fast. It will be a nice light weight scarf for the warmer months. (For those who don't already know I am an avid knitter and a yarn junkie) I had checked out several pattern books from our local library before we had left. I do not own any of the Stitch & B**ch books but I can tell you I will be putting them on my list for Santa this year.

Evaluation at Vanderbilt

6-1-2011

Our evaluation began with a detailed ultrasound. There were no changes to report from Thursday's ultrasound. Rachel's heartrate was 142 and she now weighs 1 lb.
We met with 3 different doctors, the financial advisor, social worker, a genetic counselor and fetal surgery coordinator. All of them were very good at explaining the surgery and the aspects that pertained to their jobs. I think it was very helpful that we had researched the surgery and the different aspects of spina bifida before attending this evaluation- I think for the parents who did not- it would be very over whelming. They are very strict regarding their criteria for surgery- especially with the mom's medical history and the mom's BMI (thank god for all of the lettuce I ate for the last 3 weeks as I was already overweight when I began this pregnancy. At this point (22 1/2 wks) I have gained 8 lbs but it looks and feels like a whole lot more than that.

We were approved for the surgery and will be the second case scheduled for Tuesday the 7th. One of the hard things for Steve and I to think about is the level of intervention and possible DNR status of Rachel should something go wrong during surgery or the first few weeks following surgery. I will have preop labs drawn on Monday. The surgery is done in the labor and delivery wing at the adult's hospital. The operative team consists of several different doctors, along with an ultrasound tech that continually monitors the baby and the usual anesthesia and nursing team that accompanies surgeries. It is expected that I would need to hospitalized for 5 days following the surgery. The entire surgery takes 3-4 hours.

On a crappy note our insurance company UMR has denied coverage for the surgery- stating that it is because we have no out of network benefits but yet no one in our network is qualified to perform this type of surgery. The estimated cost of the surgery is $68,000. They have a financial advisor at Vanderbilt that is going to continue to try to negotiate with UMR. It is sad that in some cases Medicaid (title 19) has covered this surgery but yet UMR whom I pay a lot of money for will not. Makes you wonder . . . .

Getting ready for appointment

6-1-2011

We have our evaluation starting this morning at Vanderbilt. I received a call yesterday from Vanderbilt that we may qualify for a study they currently have going on. I do not know what the study is as the MOMS study had already been finished and published. I will update everyone regarding the study and the evaluation.

Here is the flow of appointments:
1030 ultrasound and consult with Dr. Carroll
1200 Dr. Tulipan Pediatric Neurosurgery
1300 Dr. Walker Neonatology
1400 Martha Dudek genetics counselor

Steve and I enjoyed yesterday walking around the Cheekwood Botanical Gardens and Mansion. The botanical gardens was relaxing- we both loved the Japanese Garden and the wooden train set ups. The mansion is 30,000 sq feet and contains an art museum. The art museum did have an exhibit from the Smithsonian in it- Steve's mom would have loved it as it was Faberge (I may have misspelled that one).

Still missing our girls and dogs (even the hamster's wheel at night). Thank you for every one's support!!