We are home!

Finally, after 34 days in San Franscico we are back in Phoenix. We will let you know when you can see Emma. Her appointment with her pediatrician is this Monday.

I have my follow-up appointment with my neurologist on the 8th. I continue to have significant problems with fatigue, sleeping 10 to 12 hours every day and on ocassion I have slept 16 hours.

About Emma's Shunt

This is part of the shunt that controls the flow of CSF from the
ventricles into her abdominal area. This is placed under her scalp on the right side of her head.

RECOVERY

Miss Emma is in style and well on her way to recovery!

Surgery tomorrow morning

Most of you are aware that Emma is scheduled for surgery this Thursday or Friday at 7:30.

Each day seems to be full of various adventures especially traveling back and forth to the hospital. Today, I made at least 4 trips and had more difficulties. If my scooter didn't stop dead in the middle of the road on the train tracks with the MUNI train coming my direction, I was dropping my cane on the tracks, or my purse in the street, and on one occasion I was not able to get OFF the MUNI train (while I desperately tried to get the chair to go while everyone watched, waited, and asked if my battery died) - No must have been just me... par for today. For some reason I could not get my GO GO scooter to go until after I had turned it off and back on 3 times! After these frustrating and challenging experiences - I went back to the Family House and took a nice long nap.

Amber is exhausted too. We are both back at the Family House and grateful to have a room, bed, and shower. Even though we share with other families, we are finding that this preferred over the hospital chair-bed and no shower.

Please continue to pray for Emma.

All of our days in the past have brought us to today

Emma is 4 days old and recovering from her back surgery. So far, Emma has proven to be very proficient when it comes to nursing.

Amber is doing well. She was released from the hospital but is allowed to stay so she can nurse Emma every 2 - 3 hours.

Emma is being cared for in the Intensive Care Unit. She is going to be scheduled for another surgery this week. She will receive a shunt to reduce the fluid that is building up in her spine and on her brain. She no longer has bowel and bladder control. We hope and pray that when the swelling has gone, she will regain control.

At times my emotions are overwhelming and experiences are beyond any I have ever had. She is so beautiful and tiny. I love little Emma Lou Rose!

One day at a time - 3 weeks in SF and counting

We have been in San Francisco 22 days. I am beginning to feel like this is a second home.

Emma was in surgery this morning for 3 hours. The surgeon said that everything went well. The spinal opening is now closed. We hope we will be able to hold her in two to three days. The surgeon told us that her ventricles in her brain are enlarged and we have been told that we need to watch and wait to determine if she will need a shunt. Tentatively she is scheduled to have surgery sometime next week if she needs the shunt.


Amber (Lexi) is recovering from the C-section and should be able to leave UCSF hospital in a day or two. I suspect we will be in San Francisco for another 2 weeks.

Baby Emma Is Here

Emma is here.

She weighs 7 lbs. 9 ounces.

Amber (Lexi) is doing well.

Baby Emma

Plans have changed. We spent most of our day at UCSF. Emma was not ready to be taken by C-section. The new plan is to deliver Emma this Thursday at 10:00.

The past month has been One Day at a time. We have been able to stay busy most days. This is a picture taken in China Town. I am thankful for the time I have been able to spend with Lexi. I am exhausted. Tomorrow I pray we will have little Emma and soon we will be headed home.

Last weekend we had beautiful sunny days in San Francisco.

We were not able to access the internet for the last two days. We are not sure why but today we have access. There is not much to report. We are still waiting for Emma. I finished Emma’s baby blanket but still working on Payton’s blanket.

Last week, we had several appointments and made two trips to Labor and Delivery, which have been helpful. I know where we need to go, which is the 15th floor of the hospital. Amber’s contractions are stronger every day. She looks ready to give birth. Monday is the birth day as long as Emma’s lungs are developed. Emma should be delivered via c-section sometime in the afternoon.

The Family House is completely full with approximately 22 families. We do not have cable access to TV in our room but we do have a TV that plays videos so we have been watching a lot of videos. This afternoon we are watching the Wizard of OZ and the Titanic. Nick and his parents are flying to SF (here) tomorrow - so we all will be able to watch the Superbowl game with them at the hotel!

SF - The Good, the Bad and Ugly

The Good News is that we are here is SF. The Family House and UCSF Fetal Treatment Center are amazing. The Family House is somewhat like the Ronald McDonald House. We are staying in a home that has 4 floors, three of the floors house up to 8 families who have a child receiving treatment at the children's hospital. Each floor has a community kitchen, shared living room and shared bathrooms. One family told us how they lived at the hospital and out of their car for 3 weeks because both homes were full. We are lucky to be here. Baby Emma is our child that entitles us to stay in this home. Often we are asked if we have a sick child in the hospital. Many of the children are being treated for cancer. Some are like us who are receiving services due to their baby having special needs. The UCSF Fetal Treatment Center treats all kinds of birth defects. We have heard wonderful stories about the staff and children's hospital. If you are interested they have a web page.

http://fetus.ucsfmedicalcenter.org/our_team/fetal_firsts.asp

While we wait for Emma, Lexi (Amber) and I are trying to keep busy and that means going places on public transportation. So far we have acquired a new vocabulary and learned where NOT to go. We have ridden the city bus, the MUNI (train like bus), the BART (underground subway), and CalTrain. Nick flew in for the weekend, which was a great emotional boost since we both miss our family and friends. Saturday and yesterday, we rode the BART to the SF airport with Nick.

The BAD - There are five major public transportation stations in downtown SF and a major station at the airport - none of these stations have public bathrooms. Among all five underground stations in downtown - only 1 has a working elevator! We have been separated twice and we have been stuck underground - no way out (except to get back on the MUNI or BART)! And no restroom. Needless to say - I have had some very stressful and awkward experiences.

The UGLY - yesterday we were separated after missing a stop on the BART when headed back into town from the airport, about a 20 minute ride turned into an hour trip. We missed the only stop that had a working elevator, which is the last stop before going under the BAY. We ended up in Oakland.

After arriving in Oakland, we decided to get off the BART and return to SF.

Oh - another BAD about the public transportation - the doors open and close extremely quick - As you can Imagine - I in my scooter with cane in hand and Lexi being very pregnant - Only one of us made it off the BART - me! The doors shut in front of Lexi and away went the BART with Lexi in it and me sitting on the platform.

I was underground in downtown Oakland all by myself.

Everyone who got off the BART with me - disappeared in seconds. In order to catch the BART back to SF, I had to go down another level... I was all alone as I looked everywhere for an elevator and prayed that Lexi and Emma would be safe and that she would be able to meet up with me on the next BART going back into SF.

A GOOD thing is that there are WHITE phones at BART stations so I was able to get directions to the nearest elevator. Down a level, I continued to pray that I would be able to join Lexi. As I waited for the next BART headed into SF, I noticed several people had joined me and I was no longer all alone. The BART arrived. I quickly scanned the platform for Lexi when I heard her shout, "MOM!"

What a relief - we were together and getting back on the BART headed to SF.