Gillian gets a cast

Yesterday we had our first visit to the UCSF spina bifida clinic. Having made the rounds to way to many specialists for Jordan, we were looking forward to being able to see of the of SB team in one visit. Our expectations were far exceeded. UCSF delivers again. On to what we learned at the clinick..

PT - keep streching her feet and lower legs. Good movement, doing well.
Ortho - Cast applied to address her club foot, measured for ortho shoes that we'll get once the cast is off.
Neurosurgery - Wound is healing well, don't worry about the blister.
Urology - Keep cathing for the next year and repeat the VCUG to see if we can discontinue the cathing.
Social Work - Will arrange for PT and other therapy as needed plus respite care.

All in all, Gillie is doing very well. Did I mention she weights 10 pounds?

In two weeks, we have a return visit for another head ultrasound and to remove the cast. More news and pictures later...

Todd

We ain't no daily publication

Our home office has been receving a LARGE number of VOCAL complaints that there has been no update in the past week. Well, here are some more pictures. In an effort to provide more timely information and pictures, we will gladly allow you, our readers, to come over and pull 24 hour shifts dealing with poopie diapers, feedings, and all other manner of family duties and responsibilities.

Suffice to say, we dont' get any sleep around here. Gillian is doing well and therefore, we are not.

Asleep at the keyboard,


Todd

Friday Edition

Gillie has moved to another location in the ICN. She is in bed 1, North Wing. We are also going to be moving today to the Koret Family House. This is the same place where two other families with SB kids are staying. We will also be a bit closer to the hospital.

Things are still on track for us to leave next week. All three of us are doing well and we are looking forward to coming home.

Hopefully, I will find a way to post more pictures tonight...


Todd

Thursday News

The PT consult today said that Gillie's foot doesn't require surgery and that she will have an answer as to wether Gillie will be splinted or casted by tomorrow. Things look to be on track for us to head out of UCSF by Wednesday of next week. The hospital is already making outpatient follow-up appointments for us on Monday... not sure how realistic this schedule is, but we will gladly work with it.

Christy and I are doing better. We've managed to get some rest and all things considered, we're not doing bad at all.

More later...


Todd

More pictures and info from UCSF

Gillie Update --- Just talked with Dr. Gupta

First, let me HIGHLY recommend that you never attempt to park at the UCSF garage on a rainy day. It took just short of one hour to find (I really mean fight for a spot) a parking spot.

Dr. Gupta just spend some time talking with us about Gillie's progress. He is pleased with how her wound is healing and very pleased that she is not showing and signs of hydrocephalus. We also got the info that ortho and PT CAN begin their consults so that we can still aim to head home next week. Gillie still needs to avoid being on her back so that we minimize the changes to injure wound. All in all, we are all doing better since talking with Dr. Gupta.



Here are some more pictures.
More later...

Older Update that didn't get posted

This post didn't make it until today.. we've been busy.

Todd


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Gilliean Update

First, thank all of you for your continual prayers and thoughts for our family over the past few months. All three of us are doing very well. Christy is going to get out of bed this morning, Gilliean did very well during her surgery yesterday, and I am doing my best to enjoy being Gilliean's daddy.

So here is the recap of the past two days. We arrived at UCSF on Tuesday morning at 10:00 to prep for the 1:00 c-section. UCSF had thee emergency procedures that needed to happen before Christy's c-section and because of this, the UCSF team decided to wait until Wednesday morning. So promptly at 8:30 Christy way prepped for surgery and was walking down the hall when they turned her back because of another emergency. Do you see a pattern here? A few minutes later, the OR was ready for Christy. We provided the traditional elbow-elbow-wrist-wrist Ms. America wave to Christy as she headed into the OR. There were some challenges in getting the epidural & spinal placed and while I waited outside, it seemed to take forever. There was some discussion that the surgery had started without me, but that was not the case.

I managed to make it through the surgery without passing out. I was able to record some of the audio from the delivery including Gilliean's first cries. I don't remember the names of all of the Doctors in the OR but I must say they were very friendly and accommodating throughout the surgery. One of the docs took tons of pictures for us while we talked at length with the others about many things including good local eateries, the lack of power tools in the OR, and that we didn't want any junior mints to be spilled into Christy. I was given the opportunity to cut the cord. However, I know my limits and kindly told the OR team that unless they wanted to deal with a passed out father, I would pass on their offer. I then proceeded to walk back around the OR and sit down on my designated daddy stool. The anesthesiologist was Dr. Ben Paul. He was very pleased that I was wearing teva sandals in the OR.

We gave Gilliean a chance to rest and about an hour later Christy's parents and I paid her a visit in the ICN (intensive care newborn). Several people have asked about her 'painted nails'. I don't know why they appear to be painted red, but we will find out.

Later that day, we had the chance to walk Gillie down from the ICN to the OR for her surgery. We were told the procedure would take around two hours. The surgery started at around 4:00 and by 5:50 the Neurosurgeon was up in Christy's room giving us an update on how well the surgery went. From his point of view, things went as planned and there we no complications. We then went back to the patient elevator to wait for Gillie to come back to the ICN. We took a couple of pictures as she was moved back to into the ICN.

We were lucky enough to have David and Alyssa Forester (hope I spelled her name right...) drop by to visit. David is in dental school here in SF and his wife is in nursing school as well. We hadn't seen David in years and I don't think we had ever met his wife. BTW, she is running her first marathon this weekend in San Diego so keep her in your prayers as well. I took them into the ICN to meet Gilliean. Gillie was very still and peaceful when we saw her. She was laying on her belly and we heard a few little snores. How beautiful.

We haven't gone to see Gilliean this morning. Christy is going to get out of bed and we will see how things progress. I would venture to guess that there will be a morning visit to the ICN.

Thanks again for all of your prayers and support,

Todd

Ok, we're not really homeless

I think that our last post created some confusion. We have NOT been forced into the mean streets of SF. We are still staying in a parent/child room @ UCSF. We did make a decision to find a different place to stay tonight. More to follow..


Back to Gilli... She is doing very well. Our goal today (outside of housing) is to pin the UCSF folks down and get more info about a release date. We will see how much info we can pump out of these people.

Todd

Monday is a good day

So we just got the prelim read of the head CT and Gilli's ventricles are still in the 13-14cm range. From our POV, this is yet another miracle since the last prenatal head CT estimaed the size of the ventricles was 16-17cm. So, how about that!

I've been searching for an economical way to post more picture of Gilli but this quest has proven difficult. I hope to make more headway and show you more pictures of our daughter.

We have been starting to be a bit more firm with the UCSF folks so that we can better understand the requirments and milestones we need to achieve so that we can all go home.

Over the next few days, can you please pray for the following:

1. That we would get into the familiy house near the hospital.
2. That we would learn when we are all going home.
3. That Gilli's back would continue to heal
4. That the other spina-bifida kids would also be healed.

We've made some new friends here @ UCSF. Faith and Kyrsten are two other girls who have SB. All of the girls have had corrective surgery and are doing fairly well. Please pray for Faith that she would be able to go home soon. Also pray for Kyrsten that she would grow and develop and also be able to go home soon as well. Kyrsten had fetal surgery and was delivered at 31 weeks.

Thanks again for all of your thoughts and prayers.


Todd & Christy

Sunday Edition

Christy was discharged today and we don't have final lodging arrangements made yet. We will be crashing out in a wainting room @ UCSF tonight. Homeless in San Francisco.

Back to Gilli..

All in all, she is doing well. She is eating and gaining weight. Her head circumfrence is normal so far. We have an untrasound for her head tomorrow to check the size of her ventricles. Please pray that the test shows that her venticles are not growing. This would be HUGE for all of us if we can avoid a shunt. Well.. the UCSF people are closing out the free computer access today.. more later.


Todd

Quick Update

So the fine folks @ UCSF will let use their PC to post un update, but they won't let us use our machine to send the pictures we have taken... so..

In summary, all is going well and I will hopefully send more pictures soon.


Thanks for the prayers, phone calls and all of you support.

Todd, Chrsity, Jordan and Gillian.

MG - no really..

It is a long story but we didn't get to meet Gillian until this morning. UCSF had several emergencies they wanted to wait until today to perform the C-section. Christy is doing very well. More words later. Keep the prayers coming. Gilli is having surgery somtime today between now and 4:00.

Gillian's stats: 19 3/4 long, 7 and 1/2 pounds. Full head of hair.. very soft skin.


Perfect.



Todd