Sorry it has been so long since we have posted.

First of all we want to thank everyone again who helped out in any way for Gracie's fundraiser. We are grateful for everyones kindness and generosity.

Here is what's new around the Truhe house:

October:
Birthdays, Birthdays, and more Birthdays! October is the month for birthdays around here. Jackie celebrated her thirtysomethingth birthday on the first, followed by Adam's 4th birthday on the 2nd. Also, Uncle Mark (David's brother) on the 11th and Auntie Debbie (David's sister) on the 16th, plus our anniversary on the 17 and Uncle Mark & Auntie Corrinne's anniversary on the 21st. whew, I'm tired just listing it all :) LOL We celebrated all of the birthday's and anniversary's with the whole Truhe Gang at our favorite Brazilian Steak House in San Francisco with ! It was a blast!

Auntie Corrine & Uncle Mark with Adam, Coco, and Miranda

Grandpa & Grandma Truhe

Uncle Mark with Coco and Paolo

Auntie Corrine & Adam

Auntie Corrine & Gracie


Auntie Debbie with Coco, Adam and Paolo

The girls love are loving school this year. They were on Fall break for the first two weeks of the month. Miranda, Colette & Adam spent a few days with Jackie's mom which was nice and gave Jackie a little break; although Gracie keeps her hopping. Colette received a special award for trustworthiness at a school assembly. She didn't know she was going to get it, so she was so excited and we're all so proud of her.

Coco and her first grade teacher Mrs. Rotharuff

We celebrated Gracie's first Halloween by hanging out at the the girls school. Jackie's dad (Pops)was here and helped out in Coco's room while Jackie ran across the school to watch Miranda recite a Halloween poem. Then it was time for the school costume parade. The girls walked with their grade level and had a lot of fun. Adam walked with Miranda's class and Gracie hung out with Jackie and Pops. Jackie's best friend Chaundra and her baby Ciera (who is Gracie's best friend) came over. We dressed the babies up in matching penguin costumes and put them in a side by side double stroller and took them trick or treating... Well, ok we took them out to show them off to the neighbors :) meanwhile Dave and our friend Rob (Miranda's friends dad) took the big kids trick or treating. All the kids were dressed up very cute. Miranda was Dorthy, Coco was a punk rock pirate, Adam was a red Power Ranger. He was so cute, he would whisper to me " I'm not a real Power Ranger, it's just a costume"





November: So far there is not too much to report. Soccer is coming to an end, the girls are very sad. Miranda's Girl Scout Troop walked in the Brentwood Holiday Parade this year. Adam and Coco walked along dressed as presents. Grandma and Grandpa came to watch and we all had a ot of fun. We are looking forward to spending some time with family for Thanksgiving.

Grandma & Grandpa with Gracie at the Holiday Parade

Bella (friend) Adam & Coco

Hope to write more soon,
Love and Hugs to everyone,

The Truhe Family

David, Jackie, Miranda, Colette, Adam and Baby Grace

Gracie at 7 months old!

Gracie & Grandma Doris (Jackie's Mom)

at Miranda's birthday celebration

Adam swimming at Grandma & Grandpa Yeamans hous

Yes, that is a Mohawk

Cousin Michael, Miranda, Coco and Adam

swimming at Grandma & Grandpa Yeaman's house

Grandpa & Grandma Yeaman with Mirnada

Pops & Miranda going out on a Birthday Date

Miranda and friends Kylie & Sophia

at their first soccer game

Miranda's teacher Mrs. Halberg came to

Miranda's first Soccer Game

Miranda congratulates Coco on her first soccer game

Coco warming up for her first game

We made our first call to 911

I put Gracie to sleep around 10:00 pm on Monday night September 3. A few hours later at about 12:15 am Tuesday, I heard her making a strange sounding cry so I went to look in on her and even in the dark I could tell her lips, hands and feet were blue. I yelled to Davie to turn the oxygen up a notch. He thought she was getting her color back but I was still worried so I called the doctor, we have Kaiser so we have to talk to an advice nurse, I got through right away and she was very nice. She first told us to drive to the hospital then changed her mind saying that she thinks we live too far and for us to call 911. David still wasn't ready to call 911 so he called UCSF to see if one of the nurses we like was working and one was, he told her what was going on and she agreed we should call. (I was already on dialing)

Our next door neighbor Joni is a paramedic and was on duty that night, our neighborhood is not on her route but she called her fiancé and told him about the call and he came right over. He was able to keep everything calm and was able to talk to the firemen and paramedics when they arrived at our house. The firemen took her off of our o2 and put her on theirs and gave her “blow by” as well. She had her normal color back before arriving at the hospital. I was beginning to feel silly for calling 911. Gracie and I were taken to the nearest hospital (Sutter Delta). I had taken her temp at home and it read 101 but when they took it at the hospital they got 103. They tried to get a urine sample and start an IV but had no luck. They did take some blood to run a culture. After about 5 hours she was transferred to Kaiser (Walnut Creek) we were taken by ambulance again. We were stuck in that ER for several hours; they also tried to start an IV and get a urine sample but also had no luck. She was eventually admitted and by this time I was feeling a little stupid for calling 911. Gracie seemed fine, she was pink and her fever was gone. Gracie and I were both tired and a little grumpy. Gracie is only 8 months old (only 13 ½ pounds) They don’t have cribs in the ER and she would roll right off a gurney so I had to hold her the whole time we were waiting in the ER’s. Once she was admitted the nurse took her to a treatment room to start the IV and get the urine sample. Then some people from the lab came up and drew blood every hour for 3 hours to draw blood for cultures. The doctor was really nice and said that they were really concerned about Gracie’s fever. Her cardiologist wanted her treated for pneumonia. He was actually out of town but came in as saw her later when he got back into town; he did an echo and said that “heart wise” she was actually doing much better. Her pressures had dropped from 80% to 60%, still not great but finally going in the right direction. He feels really good about postponing her next cath for another 6 months! She was supposed to have one in November. He even said that he thinks she may end up not needing the Glenn procedure. She will still need something done with her tricuspid valve at some point. The cultures they ran take 72 hours so we were stuck in the hospital until they got the results. She was still getting antibiotics in her IV but on Thursday morning we noticed that her IV was infiltrated so they had to take it out and since it was so hard to start the iv in the first place the Doctor decided to leave it out and give her a 24 hour dose of the antibiotic by injection. It kind of stunk because it had to be given in the muscle and because it was such a large dose they had to split into two so she got one in each leg. Finally on Friday all the cultures had come back negative and her fever was gone, she did pick up a little cough while we were there but it didn’t seem too bad so we were discharged. YEAH!!!

We saw her pediatrician this morning and of course her cough got worse and she is now coughing up mucus. He called her Cardiologist and they decided to run some more blood cultures and gave her another major dose on antibiotics (injections in both legs) He thought about admitting her again but since she didn’t have a fever and her sats were 97% he would send her home but wants to see her again on Friday.

It looks like all of this excitement was all about a cold. I still don’t know if I really needed to call 911 but I would rather feel silly for calling when I don't really need to than for not calling when I should have.


Blessings,
Dave & Jackie

Come join us for an evening of fun
and the opportunity participate in this worthy cause...


Bunco for Baby Grace
Deer Ridge Golf & Country Club
Friday, September 21st
6pm – 9pm
Tickets are $25
100% of the proceeds benefit the Truhe Family

~ SPACE IS LIMITED ~

For more information, please contact:
Tracye Marshall at 925.595.0352


Our hearts were touched when we learned about Baby Grace and the Truhe family, and clearly felt we could help make a difference in their lives.

The condition Baby Grace lives with, Ebstein's anomaly, is a rare heart defect that is present at birth. It primarily involves the lower right chamber of your heart and the tricuspid valve — the valve between the upper right chamber and the right ventricle.

In Ebstein's anomaly, your tricuspid valve doesn't work properly, so blood leaks back through the valve and into the right atrium. As a result, your heart works less efficiently. Ebstein's anomaly may also lead to enlargement of the heart. In addition, about half the people with Ebstein's anomaly have a hole in their heart, and one in four has episodes of fast heartbeats.

There are many organizations fundraising for worthy causes, but I hope you will consider participating in this worthy event to help the Truhe family with their medical expenses. If you are not able to attend in person, we are also accepting gifts which will be used as raffle prizes the night of the event and monetary donations which will go directly to the Truhe family. If it is at all possible, please return your donation by Wednesday, September 12th. Thank you for your consideration. The Far East Bay Women’s Networking Group couldn't make this event a success without the generosity of donors like you.
Make checks payable to:
Baby Grace Fund and mail to: 715 Outrigger Circle, Brentwood, CA 94513.

Hope you can join us!

Gracie is 6 months old

Hello Everyone,

I know it has been a long time since we have posted. Gracie Ann has been doing really well at home. She took herself off the NG tube about 2 weeks after we came home. She would pull it out as just as fast as I could put it back in. She was vomiting after every feeding on the tube and it was causing us a lot of stress. She was actually slowly loosing weight. I decided, after the becoming extremely proficient at inserting an NG tube and Grace becoming an expert at removing it, that we would leave it out and see how it would go. To our thankful surprise she did really well. She also took all her medications by mouth without many problems.

Off the NG tube and feeding by bottle she began to gain some weight. However, her doctors were still not happy with how fast she was gaining and wanted to send her back to UCSF for a G-Tube (a feeding tube that goes directly into the tummy and requires surgery). I was not convinced that this is what she needed. I really believed that she just needed a little more time to “learn” how to take the bottle. She did well and after a week or so she had gained back the lost weight. I convinced the doctors to give her another week and it worked, she gained enough weight for them to post-pone the surgery another week. Then after that week they were satisfied that she didn’t need it.

She continues to take the bottle and at 6 months old she has almost doubled her birth weight. She is still small, but we are confidant that she will catch up. She sees a home health nurse once a week to check her weight and oxygen saturation level. She sees her cardiologist and her physical therapist once a month. She sees her pediatrician every 3 months and her pacemaker doctor every 6 months. She takes 8 different medications several times throughout the day and is still on continuous nasal oxygen. In spite of all of this she is a very happy baby. Developmentally she is like a 3 month old.

She had to go back to UCSF a few weeks ago for a cardiac catheterization to see if she was in good enough shape for her next surgery. A catheterization is usually an in and out procedure but they found that she no longer needed her shunt. They determined that it may actually have been causing her harm so they had to close it off. They were able to do this while she was in the Cath Lab so she didn’t need a separate surgery. Because of this she had to stay overnight. The information they got from this procedure also showed that she is not ready for her next surgery - the Glenn procedure. However, the doctors told us that she may end up not needing it at all. One of the big components – her blood oxygenation – is so good that they are postponing any surgery decision for at least several months. We were also told that her oxygen is not really helping all that much anymore, but they didn’t take her off of it.

We asked at UCSF if we could take her off of the oxygen – because it is a pain having the large liquid oxygen tank and keeping the other kids out of fifty foot of tubing - they told us it’s not hurting her and they would leave it up to her cardiologist to make the decision. Her cardiologist told us that if they didn’t take her off of it at the hospital while she was being monitored he didn’t want to take her off of now. We’ll ask again when she goes back for another catheter procedure in three to six months.

Our time at home has been great. We were so happy to have Gracie home for a quiet Easter. Dave’s parents brought dinner over and spent the day with us. Then our friends Matt and Chaundra and baby Ciera (Gracie’s best friend) joined us for dessert. In May we celebrated Miranda’s First Holy Communion which was made even more special by having Gracie’s baptism completed during the service (she had an emergency baptism at birth). We took our first major outing on the 4th of July when we went to the Palo Alto Chili Cook-off to support our friends who took first prize in the vegetarian division :) Gracie did so well that we are now thinking of venturing out again. We are planning a trip to Chico to visit Uncle Mark & Auntie Corrine in August so stay tuned to see how it goes.

Dave and I want to thank the Brentwood Mom’s Club and the Neighborhood MOPS groups for providing us meals for weeks after we arrived home. We also want to thank our family and friends who helped take care of our kids while we were at the hospital, and to the Ronald McDonald house for giving us a place to stay so we could be with Gracie. And to everyone who sent us prayers, kind wishes and gifts, we love and appreciate each and every one of you.

Love and Blessings,
Jackie & Dave

Here are some photos:

4-5-07 Gracie saying goodbye to Nurse Megan

Gracie and Big Sister Miranda taken her first day home

Gracie & Ciera on Easter

Gracie in her baptism Gown

Big Sister Miranda on her First Communion Day

THERE'S NO PLACE LIKE HOME

Gracie was finally discharged yesterday; just a few day's shy of 3 months.

It was very emotional leaving the hospital. We were very excited to come home, but UCSF has been a huge part of our lives for nearly 3 monts. Some of these people have become like family to us. I was surprised at how many gave us their home addresses and phone numbers to keep in touch. One nurse said she's available to babysit whenever we need her... and I don't think she was kidding.

We arrived home around 3:30 yesterday and were greeted by our very excited older kids and Jackie's very excited mom.

On the way home we stopped by the pharmacy (who had been warned of our coming in advance) and overwelmed the poor girl behind the counter. A couple hundred dollars, and nearly an hour later, we left with a large grocery bag of medications. I think that the pharmacist was extremely happy to find out that we were already comfortable working with all these medications.

Five minutes after unloading our SUV, into what had been a clean house, we quickly realized that we were not as comfortable as we had thought. The medical equipment we needed was delivered before we arrived, so we were not 'properly' trained. I took to the manuals provided looking for simple directions, praying for divine inspiration, and finding nine different languages that were all pretty much equally unusable to me.

There are only six buttons on her feeding pump so there are only so many permutations... and the manual did have some diagrams that eliminated most of them. So, after several dozen error messages it was working. Grace got to eat her first night home... albeit an hour late.

We got her medication chart up; her supplies organized; medications refrigerated, or not, as need be... and started out behind. By the time we got done with one thing it was already past time to start the next. Those nurses make it look so easy. After a couple of times through we got the swing of things. The oxygen tanks which looked to be the most difficult to operate turned out to be the easiest, and the hardest is giving Grace her injections.

In the hospital they check all the parents to make sure that they can handle all of the child's needs before sending them home. In Grace's case this meant that, in addition to all of her medications and the oxygen, Jackie and I had to learn how to put in a NG tube to her stomach through her nose. Jackie did great. Me, not so much... The good news is that it only has to be replaced every thirty days, unless Grace were to pull it out... which she did, less than an hour after getting home. Jackie got right to work on it and had it back in promptly. My inclination was to get a roll of duct tape involved.

Jackie's awesome friends from her MOPS (Mothers of PreSchoolers) group arrived shortly after with a very yummy dinner. Again, thanks go out to all of you who have helped make this difficult time so much easier. We're home, so feel free to stop by when you can (unless your sick, or thinking about maybe catching a cold - if so, then send a card, an email, or wave as you drive by the house). Just come by and see Grace, she'd love to meet you and say thanks.

David

Back from the Cath Lab...

Hello everyone. Sorry these posts are getting stretched out. We have entered the slow part of Grace's recovery. She is working on feeding and growing issues; which is, well, going slow.

Grace had another procedure yesterday. She had a heart catheterization to evaluate her pulmonary artery flow, to determine blood flow to her lungs, and to see if she still needed her shunt.

Unfortunately for Grace: she still needs her shunt, her pulmonary artery on the right side was restricted, and the blood flow to her lungs was less than they wanted. So, they did a balloon procedure to increase the flow to her right side – which worked.

They also checked Grace’s tricuspid valve and found no change. There is still a ‘moderate but not horrible’ amount of backflow.

So the sum of this catheterization is that, because of her pulmonary vascular resistance (the reduced flow because of size of her lungs and her heart function), Grace will need a ‘Glen’ heart operation in several months. This procedure is used to increase blood flow to the lungs. They take the Superior Vena Cava (the main upper vein) and direct it straight into the pulmonary artery – bypassing the heart.

She has to wait until the pressures in and around her heart are lowered to have this done. In order to reduce the pressure she is being given 100% oxygen and also being put on Viagra (this is actually its original intended use)!

Well, that’s about it for now. No word yet on when we’ll be going home. Keep your prayers coming…
Thank you everyone for all of your help.

Thursday 3-22-07

Grace was transferred to the step-down unit on Tuesday afternoon. It took a little while for us to get use to our new environment. Are new nurses are great but after being with the other ones for so long I think Grace and I are both experiencing a bit of separation anxiety. We are in a "bay" with two other patients and we are use to being in our own room so it has been hard getting use to it. The other two kids in there are much older, they both like to watch TV at the same time and they both have to turn up the volume to be able to hear there movie over the other one. I had the worst headache yesterday and Gracie has not been sleeping as well over there either. She will eventually be coming home to her three older siblings so I suppose she should get use to a loud environment with chaos. Another change we are getting use to is that they now want Dave and I to handle most of her care. I had to give her and injection in her leg last night, It didn't go so well and the nurse had to do it over :( I think i cried more than Gracie. She is almost completely off of the oxygen and tolerating her feeds well so if all goes well we should get to come home when she finishes her antibiotics. I have heard this could be April 6, 9, or 12 so we will just have to wait and see. Now it looks like we may skip going to Kaiser and stay here until we go home. I am learning it just depends on who you talk to, so we will just have to wait and see.

10 WEEKS OLD

Not much new information to report. Gracie has been doing great off of the ventilator. The doctors seem confidant that she won't go back on. The only thing keeping her in the hospital now are feeding issues and antibiotics which she receives through a IV (she needs to be on the antibiotics for a month to treat the staff infection, which she started on March 9). There has been some talk about transferring her to Kaiser but I was told this morning that the transfer definitely will not happen this week. This is fine with me, I would rather just keep her here until she can come home.

Her feeds are going really good. She was back up to her full feeds (19cc's per hour continuous) by Friday. Today they moved on to the next step in her feeding. They stopped the continuous feeds and went to boluses feeds which is to give her one ounce every 3 hours. I believe that her goal is to get 3 ounces every three hours.

The occupational therapist came around this morning to assess Gracie to see if she will be able to tolerate feeding from the bottle or breast. She thinks it looks good; so Gracie will be giving the bottle a try on Wednesday. She also taught me some exercises for Gracie to do in order to help stretch out her legs and one for her hands to help her thumbs loosen up. Her right hand looks good but the left one is a little tight. When she makes a fist her thumb wants to go inside and they want it to go outside. I'm told that it is common condition for preemies.

Dave and I are doing good. The kids are on Spring break. They will be spending part of the time at my mom's house, part of the time at Dave's sisters house and part of the time with us. They are really handling this situation very well, we are so proud of them. However, they are getting very anxious to have all of us home. We have weekly meetings with Gracie's "team" and last week the kids were with us. The doctor asked them if they had any questions and they replied "when can we take her home?" Of course the doctors couldn't give them an answer. (I feel it is a few weeks away which is better then months like we originally thought)

As always thank you for all of your prayers and keep them coming.
Much Love,
Jackie

PHOTOS!

9 WEEKS OLD

Hi All,

Gracie was extubated on Monday! We were warned that she may not tolerate it very well and that she may have to be re-intubated right away. She seemed to tolerate it fine and was even taken off of the Hiflow and put onto regular O2. I was able to hear her cry, although her voice is very, very soft I could hear it. I was also able to hold her again, I think I held her a total of 3 times yesterday :) When I arrived this morning Gracie was back on the Hiflow (hi pressure oxygen through a cannula) it's a tiny step back but at least she is not being intubated again. As a matter of fact, they have taken all of the ventilator equipment out of her room. Once she proves that she can be off of the ventilator for good the only things keeping us here would be feeding issues and her antibiotics, which are to treat the staff infection and they are through a iv and she needs to be on them for about 3 more weeks. When that is the case she will be moved to Kaiser Walnut Creek. I heard a rumor that this could happen by the end of this week!

I have some photos to post and the hospital's computer guy is looking for the cord so we can upload them from my camera. Hopefully later today.

Love and Hugs to all,
Jackie

TWO STEPS FORWARD, TWO STEPS BACK...

Well Gracie had a great weekend and by Sunday she was down to a pressure setting of 14 and a rate of 20 on her ventilator.

On Monday her blood gas results returned to the not so great; and on Tuesday her temperature was up to nearly 104. They determined that she has an infection, most likely from her ventilator and they are treating it as pnemonia. Surprisingly they did not make many changes to her ventilator settings, they left the pressure alone and came up on her rate to 30, then brought it back down once her fever broke. Wednesday she looked very swollen and was very sleepy all day. She just didn't look as good as she had been looking the last week or so.

Today we found out that she has a full-blown staph infection. They are using some pretty heavy anti-biotics to fight it. Their concern is that it not get to her heart or pacemaker. Our hope is that the medications she is on will get rid of it before the infection gets worse.

Her vent settings are back up to 40... and any hope that she would be entubated this next week are gone. They have added a couple of weeks to her timeline in order to fight this infection, and then start over with the weening of the ventilator.

Countdown

We had our weekly meeting with Dr. Adatia, he is in charge of the PCICU, and he told us that everything about Grace is going great right now. He also told us that they will be trying to take Grace off of the ventilator sooner rather than later...

Now, he is the one who told us last week to expect a rough couple of weeks!

... we looked at each other with mild shock, and he clarified. He wants to take her pressure setting from 16 down to 8 - one point per day - and after that reduce the breath per minute rate to ten (or so) over the next few days. So, the sooner he was talking about is actually about ten days away!

And then, after we relaxed, Dr. Adatia let us know that most babies do not just get off the ventilator easily after being on for as long as Grace has been. He said that we should expect it to be an off and on trial for some time to come... but, I think we'll let Grace have the final word on this.

She continues to look better everyday. The scars from her first surgery are almost all just pink lines now. They are getting smoother all the time... sometimes we go to lunch and when we get back it seems like she has progressed a day.

Jackie got to hold her for the second time yesterday afternoon! With big brother Adam sitting right beside them.

She has an IV line, a feeding tube, and a ventilator and that is all! Most of the tubing and wires and stacked up medications are gone now and she is moving more and more. She got to sleep on her tummy for a big chunk of yesterday.

On Monday her nurse said that they will bump her up to a crib... progress in accomodations.

We have more pictures and will post them soon. Thanks again to everyone out there with a prayer for Grace.

It all happened in a week...

The doctors had told us to expect a rough couple of weeks... she is amazing Grace... Her pacemaker wound is healing nice, the medications she was given dissolved the blood clots and helped set her heart beat back to normal! It all happened in a week...

In addition, she got to lay on her stomach for the first time and loved it.

They have found that lowering her beats per minute is making her a much happier baby.

The next big hurdle is the ventilator. She is down to 23 bpm and a pressure of 16. When she came out of surgery she was at nearly 100% support. They are lowering the support ever so slowly, the last two times they tried to lower she fought it. So now I suppose we have to trick her with the ultra slow changes and hope that she tolerates it...

More later... we keep praying for a long, long string of good days like this...

Grace has a permanent pacemaker.

Grace came out of surgery Friday afternoon. Everything about the pacemaker surgery went extremely well. We did not have access to the internet until we got back to the Ronald McDonald House early this morning.

We were given some pretty dire warnings about what could go wrong with the pacing surgery; so far, none of those warnings have surfaced. But, just as Grace has done before, she surprised us with a completely new, unrelated problem.

While putting the pacemaker in, the doctor noticed her right atrium was in 'flutter'. All of her monitoring could not pick it up. Basically, it means that Grace's right atrium was still beating in pace with the rest of her heart (so everything looked normal); but, in addition to the regular pulse it was beating a second time inbetween the regular beats. This is something that is easy to correct by shocking the heart to pump even faster and it will reset itself to the regular beat.

However, with Grace's condition and just coming out of surgery they were extra careful and performed an echocardiagram to make sure that everything was okay. It was during this that they found blood clots in both her right and left atrium.

So, here is the course of action for Grace:
- give her a few days to recover from the surgery
- get her on medication to resolve the blood clot issue (they started this slowly last night)
- shock her heart back to a normal pace

All in all, she looks great and is doing as well as can be expected. I've said it before - she truly is a fighter!

Hi Everyone,

Gracie Ann was just taken into the OR for her pacemaker surgery. We were told that she had her best night ever last night. When we saw her today she looked better than we have ever seen her. I have a really good feeling that she will have a good outcome from this. We will hear more in a few hours so we will try to post again later. It may be tonight before we have computer access again...

No surgery today

Gracie Ann's surgery was canceled for today. She got a mysterious rash last night (it's gone now) her Surgeon, Dr. Azaike said that he doesn't want to take her into the OR unless is as close to perfect as she can be. She is on the schedule for Friday, so we will have to wait and see...

February 20, 2007

Just wanted to give you a quick update about Gracie's pacemaker surgery...

I just spoke with Gracie's Nurse and she said that Dr. Azaike has Gracie on tomorrow's schedule for her pacemaker surgery. However she is still not sure if he will do it or not. He still thinks she has too much fluid so he wants to wait to see how she looks in the morning before he decided weather or not to cancel the surgery. The nurse (Megan) said she thinks it's about a 60-40 chance that she will NOT have the surgery tomorrow. The batteries on the temporary pacemaker were changed today and the wires were tested and they seem to be working fine so Megan said that there is no rush to do it this week.

Thanks for all of your prayers. Keep them coming!

Blessings,
Jackie

'Episodes'

Hello Again,

An update for those of you checking in...

Grace's condition remains about the same. For every two steps forward there is one and seven-eighths back. She will do fine for many hours and then something - her blood pressure, or fluid levels, or pulse, or temperature, or poops, or blood gases, or any number of other things - will slowly begin to climb, or drop, out of the acceptable range and the staff will have to do something to right it. But whatever it is that is used to stabilize that imbalance will then cause another to be off... and then the next, and the next, right on down the line until she settles down.

So in the last 24 hours she has had a transfusion of blood and an increase in support on her ventilator. Her stools were sent out for labs and everyone (except mom and dad) have to robe and mask up when they enter her room until the results come back negative. This slows response time down a bit as the nurse, understandably, doesn't want to wear a mask and robe all the time.

Good news - her swelling is receeding and her color is coming back which means she's fighting the jaundice.

We had a meeting with the medical team Friday. They outlined the major steps Grace needs to take in the coming weeks:

First, she needs to have a permanent pacemaker put in. It is about the size of - well, how do I explain this - put your thumb and index finger together and make an oval; now seperate your thumb and index finger as if you where holding a good sized marble... the whole space between your two fingers, thats about the size of it. They have to find a way to fit this in little tiny Grace. This will be a major surgery, as they will go in from the left side, collapse her left lung, insert three pacing wires to both ventricles and her right atrium, place the pacemaker beneath her ribcage, and hope that her skin is elastic enough to close up.

After she is out of surgery she will be in a lot of pain, and may have any number of complications. They have already told us to expect a major setback; as humans, both adult and infant, don't like having foreign objects in their bodies. However the risk of infection from the external pacemaker is growing greater and greater with everyday... so in must the permanent pacemaker go.

They are looking to do this towards the end of next week (Wednesday, Thursday, Friday)... so, if you find yourself with a spare momment or two, send a prayer out for Grace. We will have about 24 hour notice and will post the actual time when we find out. She must have a solid day without an 'episode' or the surgery will be postponed.

Second, she will have to get off of the ventilator. The longer she is on it the harder it is to get off. It's kind of a double edged sword - it's allowing her to breathe easier and the rest of her organs are doing well because of it - but, she has not learned to use her chest or stomach muscles herself - and that means her lungs are not developing as they should... so that will be a huge hurdle.

Lastly, overcoming whatever complications and/or infection may arise from these proceedures, and getting all of her IV and other lines out. They have told us that for about a week after the pacemaker is put in she will not be doing well... but, after that she should start recovering and progressing. If everything goes well and she gets the pacemaker in successfully and the ventilator out successfully - she can move freely and exercise those muscles. No more medication to relax her muscles. We will be able to hold her!

In the end, the doctors told us to expect Grace to be here for about another three months. It could be shorter if everything went perfectly, but we are planning on the three months.

Thank you all for your continued support,
David

Weekend Update

Hello Everyone,

Thank you all for your continued support and prayers. I apologize to those of you who want more frequent updates. Please keep calling, it helps keep us on track with this blog; and it's good to hear from you.

This was a busy weekend for me as Jackie caught some kind of bug, so she couldn't be around Grace, and I had the other three kids. Jackie stayed home and the rest of us were at the hospital and Ronald McDonald house trying to keep from getting whetever Jackie had.

So, an update on Grace...

It is frustrating, after stringing along a few good days and forward progress, to reach a plateau. Grace needs to get off of the ventilator so that she can exercise her chest muscles and stomach on her own. She gets down to barely any help from the ventilator and does just fine. But, the instant they try to stop, she stresses out; her blood pressure shoots up, her breathing gets irregular, and they have to put her right back up to higher settings. It was, and continues to be, a roller coaster...

Any time she gets agitated (for just about any reason: being moved in a way she doesn't like, suctioning her tubes, flushing her lines, or not being able to 'watch' Discovery Channel with dad) her CO2 output rises. When this happens they have to 'adjust' the ventilator modes and her amounts to find an equalibrium where she will stabilize. Then the game of slowly reducing her begins again.

She got a new arterial line on Friday. This time in her left foot. It took several tries... so in addition to the large line above her ankle, there are now several bandages around her foot as well. Because of the new line she is responding much better to her medications. The old one was "falling apart" (not really, but one nurse said that it wasn't very useful anymore).

The new central line allowed her to have the IV's removed from her left hand. Which is now black and blue with bruises, scabs from the little pinholes and peeling from her swelling and decrease in fluids. However, now she has the ability to move her little hand and takes great pride in doing so. I like to believe that every time she is raising her tiny fist she is saying "I Rule" ala Kevin Spacey in American Beauty. The kids just think she is looking for a 'high five'.

Grace is now off of all of her continuous feed medications except the blood thinner Heparin. Everything else is just given to her as needed. Mostly she wakes up and is visibly upset with what is going on and the nurses have to sedate her with Morphine.

Her jaundice is much better. They have taken her off of the gallstone medication which was increasing her jaundice.

The people from genetics were in today running tests. I am still trying to find out what the tests where for. I do know that we won't get any results for several weeks.

She is taking 17cc's of food per hour. Her goal is 19cc's. But, just like everything else, she gets so incredibly close and then decides to test all of our patience.

So, all in all, she is doing her part and we're doing ours. The next big hurdle is getting her off of the ventilator. Keep sending your prayers to Grace...

Thank you all again,

David

more of the same

Gracie is doing about the same. She is on antibiotics for her infection and is still having trouble keeping calcium and electrolytes in her system. She is loosing some of her extra fluid which is good but needs to loose more before they can put in her pacemaker.

I have a sore throat so I can't go see her but Dave and the girls are with her this weekend. I hope to be better by Monday so I can go be with her next week.

3 steps forward 2 steps back

from Jackie

Gracie had a rough weekend. We got here on Friday afternoon and found that her ventilator settings had gone back up to 40, they had been down to 15 earlier in the day. They told us that her blood gas tests have been coming back bad so they had to go up on her ventilation. They also had to stop her feeds which had been up to 19cc per hour. They also had to put her back on the Lasix because of fluid build up. It was really disappointing because just a few hours earlier everything was going so well and in the time it took us to drive here everything had changed. A few hours later she seemed to be on the right track again so we felt good about going back to the Ronald McDonald house for the night.

Saturday Morning I came in to find out that they had thrown out all of my breast milk that I had given to the nurse the day before (everything I had stored up from Wed, Thurs, and Friday) She said that even though I had put my name on it with a Sharpie and had it in the correct box in the freezer, they had to toss it because it didn't have a hospital label. I was devastated (any of you who have ever pumped know why) Then when I finally stopped crying about my spilled milk they told me that Gracie was not having a very good day again and that they suspect she has an infection and Sunday was more of the same.

Today she looks better and is back on her feeds at 19cc per hour. She is still producing too much acid and they think she has pneumonia, they are waiting for lab tests to know for sure. They brought her ventilator settings down to 32. I don't want to speak too soon but it looks like she is heading in the right direction again.

More Photos

1-30-07
holding Gracie for the first time

1-28-07



Coco, Adam and Miranda visit gracie again :) 1-27-07

Another Update from Jackie

Yes I did get to hold Gracie Ann on Tuesday! It was so Awesome! (I will post new photos soon) It took 3 nurses to put her into my arms, it was quite an ordeal but well worth it. She just snuggled right it and went to sleep, I got to hold her for 2 hours.

Because her swelling has gone down so much it caused a lot of leakage from her ventilator tube, so they first tried to adjust the tube. I got to stay and watch and got a quick peak at her face with no tape on it, I even got a photo that I will post. Adjusting the tube didn't work so they ended up having to pull it out and put a new one in with a "cuff" which will allow them to control the leakage.

Her feeds are now up to 9 cc per hour continuous, it was only at 4 cc per hour the other day so she is tolerating it very well. I think they want her to get to 19 cc per hour. She is well on her way :)

We are still waiting to find out what is going to happen with her pacemaker. She is still on the external one which is only meant to be temporary, she needs to have a permanent one placed but her surgeon is worried about opening her chest again because it was open for 15 days and we are worried about an infection, he said he could go in through her left side but he is worried that her left lung will not tolerate it due to being underdeveloped plus putting any foreign body into her right now will increase the risk of infection so we are sort of stuck.

Dave and I came home on Tuesday night and I am staying here for a few days to be with out other kids and to get a break from the hospital. Dave went to work on Wednesday then went to the hospital after work and slept at the Ronald McDonald House, he will come home tonight after work and tomorrow (Friday) we will head back to San Francisco with the kids for the Weekend. We have been making regular calls to the nurses for updates.

Newsflash - Jackie gets to hold Gracie for the first time today!

Hi All,

Just a quick note, I got a phone call from Jackie about 11:45 this morning and the nurses were able to put Gracie in Jackie's arms and she was able to hold her daughter for the first time today! So exciting that I just wanted to pass on the news to everyone!

3 weeks old!

(from Jackie)
Gracie Ann is 3 weeks old today :)

When I got here this morning I spoke to her nurse Helen who told me that there was a problem with the pacemaker early this morning (around 5:00 am) and that her heart rate dropped way down for a few seconds but they got it under control. However, they will have to do something with the pacemaker sooner rather than later.

The last drainage tube was removed from her chest this morning as well as her central line. She has also been taken off of the Dopamine (spelling?) and the ventilation has been brought down from 45 to 35. Looks like another good day.

GRACIE GETS BREAST MILK

(from Jackie)

Gracie is doing very well. in the last 3 days she has had 3 of her drainage tubes removed (out of 4) she came off of the Epi, came off of the lasix drip (she is now on a dose every 6 hours) she is also off of the calcium drip. She has come down on the dopamine and had her tenkhoff taken out (this was the tube from the dialysis) she has come down on the ventilator from 65 to 45 and is off the nitrous and she was given breast milk through a feeding tube yesterday. She has tolerated all of this great!

Yesterday (Friday) Dave took me to my post op appointment in Walnut Creek. (everything is fine) then we made a quick stop in Brentwood to pick up the other kids and bring them back to San Francisco for the night. They got to see Gracie again and noticed how much better she looks. They made Valentines for Gracie and hung them on the walls in her room. It was so awesome having them here. My mom came to pick them up today, they will be spending the night with her tonight and she will take them back to Chaundra tomorrow. I am already looking forward to seeing them next weekend.

Thank you everyone for all of your support, I honestly don't know how we would have gotten this far without you. We truly love you all.

I will post more photos as soon as I can.

Blessings,
Jackie

A Great Big Thanks!

This post is from Jackie & David:

Hello everyone,

I believe that this has been the longest few weeks of our lives. From the time we found out about Grace's heart condition until now has been one big stressful learning curve... and it just keeps adding up. We thought that we had done our homework by looking up everything we could on Ebstein's Anomoly; little did we know that it was just the begining.

We know now that heart problems can, and do, affect every other major organ. We have had to quickly learn about underdeveloped lungs, and arteries, shunts, liver and kidney functions, brain development, and enough about drugs for all of the above that we can only hope to forget half of it.

When this all started we were told it would be a roller coaster. We understood there would be good days and bad. We understood that this could be a long, long process. But, I don't think we fully comprehended the thrills of the highs and the depression of the lows. I don't think that we understood how quickly things could change, and how close to the edge one little girl could survive.

Grace has shown me, in the two plus weeks she has been with us, that she is the strongest person I know. Through all of the tubes and hoses and IVs and monitors and ventilators and machines that are crowded into her little room, her personality still pushes it all away and shines. You can see in her eyes the determination that helped her stay here when her medical team had given up.

Now, this is not to say that the medical team here is at fault in any way. They have been nothing but incredible stewards of our little girl's health, and the main reason she is here today. But, as Dr. Azakie said to me "She truly is an amazing little girl... I gave up before she did... and that doesn't happen."

Every day, we go into her room and hope that there are less machines, less drugs and less holes in our little amazing Grace. We have been blessed with a wonderful support group of family and friends. We know that we will never be able to thank you all enough for everything that you have done... but, please know that each day that goes by, we thank God for everything and all of you for helping us. Continue sending you prayers to Grace - she still needs every one of them.

A great big thanks and lots of love,
Jackie & David

More details for Wednesday Jan 24th - 16 days old

So more of the same information as before. Gracie is slowly coming down on drips and the medicine/drugs that they are giving her. She is starting to do a lot of the things that the drugs have been really responsible for which is good news. She is making her own oxygen now, so that machine might go away soon, but the machine that makes the oxygen is separate from the ventilator, which she may still require. One other discussion is that she may have to have a permanent pacemaker. Most doctors are in favor of it, but the surgeon disagrees. He thinks she only needs more time, so we will have to wait and see how that discussion progresses.

Stable is always a good thing

Hi Everyone, Grace seems to be resting comfortably for the last few days. They ended up closing the incision on Tuesday rather than Monday, so today is just a day of rest. I believe that they would like to take the ventilator down, but they don't want to do any more trauma to the baby. Seems to be best to just let her rest and continue to recover. Her blood pressure continues to go down and stabilize which is always a good thing. Sorry I don't have much more information at this point.

13 days old and going strong

Hi everyone,

Another update this evening. Grace had another good day today. The discussion today is that they are moving the arterial line from her belly button to her arm. (I am not certain if this has already happened or not.) Apparently this is because they are worried about either a blood clot or "burn spot" in Gracie's toes. A burn spot isn't an actual burn, more like either dead blood in the toes, which if it doesn't get better they might lose the toes. Moving the arterial line is due to the fact that if you leave the line in the belly button, there are too many organs in close proximity, and you risk a blood clot going into a vital organ. So by moving it to the arm, they would have time to respond if she still did have a clot. They also are hoping to close her up from the last surgery tomorrow, will find out from surgical team if that is able to happen.

Part of the decision around closing her up is whether her fluid levels have dropped enough. The blood pressure needs to go down, but good signs are that her kidneys are still functioning, she is still making pee, they are slowing weaning off of drugs, the ventilator, etc.

Good thing to report is that Gracie is definitely responding to her mom. She responds with Jackie in the room by squeezing her finger, she responds to voices and she seems to just get calmer whenever Jackie is around. The kids were all able to see baby Grace both yesterday and today and were happy to get to do that.

(Miranda and Colette were so happy to finally see their baby sister)

(Adam drew a picture for Gracie Ann)

We'll keep you posted on any new items as soon as we hear. Keep up the thoughts and prayers.

No news is good news

More of the same today. Gracie didn't have any dips in blood pressure or heart rate today and the Doctors are continuing to monitor her progress. One thing they may try to do in the next day or so, is wean her off of the blood pressure medication she has been on. Apparently all the medication she is being administered causes some swelling. They also may try to turn down the ventilator soon, but that isn't certain yet.

Our friend De is going to take Miranda, Colette and Adam up to San Francisco tomorrow to see mom and dad, so that should be very fun for them. We'll keep you posted on any updates.

Another turn for the better

Hi Everyone,

Just a quick update, I spoke to Jackie briefly this morning and good news, Gracie has been stable all night and had her best night to date. I'm absolutely sure all the thoughts and prayers are helping so keep it up!

ICU today - January 18th

Today there was a bit of a scare. After Baby Gracie having really the best night since her birth, Jackie and Dave stayed at the hospital overnight, and at about 7am the Doctors rushed in as Gracie's blood pressure and pulse both slowed to almost nothing. The UCSF Doctors worked on her but initially communicated to Jackie and Dave that they should get the family together to say goodbye as they thought they were out of options.

Fortunately in the few minutes that it took Jackie and Dave to get to Gracie, she had already made a turnaround and started doing much better, the Doctors were hopeful that this was a good turn, but still very conservative and obviously a critical time. She had one additional dip with blood pressure and heart rate later during the morning, but has been strong since about 11am today. The next 24 hours are still very critical but she is showing some signs of improvement and hope.

Baby Gracie Update Jan 8th - 16th

(Gracie Ann at 3 hours old. The dark area on her face is a shadow not a bruse)

Jackie went into Kaiser for her weekly Non Stress Test on January 2 and was quickly transferred andadmitted to UCSF to be monitored 24 hours a day until it would be time to deliver the baby. This was due to lack of movement on the monitor during the NST. After a week on the monitors her fetal cardiologist Dr. Lisa Hornberger decided that it would be best to deliver her (at 33 weeks) rather than wait until she was 35-37 weeks like they had hoped to do.

Baby Grace was delivered by C-Section on January 8, 2007 at 33 weeks gestation. She weighed 6.5 pounds which is good for a preemie. She was taken to the Pediatric Cardiac Intensive Care Unit where she was taken care of by Dr. Adatia. She also had her first surgery on Tuesday - a PDA ligation and they also did some work on her tricuspid valve. The surgery did not go as well as they had hoped and she was put in the ECLS machine (life support). The next day they tried to "bridge" her from the life support and she didreally well for about 20 minutes but they ended up putting her back on it. She had a few days of rest, and then they decided to do another procedure, this time they put a shunt in to help her get blood to her lungs - Dr. Azakai did both surgeries. On Jan 15th she had another procedure, acardiac cathaderization, and some tests to see if her lungs would function properly. It looks like they will but she needs time. Dr. Kent did this procedure. She was off the life support for2 and a half hours this time. It seems like she is slowly improving. Today they let her rest and tomorrow they will try to bridge her again and they will decide if they should put in a bigger shunt or not.

They did tell us that Baby Grace is a very difficult case and that they are running out of options. PLEASE PRAY FOR HER.

Jackie was discharged last Friday and Jax and Dave are now staying at the Ronald McDonald house in San Francisco. They have new cell phones and our numbers are: Jackie #925-813-9765 and David #925-813-9769. You can also leave a comment here for her.

Jackie doesn't get a chance to check email that often (They try to once a night but won't always be able to. There is only one computer for the whole house)
Blessings,David and Jackie Truhe