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.