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