Tuesday, August 25, 2009

Status quo = good news

Yesterday's appointments all went very well (as did last week's -- forgot to update afterwards). As we wrote in prior weeks, the only thing we were a little worried about was how much her hydrocephalus would build up before leveling off. In the month or so following the surgery, the measurement of fluid in her ventricles increased about one mm per week, and we were worried that might continue. Well, the past two weeks they have held steady; they are now at 10 mm and 11 mm (up to 10 mm is within normal range, and 11 is nothing to be worried about). A very good sign; hopefully they continue to stay where they are at.

Another good sign is that the past two weeks they have noticed some spinal fluid in a certain spot near the brainstem. This is a very positive thing. Kaitlyn has what is called the Chiari II malformation, which is a common symptom of spina bifida; it occurs when the open lesion in her back allows spinal fluid to leak out, which causes a downward suction that pulls the lower portion of the brain into the top of the spinal column. (Kaitlyn's Chiari was down to the C3 vertebrae, slightly worse than the average kid with spina bifida, which typically is at around C2.) Severe Chiari can cause various problems with eating or even breathing. Well, the fluid they have noticed over the past two weeks in that area is a good sign, indicating that the brain is beginning to be buoyed back up and will hopefully reverse the Chiari altogether.

Shelly is feeling very well lately. The past two weeks, like before, they have found no signs of labor, and no other issues to worry about. This Friday will be a big milestone for us -- Kaitlyn will be 30 weeks along that day. They tell us we should feel pretty good about reaching 30 weeks; and if she makes it to 34 weeks, we should be jumping for joy. At that point, Kaitlyn should be pretty much fully developed and just packing on weight. If she's still patiently waiting, they will deliver her by scheduled c-section at 37 weeks (which would be mid-October). We'll see. They tell us that the average baby with this surgery comes around eight weeks after the surgery; it's been nearly six weeks already! No surprises yet, so we'll keep hoping and praying for the status quo.

More fantastic news: our other two kids are here with us, probably for the rest of the time we are here. Shelly's brother Mike brought them up to us this morning, and he will stay with us too (they want us to have a second adult to help care for the kids, and to be available to watch them if I need to rush Shelly in to deliver). We really appreciate him being here. And we are so happy to have our little Damon and Audrey here for good. Hopefully we can keep them from climbing all over mommy too much.

Sunday, August 23, 2009

Strength through trials...(and this clinical trial)

I just wanted to do a quick post about how grateful I am for some of the blessings in my life right now. Obviously, it has been a rough few months for us. Our lives changed forever on June 23 when we found out about Kaitlyn's spina bifida. That first week I spent reeling with the newness of the diagnosis and coming to terms with the changes we would be facing. But since then, I feel that my Heavenly Father has blessed our family so much. First with strength and knowledge that we were capable and able to face this new challenge. Then with appreciation and gratitude that I get to be the mother of 3 amazing little children that I am crazy about. Kaitlyn will be a special little girl, just like my Damon and Audrey are special little ones. We are so grateful for the blessing it is to be parents. Since then, we have had the opportunity to make a difference in Kaitlyn's life through a surgery that only about 75 women in the country have had since 2004. It feels amazing to know that we had the blessing to intervene in the middle of this pregnancy to help our little girl. During all of this, I have had a husband who has been available to take care of me and keep me company. There is no one I would rather spend time with, and we've been so lucky that he has been here. Also, we have such incredible family support. Without my family in Hurricane, and Kendall's in Corona, there is no way we could have participated in this study. Our children have been in such loving and capable hands. They have rearranged their lives to care for Damon and Audrey, and have brought them to us so that we don't have to go for months without them. And before that, when we first came out here, my cousin Ariel and many friends in our ward back in Texas helped care for our kids for that first week when we weren't yet sure whether we'd qualify for the surgery. Also, when Kendall went to Texas to interview last week, his Aunt Donna dropped everything at the last minute to come stay with me, and we are so thankful that she was able to come out. Tomorrow night, my brother Mike is driving our babies to San Francisco to stay with us for the long haul. We appreciate the sacrifice he is making, to bring them to us and help us to take care of them in the Family House. I have never felt so much love and support in my life as I have these last 2 months.

At first I thought that I would never be able to get through the rest of this pregnancy without crying every day, and fighting off depression, but I have since felt so much strength and appreciation for the blessings in my life. The more we have learned about spina bifida and met children and families dealing with it, the greater appreciation we have that this will be something our family can manage, and that everything is going to work out. Many others we know are dealing with so much more difficult circumstances. Since we have been staying here at the Family House, we have met some amazing people who have been coping with cancer, and I am so astounded at their strength and courage. We have also had friends who have lost children, and I marvel at the grace and faith they have shown during the most devastating of times. I truly do believe that our Heavenly Father will not give us more than we can handle, and that he will be there to comfort and support us through whatever new challenge we are chosen to face. I appreciate so much the prayers that have been offered for our family, and have felt overwhelmed with love from all of our family and friends. So thank you all for making this experience a little bit easier for us to handle. We are so grateful.

Monday, August 17, 2009

Wifi!

The wireless internet is finally up and running again at the Family House. This is great news for us, as we have been using the shared library with it's ultra slow computer, and having to set up the camera each time for skype so we can talk to the kids in the library. Also, we should be able to include a few pictures now that we can post from our own computer. And, if you have ever had as much free time as we have right now, you will understand how nice it will be to have the internet. So, that is the first bit of good news.

The kids are doing well. They just spent the last week in Corona with Kendall's family. They had a great time swimming, playing with the dog, having another birthday party for Damon, going to the beach, going to the train museum, playing with their cousins Luke and Sydney, and just being very loved by their grandma, grandpa, and aunt and uncle. They went back to Hurricane on Sunday, and Damon had his first day of preschool today with his cousin Ian. Grandma Ferrin also bought him a spiderman backpack, so I think he's feeling pretty good about himself right about now. We wish we could have been there to see him off, but Becky sent us some really cute pictures. Audrey is doing really well and is at a really good age for all of this. Damon has been having a little bit of a harder time, after seeing us and then having to deal with all the changes. I think everything he's going through is really normal, and 95% of the time he is just having a great time with our families. Their being away from us truly is by far the hardest part of all of this. I just wish I had my adorable, smooshable, kissable kids around all the time. I can't wait until we are back together as a family, the way things are supposed to be. They are coming up for a visit at the end of the month with Grandma Kari, and we can't wait!

We are also in limbo with a possible job opportunity, so things could be changing for us soon. Kendall's aunt will be staying with me while he flies back to Houston. We are so grateful that we have such loving families who have been there for us through all of this. We are trying to have faith that whatever is supposed to work out for us will. It has been a huge blessing to have Kendall here, and whatever happens in the future, I know that he was supposed to have this gap in employment so he could be there for me and our family.

Tomorrow is this week's big day of dr. appointments, so we'll update after that with how everything is going. I think these updates are really important for us to be able to look back on and remember what happened. Blogs are definitley the new journals. I feel Kaitlyn kicking me all the time, and it makes me really grateful that of all my babies, she is the one who feels the need to put on a show all of the time. It's quite reassuring.

Now that we have wifi we finally are able to post pictures, so here are some from our last visit with our kids in San Francisco:



Tuesday, August 11, 2009

Another week down...

... and hopefully a few more to go. Shelly's now 27 weeks 4 days along. We had another day full of appointments yesterday, and just about everything is holding steady. No contractions, and her cervix still looks great, so hopefully she'll stay inside for a while yet. Shelly had been experiencing some localized pain on her right side, which we were a little concerned about, but they checked it out on the ultrasound, and the OB told us not to worry; it's probably from the scar tissue near the incision site being stretched as the uterus expands. As for Kaitlyn, her ventricles (see last week's post) increased again slightly, and are now about 11 mm, so they are now officially higher than the "normal" range. As we mentioned earlier, the trend is a little worrisome but not unexpected, and we'll just have to keep hoping and praying that it will level off soon.

We were so sad to see our kids leave last Thursday, but we are so grateful for the week we had with them. Again, many thanks to Shelly's family for watching them for so long and for bringing them out to us. They're now down in southern California with my family, and will hopefully make another trip up here in a few more weeks. We've been taking it pretty easy lately since the kids left; Shelly was a little wiped out from all of those trips around town with the kids, and she's also had that pain in her side, which subsides when she's lying down. So we'll continue to take it slow, and to hope and pray for the status quo to continue.

We also got to meet over dinner last night / lunch today with some other families who had done the MOMS study, two that had postnatal surgery and one that had the prenatal surgery. They were all in town for their two-and-a-half year checkup (after Kaitlyn is born we'll return to San Francisco at 12 months and 30 months so they can see how she is progressing). It was great to meet them all, and to see their beautiful kids. Each is dealing with various issues from spina bifida and to varying degrees of severity. But it was reassuring to see how much they are just like any other two-year-olds. Every case is so completely different, even for kids who have lesions at the same level, so we'll find out as we go what particular needs Kaitlyn will have. But no matter what they are, they won't define her; she will be a normal little girl in most ways, and will probably have huge cheeks, love to sing, and say ridiculous things, just like Damon and Audrey. We can't wait to meet her. Well, we can, actually -- hopefully at least a few more weeks.

Please keep the Stansels (from our ward in TX) in your prayers; their story, for those who haven't heard, is at http://stanseljourney.blogspot.com/. Our hearts go out to their family, and we hope their little ones that are still in the hospital hold strong.

Wednesday, August 5, 2009

Superbabies

We've had Damon and Audrey with us for almost a week now. Can't believe they're about to leave already! (Tomorrow.) Many thanks to Shelly's mom and sister Becky for driving them out to us and helping us so much with them all week. It's been fantastic having them here. Taking care of them in our current living situation is a lot of work (especially getting Audrey to nap or sleep at night, since we all share one room), but they are SO much fun. We had a little party to belatedly celebrate Damon's birthday. He loves the playground in Golden Gate Park. It has this big concrete slide and a bunch of cardboard pieces that kids can sit on to ride down, and Damon loves it. He's been a joy to have around, and had a few funny lines, such as, "Audrey's scared of tacos" (not really, he just didn't want to eat them) and "I made a pee!" (which, happily, was the letter and not an accident). Audrey absolutely loves this Dora video grandma got for her, with an episode with "superbabies" that she always wants to see. It is hilarious hearing her repeatedly ask for "supobaby!" It's our line of the week. She says "iss a dinosowa!," can count to eleven, can sing about thirty or forty songs and does a million other funny things.

Monday we had another day of appointments, and Kaitlyn and Shelly are still both doing very well. There are still no contractions and the cervix looks long and thin (i.e. not close to labor), so hopefully that will continue. Kaitlyn is still very active; they do this test where they watch her movements on the ultrasound monitor to see if she does everything she's supposed to for her age, and they were able to check off all 8 of 8 within two minutes. Her legs are still kicking well, which we're always thrilled to see.

The one thing that makes us only slightly concerned is a very slight trend of building up of cerebrospinal fluid (CSF) in the brain. The ventricles, which are basically sacs that hold fluid to cushion the brain, should normally measure up to 10 mm in width. Kaitlyn's ventricles measured 6 and 7 in the days just prior to the surgery; last week they were 9 mm, and this week they are 10 mm. So she's still within the normal range; it's not really scary until it gets up to 16, 18, etc. And there is the obvious issue of measuring error; millimeters are pretty small, and each ultrasound tech might get a slightly different result. So we'll see over the next few weeks if this trend continues. We kind of expected this, though. Before the surgery the CSF was leaking out of the lesion in her back, and now that escape route is closed. The rationale behind the surgery, as Dr. Gupta (Kaitlyn's neurosurgeon) explained, is that our brains are normally able to reabsorb all of the CSF they produce. A baby with spina bifida, because the CSF leaks out of the open spinal column lesion in her back, doesn't develop the normal systems for reabsorbing the CSF. They don't yet understand how those systems really work or at what gestational age they ordinarily develop. But the hope is that by doing this surgery, the brain will have a few extra months during which it will hopefully have time to develop those systems. So it stands to reason that there should be some buildup of CSF after the lesion is closed; we just hope that her brain learns how to reabsorb it in time.

Shelly, by the way, is doing fantastic. She still gets tired quickly and there are times when she feels nauseous or in some pain, but every day does seem to be better. We've been getting out pretty much every day since the kids got here -- the park, out to restaurants nearby, church on Sunday (we went to all three hours), a few drives around town, to the mall, to Fisherman's Wharf, the beach, and today hopefully the museum or the zoo -- and we just push her in the wheelchair, and she feels fine. It's been a great week with the kids.