Sunday, November 22, 2009

Great news

We got some fantastic news this week. The pediatrician at the Houston spina bifida clinic was amazed at Kaitlyn's leg strength and movement, and told Shelly that she would definitely be able to walk someday! She said her leg function was about the same level as kids with lesions starting at the S1 or S2 vertebrae (meaning she may be able to walk with no assistance at all or with ankle braces), even though Kaitlyn's lesion was much higher, starting as L2 (we would have expected her to need full-leg braces and crutches, and maybe be confined to a wheelchair when she gets bigger). Of course everything is still "wait and see," but we are SO happy that things are looking so promising for her.

Our kids are all so fun right now. Damon is an incredibly sweet little boy. He is very kind to his two little sisters, and often will say to Kaitlyn, "Who's a cute baby? Who's a cute baby?" He is very helpful, and is our little errand boy. He has been going to preschool and loves to learn his new letters. He is very social, and very funny. He's been watching old He-Man episodes on Hulu with his daddy, and gets so excited when Adam and Cringer turn into He-Man and Battle Cat... his heart rate probably jumps to around 300 every time. He also has an imaginary friend named "Bony," who he only mentions once every couple days. Apparently he has "bone teeth," probably inspired by Skeletor. But he's not scary, and he tells us knows he's just pretend. The other day he was saying his prayer and just casually prayed for "the other member of the family, Bony."

Audrey is most certainly two. She gets into every cupboard, cabinet, drawer... and the way she climbs, nothing we own is beyond her reach. She is such a bruiser and always so active that she keeps getting hurt -- she burned her fingers and arm on a hot pizza pan the other day -- but she's so tough that she doesn't mind as much as we do. She and Damon love to go play in their "rocket ship," which is just one of the cupboards in our kitchen. Her vocabulary has exploded, and can pretty much communicate everything she wants to us. This morning she said, "Mommy, I so pwetty." She is always showing off, saying "Wook at me!" She loves to point out "twees" and "fwowows." She calls her daddy "Kenno." Tonight she was encouraging Damon to kick the "socco baw!," saying, "You can do it, Danin!" It is an often frustrating but very fun age.

And Kaitlyn, again, is doing awesome. She rolled from stomach to back. Her legs are SO strong; sometimes we think they are even stronger than our other kids' were. Maybe we just think that because we have to fight her kicking when we catheterize her, which we only have to do that 4 times a day now. In pretty much every other way she is just like our other kids(including the acid reflux; she's on Zantac, which helps), especially in appearance. She looks just like they did. We love all of them so much.






On another note, there is a family we got to know when we lived in the Family House in San Francisco who could desperately use any help that anyone can provide. They learned that their 3-year-old son, T.J., had a brain tumor this past summer, rushed him into surgery, and are now slowly watching and praying that he regains as much function as possible. They are wonderful parents and have been through so much, living for months on end in that house with their 9-month old son and spending all of their time in the hospital. He's going through both radiation therapy and chemo right now. Any help you can provide, even a few dollars, would really bless their family. There is a website you can donate through, www.donationsfortjgarcia.com. Thanks so much for your help.

Saturday, November 14, 2009

At long last

... I found a new job. It's a litigation boutique firm called Edison McDowell & Hetherington (see here). I started on Thursday, and so far am quite happy.

It was quite a whirlwind, but it couldn't have come at a better time, as it plucked me away from a miserable contract job doing an electronic document review. For those who don't know, firms often hire attorneys on a contract basis for weeks at a time to review documents. This firm was, no surprise, up against a deadline and needed a ton of the client's employees' emails reviewed. But the client wanted to staff the project leanly, so there were six of us staring at computer screens 84 hours per week and clicking furiously (e.g. this document we can produce, this one is privileged, this one is irrelevant, this one screws us over, etc.). And it was a patent case involving mechanical parts for downhole oil well operations, so the emails we were reviewing were all written by engineers. No offense, Dad, but you guys write very, um, 'technical' (i.e. soul-crushing) emails. My back and eyes were quite displeased; my eyeballs would quite literally shake in their sockets for the last three or four hours of each day. Plus, almost every day I had an interview or a meeting with a recruiter or something like that, which would take up a few additional hours. Add that to a 45-minute commute, and a newborn who enjoys slowly savoring her bottles in the middle of the night. I've been in a few trials before, where we'd work 22-hour days for a few weeks straight, and even that was more tolerable; at least then the work is interesting and you can let your eyes drift from the computer screen occasionally. We were grateful to have some income, but I deeply resented the invention of email and its unfortunate effect upon the practice of law.

In the midst of this, on Tuesday morning, I got a call from a friend from my old firm. He had been networking and advocating for me, putting me in touch with various people he knew around town. Apparently he had mentioned my name to an old law school friend of his, a partner in a small litigation boutique, and by happy coincidence, he and his partners had just decided the day before that they needed to hire someone new. They wanted me to give them a call, and when I did, they asked if I could come in that afternoon. I didn't even have a suit, since I was downtown slogging away on the document review, but they didn't care. The interview went great; I met with all three of the named partners, and they wanted me to come back the next morning to meet with their fourth partner, who works up in Dallas. On Wednesday morning I met her and a few of the associates, and then they offered me the job right afterwards, saying they would be eager to get me started the next morning, Thursday. After a 3-minute phone call to Shelly (who didn't need any convincing), I accepted and then gleefully skipped off to go quit the contract job.

So far the firm has been great. The partners and everyone else are all extremely nice, friendly, likable people, which for me is by far the most important factor affecting whether or not I enjoy my job. The pay is less, but enough for our needs. The firm is quite busy -- they started with eight attorneys just this past January, most coming from a bigger Texas firm (Bracewell & Guiliani). In the ten months since they have now hired nine more attorneys; all of their clients followed them from Bracewell, and they just keep getting more and more work. The environment is much more collegial and close-knit than at my prior firms; everyone seems very proud of this new enterprise and dedicated to building it up. And so far, they really like my work product. I know it's only been two days, but it looks like I'm really going to like it there.

To yet again restate the obvious, we absolutely recognize and are deeply grateful for the way our path has been so unmistakably guided. It's not even remotely subtle. My last day at my prior job was in July. One week later went to San Francisco and qualified for an extremely rare surgery which so far appears to have been a wild success. It would have been infinitely more difficult for Shelly to have gone through that alone, if work had kept me in Houston. And then, just weeks after returning, I find a new position, one that so far looks like it will be a great fit for me. We've been so incredibly blessed, clearly much more so than we deserve. So again, many many thanks for all your prayers, your faith made it happen.

Monday, November 2, 2009

Kaitlyn kicks!

We wanted to post a video showing you all how well Kaitlyn is doing. As you can see, her legs move quite well. Of course, her legs weigh mere ounces now, and we can't guess yet how strong and coordinated they will be when she gets bigger, but we are very optimistic.

video

Saturday, October 31, 2009

Spina bifida 101

We've been home for two weeks now, and are loving every second of it.  We're still amazed at how nice it is to have our own kitchen and bathroom, ceiling fans, TV, cars in the garage (as opposed to parked six or eight blocks away), and the list goes on.  Mostly, we are enjoying having our family all together in one place.

Kaitlyn is now five and a half weeks old.  Next Friday, the 6th, would have been her due date, and she is determinedly packing on the pounds.  There's no way she'll catch up to Damon's pace (17 lb at 2 months!), but she's doing pretty well.  At her last checkup on October 20, she weighed 6 lb 6 oz, so she had gained about an ounce a day since she left the hospital.  At that rate, she's probably around 7 lb today.  She's a very good baby, calm, has her alert times, and is occasionally smothered by her brother and sister.  A few pics are posted below.

We wanted to give a quick summary of how she is doing in each of various areas that are commonly affected by spina bifida.  (Tamara, Rachel, and any of you parents out there, hopefully we're not too far off in how we describe things below.)  We'll try to do the same thing every so often down the road, just so you all can get a picture of her status as compared with what one might expect.
  • Hydrocephalus:  Up to 90% of children with spina bifida have some degree of hydrocephalus, or fluid buildup in the brain.  Kaitlyn technically has this -- her ventricles have measured a little high (see here) -- but it is not symptomatic.  We're watching her carefully for symptoms like excessive vomiting or fevers, measuring her head size, making sure her fontanels don't feel full, making sure she's alert, etc.  We've read that for babies who had the prenatal surgery, the median length of time after birth for ultimately needing to have a shunt placed is about 180 days, so we'll need to keep watching this for a while to come.  But so far so good.
  • Chiari II malformation:  Where the brainstem is pulled down into the cranial vertebrae, leading to the hydrocephalus described above.  Children with this can also develop problems with swallowing, breathing, etc.  Kaitlyn had this malformation in the womb, but it was reversed by the prenatal closure, as we had hoped.  (We wrote about this in our  October 7 post.)  
  • Leg mobility:  The most obvious symptom of spina bifida is some degree of paralysis and loss of sensation in the legs.  Kaitlyn's level of myelomeningocele (hers was from the L2 to S1 vertebrae) would be expected to need crutches and long leg braces up to the thigh or waist, and would probably need a wheelchair for long distances (see here).  But we, and all of the nurses at UCSF, are amazed at how strong and active her legs are.  She kicks very vigorously at times, moving her hips, knees, ankles, and toes, and appears to have at least some sensation when we tickle her feet and legs.  We'll have to just wait and see when she gets older how well she does with crawling and attempting to stand or walk.  
  • Orthopedic problems:  Children with spina bifida are more likely to have clubbed feet, hip dislocation, and scoliosis.  Kaitlyn does not have any of these issues at this point.
  • Bladder issues:  Nearly all people with spina bifida have some bladder dysfunction.  When Kaitlyn was born, she had some slight hydronephrosis (swelling of kidneys), so they had us regularly catheterize her each time we changed her diaper.  The day she was discharged we took her to get urodynamics, where they fill her bladder with a dyed liquid and take X-rays to see how her bladder reacts.  There was some good news:  they did not observe any reflux of urine back up to the kidneys, and her bladder looked smooth and elastic like it should be.  But they did observe what they call dyssynergia; when the bladder constricts to push out urine, the sphincter at the bottom should relax to release it into the urethra, but Kaitlyn's constricted instead for a few minutes, so she wasn't able to release it when she wanted to.  She does usually urinate on her own, but we'll keep catheterizing her (5-6 times a day) just to make sure she voids as she should.  As of now, this is the only major difference between her and our other newborns.
  • Bowel issues:  Children with spina bifida often have bowel problems leading to chronic constipation, and often need a bowel program to gain social continence.  This has not been a problem for Kaitlyn yet; usually this is not an issue until they start eating solid foods.  Many newborns with spina bifida do tend to void all stool constantly, creating severe diaper rashes.  But Kaitlyn doesn't have a rash yet, and it looks to us like she is intentionally pushing out her BMs; we see her grunting and pushing.  We don't know if this means anything yet, but we're hopeful because it appears that she does have some feeling and control in that area.
  • Tethered spinal cord:  This is where the cord gets tugged by scar tissue near the site of the surgery, which can over time lead to further nerve damage.  If any such problems develop in the future, she may need surgery to release the tension.
  • Visual problems:  Children with spina bifida often have strabismus, where one or both eyes turn in or out.  Kaitlyn's daddy had that condition (and even had two eye muscle surgeries to correct it), so we're definitely not counting that out yet.  But so far her eyes don't appear to drift too much.
  • Learning difficulties:  Learning difficulties can be caused by hydrocephalus, infections, etc.  We obviously won't have any way of knowing whether Kaitlyn has any such problems for awhile.  Yet another "wait and see" issue.
  • Latex allergies:  Up to half of all kids with spina bifida are latex sensitive, so we will need to be very careful to avoid any products -- medical supplies, rubber bands, tires, balls and other toys, etc. -- that may contain latex. 
So there's a sum-up of the various issues we will be watching as Kaitlyn grows.  So far she seems to be doing very well, and we are so grateful for that.  As always, we thank you all for your prayers, understanding, love, and support.  Looking back on how scared we were when we first got the diagnosis, it's incredible how much more hope and optimism we have that she can have a happy and fulfilling life.  She is a beautiful little girl, and we are so glad to have her in our home.  And she is cute, right?



























Wednesday, October 14, 2009

HOME!

  I can't believe the day has finally come.  I fly home to Houston with Kaitlyn in a few hours, and Kendall will make the LONG drive back after dropping us at the airport.  Kaitlyn couldn't be cuter, and we absolutely love having her with us all the time.  Now we just need to pick up Damon and Audrey and we'll be together as a family again.  Life is good.  Thanks for all the prayers.  Kaitlyn is doing great, and we are so grateful.  So, get ready for us, we're on our way!!

Wednesday, October 7, 2009

Good MRI News

We were up bright and early this morning to take Kaitlyn to have an MRI.  They had to put in an IV to sedate her throughout.  She did well, but when they woke her up, they had to give her oxygen for awhile, and she was quite drowsy all morning.  So, before I explain what the MRI showed, you should know that when I had the two MRI's during the pregnancy, they showed that Kaitlyn's Chiari II malformation went down to the C3 vertebra.  That means that her brain had been pulled down by the suction that the opening on her back had caused.  Kaitlyn's Chiari was slightly worse than the average baby with spina bifida (about C2).  My theory is that she had an open lesion (not covered by a sac), and thus there was a greater suction.  That, I believe, is also the reason why her ventricles were so small before the lesion was closed during fetal surgery.  Once closed, the suction stopped, and her ventricles began to slowly fill with fluid.  The last week of my pregnancy, her vents were measuring 14 and 11, which is slight hydrocephalus.  Since birth, those numbers have held steady and not increased.  We'll keep watching.

So the great news from the MRI today is that her Chiari has completely reversed.  Her brain is now in a normal position, which is awesome.  We are so grateful that we were able to do the surgery.  It was definitely not an easy journey, but we choose to believe that all of the positive developements that we've seen in our daughter are largely due to the early intervention.  We're thrilled at each bit of good news.

It's looking like she'll be released by Tuesday of next week.  That would put me back in Texas in a week!  Hooray.  Then Kendall will drive to Utah, pick up the kids, and continue the 24-hour drive down to Houston.  I can't wait to have all of us together again.  There are 2 little ones that are just waiting to be tickled and smooshy kissed.   

Monday, October 5, 2009

Baby steps

Kaitlyn is doing very well.  It seems like every morning when we get to the hospital she has learned something new.  She is no longer in the incubator, because she is able to hold her temperature.  Once in a while she'll have a day where she is quite drowsy, but most days she seems more and more alert.  After losing a little weight, yesterday she finally started gaining, and is now slightly up from her birth weight.  She now weighs a hefty 5 lb 3 oz, and counting.  They now have her eating 45 ml (1 1/2 oz) at each feeding.  She tolerates it well, but occasionally has trouble staying awake for the whole feeding.  They put an NG tube from her nose to her stomach to finish off all of the feedings that she is not able to complete on her own (which at this point is all of them).  Yesterday she did drink 35 ml from the bottle, which is the most she has done on her own.  Her back is healing amazingly; you can see in the last two pictures below that her skin has almost healed entirely.  The second-to-last picture is the day after she was born; the white areas are the gaps where the skin had not quite closed yet over the skin patch, and as you can see in the last picture taken yesterday, our little Wolverine has incredible healing powers. Cathing is going well.  It is now very easy for us to insert, and we're glad that it has not been difficult to learn.  Her leg movement is still great for how high her lesion level is.  When we place her on her tummy, she is almost able to push up onto her knees.  Her head size is at the 50th percentile for her age, and no one has noticed anything that would make them think she might need a shunt soon.  She will have an MRI tomorrow, and that should tell us quite a bit about what is going on in that cute little head of hers.  Quick warning: I'm going to go into a little bit of diaper talk, so feel free to skip over this next part.  One thing the nurses told us is that most myelomeningocele babies tend to constantly dribble their bowel movements out, because there is not much sphincter control.  So, they typically have a terrible diaper rash.  But Kaitlyn seems to have some control, because her diapers are not always dirty, and she has not developed a diaper rash at all yet.  This may not seem terribly exciting to most of you, but we are thrilled that her little bum is not sore yet.  So, there you go.  The latest on our little cutie pie.  We love holding and cuddling her, and can't wait until she's well enough to come home with us.

Kendall's parents were able to come up last week, and spent a lot of time in the NICU with Kaitlyn.  It was great to have them, and we're so glad they got to meet her before we took her halfway across the country.  Damon and Audrey are still in Hurricane with Grandma and Grandpa Ferrin, enjoying all the great family and cousin time.  Damon told me that I "better gotta watch the mouse movie (Stuart Little) when we get back to our house."  I can't even begin to tell you how happy it will be to be together as a family back in our own home.  I am so excited to see how the kids do with Kaitlyn, and to be able to care for and pick up my children.  That was really tough when they were staying here, because I could not lift them, or hold them like I wanted to. 

I was looking back at the posts we had written after the prenatal surgery, and I cannot believe the difference between that one and the c-section.  Night and day.  I guess not having had a caesarian before, I thought that the fetal surgery was not too different, but hindsight certainly tells me otherwise.  I am really fortunate to have healed wonderfully from the c-section, and out of necessity, am already walking about 1 1/2 miles a day to and from the hospital on no pain meds.  I am absolutely astounded that I feel so good.  It was a long and hard pregnancy, and it is wonderful to have her out and not in.

So all in all, things are going great.  Kaitlyn is on a good track to be released at the end of the week, if nothing goes wrong, and we are getting closer and closer to the end of this road and the beginning of a new one.  We're so grateful for all of the prayers and service we've recieved and we can't wait to see all of our friends in Houston again.



Tuesday, September 29, 2009

Update

Kaitlyn's doing well.  They moved her from one wing of the ICN to another; it's a good thing that she's not as "high priority" to them anymore.  She's hitting all her benchmarks; they've increased her feedings a few days in a row, so now she's up to 30 ml (one ounce) every three hours, and tolerating it well.  She still has a few episodes of apnea and bradycardia (see last post), but they'll keep an eye on that.  They had to move her IV to her forehead, so she looks like a little unicorn.  We have to continue straight cathing her for now because her kidneys were slightly swollen the day she was born, but they aren't too concerned.  They will do urodynamics when she is discharged, which is where they evaluate her and tell us whether and how often she will need to be cathed when we bring her home.  We've both cathed her quite a few times and are already pretty comfortable with it. 

Shelly was discharged on Sunday and is doing great, feeling better than she has in months.  So we're back in the Family House for now.  We miss our other two kids, but are grateful for the chance to relax and focus on Kaitlyn.  We go in every day for a few of the feedings, to help change her and cath her and do all that fun stuff.  Grandma Burr is in town and is excited to see her today for the first time.

 

Saturday, September 26, 2009

Kaitlyn Ava

Yep, we finally picked a middle name.  She's doing great.  She still has a few episodes a day of apnea and bradycardia, where she forgets to breathe and her blood pressure drops; pretty common for babies this age, and most of the time she remembers to resume breathing on her own (they're on top of it if she needs help).  She's eating from a bottle now, and is digesting her food better.  Yesterday they removed the restriction on Shelly, so she's been able to go in to see Kaitlyn.  We've been able to hold her, and to help feed, bathe, and change her.  And we've each catheterized her a few times, which we are getting used to.  They tell us most newborns resist cathing a lot more than Kaitlyn does, so she probably has less sensation in the area; thus, it's more likely that she'll need to be cathed throughout her life.  But we expected that would be likely.  She's doing pretty well overall; no increase in head size, lots of strength and mobility in her legs, and her back is healing well.  A nurse from the Fetal Treatment Center who sees all the MOMS kids tells us that her back looks fantastic.

Shelly's mom flew in yesterday morning, and she and Mike brought Damon and Audrey in to the hospital for a few hours yesterday and today.  This afternoon we said our goodbyes, and they all flew back to Hurricane; we'll stay here until Kaitlyn is ready to be discharged, hopefully a week and a half or so.  We'll really miss them, but it will be good to rest a little while so Shelly can heal, and so we can figure out how to care for a spina bifida baby, regroup, and prepare for the months ahead.


Thursday, September 24, 2009

Day Two

Kaitlyn's second day was a good one.  They slowly weaned her off of the ventilator overnight, and took out the breathing tube for good this morning at around 6 am, about 24 hours after delivery.  They put a tube into her stomach to vent gas, which you can see in the pics below, and she still has an IV in her hand for antibiotics and nutrition.  The next big challenge is learning how to eat. Shelly's been pumping for her, and Kaitlyn ate for the first time this afternoon; they had me just feed her on my lap, just holding a syringe and letting gravity pull it down through the tube into her stomach.  (She should learn to suck and swallow on her own in a week or so.)  But it didn't sit well; she had some bile buildup in her stomach, so they decided to take a break and try again tomorrow morning.  Not too unusual for her age.  Overall, she's very healthy, breathing on her own, no serious infections, and everything on track.

Shelly's still doing great.  She's almost entirely over the flu; she still has the occasional cough, which is quite painful around the surgery site, but most of the time her pain is tolerable.  It's frustrating that she can't see Kaitlyn, but hopefully soon they'll determine she's healthy enough to go into the nursery.  Her mom is flying out tomorrow morning, will stay for a couple of days to oogle the baby, and then drive back to Hurricane with Damon, Audrey, and uncle Mike on Sunday.  My mom will come out next week. 

The nurses helped me learn how to do a few things throughout the day.  I cathed her for the first time, which will definitely take some practice (and we will get plenty of it).  And they showed me how to treat her back, which was pretty simple.  I posted a picture below of the lesion site.  The whole circular area is what was originally covered by the synthetic patch they put on her during the fetal surgery ten weeks ago; as you can see, her skin is growing over and has almost closed entirely on its own (the two whitish areas where the patch is still showing through).  Everyone tells us it's healing very well, and the neurosurgeon seemed pretty happy with it, so it doesn't look like she'll need another surgery; she'll heal over on her own.  








Wednesday, September 23, 2009

Birthday

Our little Kaitlyn was born at 6:12 this morning and is doing quite well. She does need a breathing tube, which is not uncommon at this stage -- she was a little over six weeks early (gestational age was 33 weeks 5 days). Babies who have had fetal surgery typically come on average about eight weeks after surgery, and she lasted almost ten, so she is already beating the odds. She is breathing mostly on her own; the ventilator is helping her to be able to expand her lungs enough. They've already started weaning her off of it, decreasing the rate from 50 bpm to 40 and now to 30.  They've taken a chest x-ray and done some bloodwork to test for infections, and they haven't yet seen any issues related to prematurity other than getting her to breathe on her own. They tell us that she has been pretty feisty and vigorous when awake, so they're pretty confident she will be entirely off the ventilator soon, hopefully sometime tomorrow.

Shelly is doing great. She woke up with contractions at around 3:30 this morning, so we threw a bag together and took a cab to the hospital. About five minutes after we checked in, her water broke. She was already dilated to 5. The surgery happened very quickly and went smoothly. She did have some rough times today, some vomiting and pain and grogginess, but the past few hours she has felt better than she has in a long while. She's had a flu -- probably the famous H1N1 swine flu -- for about two weeks and it was positively horrendous, but she was finally starting to turn a corner yesterday. Being on an IV all day has probably helped as well. She's amazed that today, even while recovering from a c-section, can feel worlds better than she felt just a day or two ago. And there is absolutely no comparison between this recovery and the nightmarish aftermath of the fetal surgery she had ten weeks ago. She still has some pain, of course, but it's tolerable.

I've posted a few pictures of Kaitlyn below. Will post some better shots of her face without the tape mustache, once they get the breathing tube out.  She posed with a few silent cries -- silent because of the feeding tube, which goes through her vocal cords.  I couldn't catch her with her eyes open; they look dark blue. She's got some hair, much lighter than Audrey's was when she was born; but Audrey's is has lightened quite a bit, and Damon's is practically white, so it looks like we'll have our third little towhead. She is almost 17 inches long and weighs 5 lb 1 oz, pretty good for her age (average at 34 weeks is 4 lb 12 oz). We heard her crying right after she came out, but they whisked her away pretty quickly. Shelly only got to see her for a few minutes, and then they decided she should probably stay out of the nursery for at least a couple more days because of the flu she had. So that's just about the biggest bummer of the day, that she won't be able to see her daughter for awhile; I'm trying to take lots of pictures for her.

Kaitlyn's back has healed fairly well. I couldn't get a picture of it since they keep it covered, but we saw it briefly; the skin has mostly grown over the skin patch they put on her two months ago, covering I'd guess about 80% of the previously open area. She might need another minor procedure to close the rest, but they may just wait to see if the skin continues to heal on its own. We'll see about other spina bifida issues in the weeks ahead. I've seen her move all six joints in her legs, and she squirms her toes when I tickle her feet, so she does have some sensation there. We're not sure yet about bowel and bladder function, but will find out how things go over the next few days. Hydrocephalus is the most nerve-wracking of the wait-and-see issues. At last checkup on Monday, her ventricles measured 14 and 11 mm. The one that is 14 was up slightly yet again from the previous week, and about twice what it was before the surgery. But we're trying to stay positive. We will keep doing ultrsounds and measuring her head circumference, and hopefully her body will learn how to reabsorb the fluid without requiring a shunt.

Thanks again to everyone for your prayers. We truly do feel blessed. Everything has worked out so well for us. We are so grateful to have had this surgery, and that she waited as long as she did. We will keep everyone posted.


Friday, September 18, 2009

Sick, sick, sick

So, these last few weeks have been almost as fun for me as the couple of weeks after surgery.  I am currently on day 10 of what I have begun to believe is swine flu.  The worst of the symptoms have been a horrible hacking cough (which has made my already tender post-surgery stitches ache all the time), a nose that has temporarily turned into a faucet - I haven't tasted anything since the beginning of last week, all over achiness, headaches, general third-trimester uncomfortableness with being in bed all day, and just recently, nausea and vomiting.  Oh, life is good.  Actually, my Dr. just prescribed Tamiflu yesterday, and I think that that is what led to the vomiting.  I'm supposed to take that for 5 days, and I am really counting on the fact that this will all be a distant memory by then.  Luckily, even though we are stacked with 5 of us in one bedroom, Kendall is the only one who has been sick as well.  He was down and out for about 3 days.  I guess my immune system is not what it used to be.
  I don't think people love reading long lists of complaints on blogs, but please indulge me this once.  After this I will look on the bright side of all situations, and try to get back to my normal, upbeat self.  These last couple weeks have been really, really tough on me.  I think one of the hardest parts of being sick is not being able to just be sick at home.  The Family House has been amazing, and I am so grateful for it, but I am beyond ready to be back to my own home in Houston.  There are just so many things I miss right now.  We aren't allowed any food in our bedrooms, so everytime I have to eat, I get to go out in the common room with the shared kitchen.  This may not seem that annoying to most of us, but when you are disgusting in your pajamas, and just want to eat in bed, it's not ideal.  We don't have tv in our bedroom.  We have to watch in the common room as well.  Many of you would probably not be bothered by this, but I am not one of you.  While we do have wifi now, it goes VERY slowly, and it is in and out.  Also, we are sharing a laptop with 3 adults who have nothing to do.  Not ideal.  We also don't have our own bathroom.  We get to share with all our neighbors.  I really miss my master bath when I have my regularly scheduled middle of the night bathroom breaks.  Also, every shower we take, we get to pack up all of our stuff and lug it back and forth.  And, we are in a shared room with Kendall, me, Damon, Audrey, and my brother Mike.  Now, I am SO incredibly grateful to have my kids here with me, and for Mike for being here to help.  Sometimes you just wish it could be a little easier.  Most of the people staying here are in the hospital a lot of the day, and go home on weekends.  We are just here at the house ALL the time, so it makes me a little bit more homesick than I normally would be.
  Now that I have gotten some of that off my chest, I am ready to list some of the things I am truly grateful for.  I realize that most mothers, when they are this sick, do not have 2 other adults to help care for their 2 little kids.  Kendall and Mike have been awesome, and even though the kids are stuck watching tv most of the time, they are amazing little troopers.  They come bursting into the bedroom every couple hours to give me loves and hugs and just yell, "MOMMY!!"  I am so lucky to be able to have my babies here.  Kendall has gone to the store multiple times for prescriptions, food, cough drops, etc. to help get me better.  And the thing I am most grateful for right now is the fact that my little Kaitlyn has managed to make it to 33 weeks today.  I don't know what I would do if I had to have a c-section right now with my hacking cough.  But, I am SO glad she is staying put.  She has done amazingly well, and we can only hope things are still on track at Monday's dr. apt. 
  At the last appointment, my fluid levels were still high, I didn't look close to going into labor, and Kaitlyn seemed pretty good.  Her ventricles looked slightly bigger, but they are quick to caution us that when you are dealing with mm, it is very easy to have differences in measurements.  We feel pretty good about everything, and are just hopeful that she stays where she is for a few more weeks.
  So, here's to hoping I am feeling like a normal human being soon.  I can't wait to have clear nasal passages, and be able to get through a sentence without breaking into a nasty coughing fit.  Oh, the little things we appreciate...

Tuesday, September 8, 2009

Ditto

More of the same news after our appointments today:  everything is holding steady, ventricles at the same levels (fourth week in a row with no increase), no signs of labor.  All quite splendid.  It's hard to believe that this Thursday will mark eight weeks since the surgery; eight weeks from surgery to birth is about average for a MOMS baby.  She'll be 32 weeks along on Friday.  Today's ultrasound was more in-depth than our regular weekly ones; they did all of the measurements and estimate she's just a shade under 4 pounds now.  And we now have a tentative date set for her delivery, in the event that she beats the odds and stays put until 37 weeks:  they'll plan the c-section for October 16.   

Sunday, September 6, 2009

Happy Birthday to Audrey

Yesterday our little girly turned 2. We are baffled every day by how ridiculously cute she is. She says all kinds of silly things. Lately she's been saying "yes" a lot, having just learned how to pronounce the "s" at the end. She can pronounce Damon's name a little better, too; sounds like "Da-nun!" She actually is getting pretty good at communicating; now nearly everything she says has some discernible meaning to us. She has quite a fiery streak; Damon was much more mellow at her age. She loves playing "1-2-3" with Uncle Mike -- on three she gets launched into the air and lands on the bed, laughing hysterically. She loves the beach, too -- we went there last Wednesday with Aunt Liz, and Audrey would probably still be there now if she had her way. She loved standing there in the shallow water, yelling "One! Teew! Thwee!" at the ocean and then jumping when the waves came. She loves cartoons, and her repertoire of theme songs and characters from her DVDs and the dozens of shows on Noggin, PBS, etc. is skyrocketing. One day she was counting for us (to eleven, that's as far as she knows), and we thought, on a whim, to ask her if she could count in Spanish; she got up to cinco, no problem. (Thanks to Dora, of course.) She brings so much joy into our family, we love her SO much and hope she has a fantastic third year of her gleeful little life. Happy Birthday, Audrey!


Wednesday, September 2, 2009

Very Funny Video

So, my sister Liz has been in town, and some of you know she works for Teva shoes. Recently she coordinated the launch of this online video called, "The Naturist." It's a, "how not to survive in the wild," kind of guide. Very funny. Now, naturist can also mean nudist, so don't go searching for it on google by just that name. You have to search for, teva naturist together. Anyway, it is hilarious, and you should all check it out. Here is a link:

Huffington Post Contest

At the site I just posted, you can vote for the video in an online ad contest. They are currently in the #2 position behind a Brad Pitt commercial. Help us out and go vote for The Naturist!

Tuesday, September 1, 2009

Still on target

We got the same news yesterday as the two weeks prior: everything is holding steady, no increase in CSF, cervix closed, etc. We're quite pleased that our blog has been so boring lately; we trust y'all don't mind. It's now been about four weeks that Kaitlyn's ventricles have measured consistently at about 10 and 11 mm, which makes us positively giddy, more and more convinced that this surgery accomplished what we hoped.

Having Damon and Audrey here is such a morale boost. They do keep us very busy, much more so than at home given our tight living space (in addition to us and Mike, Shelly's sister Liz is visiting for a week as well), but it is well worth it, many times over.

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.

Tuesday, July 28, 2009

Happy Birthday Damon!

When Damon entered our lives 4 years ago, I never imagined that I wouldn't be around to ring in his 4th birthday. Even when we headed out here and I knew it was a possibility that I would miss the kids' birthdays, I didn't realize how hard that would be. Every night at midnight, I have to wake up to take medication, but this morning, I couldn't go back to sleep. I just kept thinking about how much I love my little guy and that I was going to miss seeing him open his presents and blow out the candles. Yeah, we're going to have a party for him when he comes, but I really wish I could give him a big hug right now and tell him, in person, what a great little boy he is.

Damon really is such a wonderful son. There are so many things I love about him. I could never name them all, but here are some of my favorites: Every time Kendall or I gets ready for the day and comes out of our bathroom, he will say, "You look beautiful mommy!" or, "You look handsome daddy!" It's enough to give you confidence all day long. He is not a shy little guy. He will come right up to someone he doesn't know and introduce himself. He is so full of energy and enthusiasm for everything he does. He is such a great older brother. He loves Audrey so much, and never wants her to have to go down for her naps. Sometimes he loves her so much, hugging her from behind and trying to get her to play with him, that she gets a little fed up with it and screams, "Da-nunh!" in an annoyed teenager voice. He is always gentle with her though. He loves when his daddy chases him around the house, and loves to play hide-and-seek with us. He is very cuddly, and throughout any given day he'll sometimes come up to me and give me a big hug and kiss and tell me, "You are the best mommy in the big, big world!" (Pronounced "wowode"). I can't imagine life without him, and I love him so much more than I can describe right now.

I hope my little guy has the most wonderful 4th birthday a boy can have, and I think he is definitely the best little boy in the big big world!

Monday, July 27, 2009

First check-up after checking out

Today we returned for the first time to the medical center since we checked out of the hospital last Tuesday. It was about five hours altogether, including an hour-long lunch break. In the morning Shelly had an ultrasound, then after lunch a BPP session (where they watched Kaitlyn's movement and then put on the baby monitors for twenty minutes to check her heart rate and measure contractions), and then an appointment with the OB. Everything looks just as it should. Kaitlyn still moves quite a bit, and kicked for us quite a few times on the monitor. No contractions, cervix looks great, no signs of imminent labor. And no worrisome build-up of spinal fluid. We basically heard everything we were hoping to hear. We'll do this every Monday, and hopefully each time we'll have good news (or no news, which is essentially the same thing) to share.

Shelly feels a little better each day, and is starting to feel up for venturing out a little bit. Yesterday was great weather, so I wheeled her around the Golden Gate Park for awhile. She walks around the Family House just fine, she just gets tired quickly and needs the wheelchair anytime we go outside. She's doing great, though. We really miss our kids; we'll have to do Damon's birthday tomorrow over the phone, but we'll have another party when they come to visit this weekend. We can't wait.

Saturday, July 25, 2009

Moving to the Family House

Well, we spent a few days here at the hotel, and now we are off to the Family House. It looks like the only room they can fit us in right now has two twin beds, but hopefully soon we'll be in a much bigger room. They said they have a room that has a queen bed and two twins, which will be perfect for visits from little kiddos. Our cell phones have good reception there, so you can call us on those.
This is Shelly again, and I'm feeling a little bit better every day. It will be great once I'm back to walking around without feeling like a 90 year old, but I'll take it. Kendall's been great. He's been my errand boy, getting all the food, medicine, and taking care of moving all our stuff.
We're doing well, besides a little boredom. So feel free to call, email, or even visit! I'm sure once I can get out of my room it will make a huge difference. The Family House apparently has communal living rooms, so even venturing out to one of those will be very refreshing. I'm sure just a change of pace will be nice too.
Anyway, we're off. I think the internet was down at the Family House yesterday, but they are working on getting that back up, so we'll be online again once they do. Thanks for all your awesome comments, I've been brought to tears a few times already just reading them. I'm sure part of that is that I am an emotional, pregnant, post-surgery, hormonal wreck... but it really is great to hear from friends and family.

Wednesday, July 22, 2009

In limbo

Kendall again. We're in a hotel now, the Stanyan Park Hotel about eight blocks from the hospital. Alas, we're again cut off from everyone -- our room is in the back corner and gets virtually no reception. So if you want to reach us, try 415-751-1000 and ask for room 108. We'll be here until there is an opening in the Family House, at which point we'll hopefully, at long last, have a good signal from AT&T.

Shelly's still doing ok. It was a rough night, adjusting to a non-adjustable bed (the one thing she misses about the hospital), but not as rough as some she had over the past week. We've got the alarm set so that we can drug her up every three hours. (She has seven bottles of various painkillers and other medicines to prevent contractions, fight infections, etc.) Otherwise, it's just more of the same, staying in bed, trying to bide our time watching tv while both mom and baby heal up.

Tuesday, July 21, 2009

We're outta here!

It looks like we get to go home (wherever home happens to be for us) today! We may be in a hotel for a while if the Family House is full. But, wherever we end up, I'm sure it will be loads better than having nurses come in to readjust the baby monitor straps half the night. They have done a fantastic job, but you can only take so much of being poked and prodded and having sleep inturrupted to get your blood pressure taken.

By the way, this is Shelly writing, which means that things are leaps and bounds better than they were a few days ago. It has been a pretty rough go of it after surgery. I have never felt so horrible in my life. Sunday was an especially good day for me, so we were feeling awesome that night. However, due to heartburn, a baby who would not stay on monitor, and nurses who needed her to, I got about 2 hours of sleep Sunday night. So, yesterday was a bit of a bump in the road to recovery. Also, I was switched from IV meds to vicodin, which I never imagined would not completely cover any pain need I had, but it really starts creeping back in by hour 5 or 6 without the medicine. So, I think the general difference between what we had and a normal C-section is, my scar is about an inch longer on each side, and the incision inside is quite a bit longer and vertical, because of the size of the lesion on little Kaitlyn's back. Also, because Kaitlyn is put back inside and very active (which is awesome), I was repeatedly kicked and my uterus protested to the whole process. Then I got to have lots of fun medicine that made me feel just terrific. They had me on 6 g of magnesium sulfate after the surgery, and slowly inched down to about 3.5 until the next morning (2 g is the typical dosage given to delay preterm labor). But by now I think I'm pretty much at a place where I feel like a normal lady that just had a c-section. The contractions have stopped, and other than a few kicks from my girl, I just have some serious c-section pain in between drugs. Super fun!

Honestly though, I am so much better than I was those first few days, that I'm sure I'll be feeling great in a few more. I just have to take it easy and let Kendall wait on me hand and foot. Actually, I have no idea what I would have done without him. The poor guy is 6'2 and has had to sleep in a reclining chair that is significantly shorter than that. He walks me to the bathroom, gets me my food, puts anti-itch lotion on my back, pretty much gets me whatever I need since I am bound to the bed, takes care of all the phone calls and blog postings, and is just generally the best husband in the whole world. I love him like crazy, and there is no one I could have done this with other than him.

We are really excited about the results of everything, and feel that Kaitlyn is in great hands here. It is kind of scary when we think about how early she might come (the average is 8 weeks after the surgery, which would be at 32 weeks for us), but I guess we just have to focus on each week at a time. I feel so attached to her already, and have really fallen in love with her feisty spirit. Everytime we have an ultrasound, her head is facing a new direction and she puts on a little show. I know it is frustrating for them, but we are just two proud parents watching those feet move around.

The really tough part has been missing our other two little chubby-cheeked children. If I didn't know that Damon and Audrey were having the TIME OF THEIR LIVES in southern Utah at grandma's house, it would make it so much harder. They each have a cousin their same age and gender living there, and Damon can't even be pulled away from the fun for much more than a quick, "I love you mama." We can't wait til we can see them, and love when all of you send the pictures you have taken of your time with them. We are so appreciative to everyone who watched them while we've been gone, and hope that you had fun with them at your house. There is so much missing when we can't see them, but we do know that they will be back to see us, and we'll all be together soon enough. Right now, Kaitlyn has to get through the next few months, and then we'll all be back in Houston as one big family of 5.

Again, to repeat what Kendall has been saying, we couldn't have gotten through all of this without each of your prayers, service, phone calls, comments, and wonderful friendships. We feel like the luckiest people in the world to have so many people that love us. Thanks to all of you, and maybe our next post will be from somewhere much more pleasant than the hospital.

Sunday, July 19, 2009

MUCH better

Today was fantastic. Shelly felt very well, got out of bed a few times, used the restroom on her own, ate normal food, didn't feel nauseous, pain was still there but usually tolerable, no contractions... a resounding success. She had been improving a little each day since the surgery, but today was quite a jump from yesterday. They removed the IV and the oxygen nose thingy. She's very conversational today as well, and had a few good phone calls. (If yesterday's post dissuaded any of you from calling, sorry; don't hesitate to give her a call tomorrow.) And Kaitlyn is still doing great too; she looked great on today's ultrasound. Everything seems to be on track for us getting discharged on Tuesday, probably.

Saturday, July 18, 2009

Third day's the charm (sort of)

Shelly's feeling a little better; still thoroughly exhausted and all drugged up, but a little less so. Today she managed to sit up for a few minutes and dangle her feet. Tomorrow's big goal will be standing up and walking a bit. She was also able to keep down some food. It wasn't much; she had a 70-calories-sized package of Cheerios, plus a few nibbles here and there of bread and crackers. She still felt nauseous at times, but it all stayed down. The painkillers are still working reasonably well; her pain is usually around 4 on a 1-10 scale. And the best part is that they aren't really detecting any contractions at all anymore.

Kaitlyn is still doing great. Moving all over the place, which is great for her, annoying for the nurses (who keep having to reposition the monitors tracking her heartbeat), and not as tough on Shelly as yesterday. They've done ultrasounds each day, and she looks great; still no buildup of spinal fluid, which is fantastic.

Thanks to everyone for your phone calls, texts, flowers, and comments on this blog. We really do appreciate the kind words; Shelly keeps wanting me read them to her. She still hasn't yet felt up to any phone calls because she gets wiped out so fast every time she tries to talk (although today she did manage to speak for a few minutes with Damon and Audrey). But if you want to try to call her, she might be feeling well enough tomorrow or the next day. Kendall will cover the mouthpiece, whisper your name to her, and she'll weigh how she's feeling against how close of a friend / family member you are; if you make the cut (don't be too upset if you don't; remember, her own kids didn't until today), you might get a minute or two out of her. By the way, our wireless in our room is terrible; our land line here (at least until we're discharged, hopefully on Tuesday or Wednesday) is 415-514-5487.

Friday, July 17, 2009

Slow and steady...

Well, there's still a ways to go, but by the end of today she's finally starting to feel a little better. The big news is that the contractions finally have slowed down to about 2 or 3 per hour, so she is no longer on the magnesium sulfate. Many of you moms out there might remember that drug with something less than fondness (it's the stuff that contributed most significantly to Shelly's overall yuckiness yesterday). Shelly had to get about twice the dosage they normally give, since her contractions were so frequent and everyone was VERY intent on preventing her from going into labor (she's still only at 24 weeks today). But this morning they had slowed enough to the point that the docs felt ok with dialing it back, and by mid-afternoon she was off of it altogether. Now she's on some other drugs to prevent contractions, ones with less severe side effects.

But as far as pain goes, much of the day was like yesterday. She continued to have the same issues with the epidural -- her left side completely numb, and her right side not at all. Sad coincidence: one of the surgeons, who popped in to check up on her, pointed out that her right side was more seriously affected by the surgery. The incision in her skin is symmetrical, horizontal like a regular c-section (but wider), but the incision in her uterus was vertical and placed several inches over to the right. Just bad luck that the epidural wasn't reaching those nerves. And although the pain from the contractions was less frequent, Kaitlyn decided to compensate by wiggling around all day long, which hurts just as much. (But of course Shelly and everyone else are delighted that Kaitlyn is so active after such a big surgery; indicates she's recovering well, and also helps us stay optimistic about her mobility in her legs.) They've also had to do an ultrasound, a fetal echo, and constantly reposition the baby monitors, all of which involved putting painful pressure on the incision. By the afternoon they decided to just scrap the epidural altogether and try out various painkillers through her IV, and they've helped keep the pain more tolerable. She still hasn't been able to eat -- well, she did eat some (about a tenth as much as Audrey normally eats in a meal), but wasn't able to keep it down. But on the whole, things are definitely improving.

So that's the story. Kaitlyn's doing great, having a grand old time elbowing (and hopefully kicking?) her mommy's sore spots. And Shelly is healing too. Tomorrow, with no magnesium and better pain meds, she'll hopefully be able to eat and perhaps talk on the phone (first call, of course, would likely be with Damon). Will keep you posted. Love you all.
--K

Thursday, July 16, 2009

The promised details

Shelly has finally been able to fall asleep, so now's my chance to try to sum up our day for everyone. Last night we checked in around 8, and they poked and prodded Shelly for a couple of hours. Took awhile to get the IV in, plus drawing blood, a TB test, and dozen other random things. We were able to get a decent night of sleep in, though.

Our morning started at 5:30. They put an epidural in her back (without meds yet, just so they could start it flowing before she woke up), got the various meds ready to go in the IV and epidural, got her bed all ready to go. They wheeled her down to the OR prep room, where we again met lots of the people who would be in the room (there were probably at least 15). They made her drink something horrid and gave her some more meds; then it was time for me to say goodbye, and they took her in shortly after 7. I went upstairs, twiddled my thumbs, tried to trick myself into being interested in watching senators grill Sotomayor, and waited.

The first news came at around 10:30, when Dr. Gupta, the neurosurgeon whose part in the process was being in charge of closing Kaitlyn's lesion, came up to my room after he was done (and while the other surgeons were still working on putting her back in and closing up Shelly). He said everything was going very smoothly. The lesion was flat, not bulging outward like most myelomeningoceles, but it was large, as we knew beforehand. Not only was it long, stretching from L2 to S1, but it was also somewhat wide, oval in shape. Thus, it was not possible to simply stretch her skin together, so they instead sewed her skin to a synthetic patch to close the opening. (This issue does happen sometimes in these surgeries.) Dr. Gupta explained that the patch was now about the size of a quarter, and as Kaitlyn grows, her skin will probably grow naturally over the patch by the time she is delivered. And even if not, it will still be ok -- she (and her back, and her skin) will grow, but the patch will not; so the patch will be a much smaller area of her back, proportionally, by the time she is born. It would then be a very simple procedure to remove the patch and sew her skin together. That will not be a high-priority issue, and could be done in the first week or two after she's born (and she may not need it anyway).

So Kaitlyn appears to be fine, surgery a success, and there is not much else we can do but wait until she is born. I do want to point out, in case we haven't clarified already, that we fully understand that we will probably never really know for sure whether this surgery made a difference for her. Even when this clinical trial concludes, and they publish results saying whether or not these surgeries do result in average net benefits, we won't have a clear idea whether or not it made a difference in Kaitlyn's case. That's the nature of a clinical trial; they obviously hope it can make a difference, but there's not concrete data yet to support that intuition, and we are the guinea pigs. We understand that. But we do feel like everything that has happened to us over the past few weeks and months has led directly to us being where we are now. It seriously felt so inevitable, even when we reached the randomization point -- we knew it was 50-50, and were desperately trying to convince ourselves that either outcome was equally likely, but we still both felt that we would each be pretty shocked if we were not assigned to the prenatal group. It really has seemed like a collision course towards this surgery, the whole time. And I know our journey is far from over, but each step life takes us lately seems to be a accompanied by a confirmation that the previous day's events were all carefully planned out by our Father in Heaven. We feel so incredibly blessed.

Now, to the hard part -- the rest of the day, which was not kind to Shelly. (She's ok, but utterly miserable.) She was finally wheeled up, accompanied by no less than 10 or so doctors and nurses, who brought her into our room and set about hooking up meds and breathing tubes and baby monitors and doing a million other frenzied things that I can't begin to catalogue. She was very hot when she woke up, a side effect of the drugs they were giving her to stop contractions, and it took a few hours of directly facing fans on her on high power for her to finally cool down. The rest of the day was a constant battle against those darn contractions. Basically, during this kind of surgery, the uterus gets pretty upset about the situation, so she's had contractions all day, ranging from one to five minutes apart; it seems like they are gradually slowing down, but they really can't reduce the heavy meds until they stop completely. The meds are stronger than just the regular stuff one gets after a typical surgery, and she's needed higher doses than usual in order to try to quell the contractions, so she's felt pretty awful -- hot, sweaty, exhausted, dizzy, groggy, light-averse, tingly, nauseous, dry heaving... you name it. And that was before the epidural stopped working; for some reason it wasn't reaching her right side, and the contractions started huring quite a bit as well. They were particularly painful along the site of the incision, and Kaitlyn's moving around didn't help either. They tried repositioning the epidural catheter, then later decided to redo it completely, and she laid on her side to try to get the drugs to drain that direction... finally, after about three or four hours, they were finally able to get her pain to subside.

Anyway, I hope she's not upset later on that I posted all of this, but I really do find it heroic, and wanted to let everyone know how proud I am of her. Shelly said beforehand that she wanted to do this in part because Kaitlyn will probably have to go through many surgeries throughout her life, and she wanted to at least show she was willing to do one for her, and couldn't bear to live with herself if she were too chicken to go through with it. But of course, anyone who knows Shelly knows that her motives were much more altruistic than that. (Plus, she will always have this to hang over Kaitlyn's head: "I had to give birth to you twice, and the time in between was even harder!") It's truly a remarkable thing, what a mother will endure for her child she's never met, and I don't want to disparage what other moms go through, but it's pretty rare that anyone ever has to go through a c-section and then immediately put the baby back inside. And yet, despite enduring the most miserable day of her life (and likely facing at least a few more to come), I know she wouldn't even think twice if she had to do it all again for Kaitlyn.

Anyway, enough martyrizing of Shelly. She is healthy and healing. Hopefully, tomorrow or the next day, she'll feel up to phone calls, but we'll play it by ear. We love you all so much. --K