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.