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

16 comments:

  1. I love you guys. Shelly, you're amazing! And Kendall, you're amazing too =) I hope that Shelly and Kaitlyn recover well and that everything goes as smoothly as possible from here on out. I can only imagine how scary it is, being part of a clinical trial, but I know you've followed the Lord and He has been directing your footsteps. He knows what you need. I'm praying for you!

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  2. Kendall,
    Not sure if you remember me, but I'm Brianne's friend Amber. Mark's brother and sister in law's baby Elizabeth Rose was born June 22nd with spina bifida...it was a long battle for both parents and baby Lizzy, but she had surgery on the opening in her back the day after she was born and was able to go home a week later. She's doing very well and hasn't had to have a shunt put in or anything like that. So many people were praying for her and I'm sure a ton are praying for Kaitlyn as well, the power of prayer is truly amazing and no matter what I'm sure she will have a great life because she has a great family. :) We're praying for you guys here in Arizona and I'm sure it's hard, but my mom always says God gives the special babies to the special

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  3. parents. I hope Shelly feels better. :)

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  4. I'm so very humbled to have two people like you and Shelly in my family. Seriously, it's awesome. I've always looked up to the both of you (you literally, Shelly figuratively...she's kinda like my big sister, even though technically I'm a couple months older), and watching you two go through this trial, trusting in the Lord and knowing that His will be done, is inspiring, really and truly.

    Shelly, you are my hero. Going through this for Kaitlyn is incredible, and I'm so grateful for the sacrifices you are willing to make for your children. And Kendall, you're pretty cool too =P

    You will continue to be in our prayers! Love you!

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  5. Well, Pippi sat down at the table to write you guys a note yesterday. Here it is: Dear Burrs, I hope you are comfortable. I know all about babies, and they are hard work.

    I thought comfortable was such an odd hope, but I now reiterate her wishes for you. I hope you are comfortable. What you guys just did took a lot of courage. Bring on the miracles!

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  6. I agree with Brianne, I think you are BOTH amazing. Hospitals can do amazing things, but let's face it, when you're stuck there, it's awful. I hope that Shelly is more comfortable today and that the contractions slow down (and STOP!) so that you can check out of the hospital soon. We love you so much and have been praying for you and the kids several times a day. Thanks for the updates.

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  7. We love you all and want you to know we are praying in Florida, as well. Thanks for keeping us updated. You are all amazing. Hugs!

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  8. Phew! It's very comforting to read the update!
    We're so happy that you are able to see the Lord's hand in all of this and are able to feel and accept his love and guidence. Not all are able to take these experiences and allow them to strengthen and humble them. It is a blessing to know you guys and through your own struggles, I too feel strengthened and closer to Our Father in Heaven.
    You guys are both heroic and even more, I see your example of Charity, meaning that pure love of Our Savior.
    We will continue to pray for you and your little munchkins that cannot be with you right now.
    We love you guys!

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  9. What an amazing post...I totally balled my eyes out when you talked about how amazing Shelly is. I really wish we could do more for you other than keep you in our thoughts and prayers. You are such special parents to this sweet little girl (as well as your monkeys back home). We love you and know that the Lord is blessing you and will continue to bless you.

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  10. What an amazing few days your family has gone through. I hope Shelly is getting everything she needs, she deserves it! We are praying for your family.

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  11. So glad to hear it went okay! Hopefully this will make a wonderful difference in her life. I'm sure she will be a special little girl and bring much joy to your family. You're in our prayers.

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  12. Well, we've been on the phone alot, but I want to go on record here and post that we are SO tremendously proud and honored to be your parents. You both have been valiant and brave through unchartered waters, having faith and strength beyond heroic. We feel the Lord's guiding Hand in our lives and acknowledge His blessing our family with this little cherub Kaitlyn. Shelly, get well. We pray the drugs do their job, and that your body settles down & accepts this new situation quickly, that the pain subsides, and that Kaitlyn thrives. We love you more than words can say.
    ~Mom & Dad in CA

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  13. I am so AMAZED! What a crazy experience to have to go through. Shelly you are SO brave for enduring all of this! I am strengthened by the faith that the two of you have shown. You are truly amazing people and we are praying for you and baby Kaitlin here in Utah!

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  14. What a beautiful post. I am so glad to hear the surgery went well and I wish there was more I could do for you guys right now. I am sure Kaitlin is going to be such a light in your home that you won't even remember all you had to go through to get her here!

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  15. YAYYY! So happy to hear that things are moving along and that everything seemed to go well. I hope Shelly is feeling better today.
    You guys are so great and such ROCKS!! We are thinking of you...

    Mistie Scott family

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  16. Our thoughts and prayers are with you. xoxo

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