Ok, so I am going to write my post, and later, I will do a post just with pix. I PROMISE!!!
So much has happened since my post in November! Of course the kids are all growing, and doing well! All three older kids had straight A's at the end of the semester, which made my heart sing! I am so proud of my kids and how hard they work at school. They all love school, and it really comes fairly easy to them. I struggled SO bad in school when I was young, so to see them thrive means so much to me!!
Now to Kenasyn's update. (cause I know that's why you all are REALLY here, which is ok, cause that's what I mostly blog about anyways)
Kena is 8 months old, and I seriously can't believe she has been with us that long! It feels like just yesterday we brought her home from the hospital. We are so completely in love with her! She is such a character! She makes us laugh and cry. She brings us true joy and heartache. She is such a fighter. When she was first born, we were so unsure what life was going to bring for her, and rightly so... us as parents. Most of her first diagnosis are the same, but some have changed. Here is her current list of the different conditions she has:
Tibial Hemimelia (Left Leg)
Fibular Hemimelia (Right Leg - She has complete absence of fibula)
Developmental Hip Dysplasia (Left Hip)
Sacral Agenisis
Severe Scoliosis
Anorectal Malformation with a Vaginal Fistula
Rotated Right Kidney
Tethered Spinal Cord
Fused Ribs
Fused Spinal Vertebrae
Yes, I know, that is quite the list. Many times I think about all of these things, and it literally brings me to tears! But this girl is absolutely amazing! We were told by her orthopedic surgeon and also her physical therapist that Kenasyn would probably never crawl, that she would just sit on her bottom and scoot around until she got her prosthetic. But this girl is everywhere! She army crawls with the best of em. They also said that because of her 3 major abdomen surgeries, she was likely to not sit or roll till she was nearly a year old. But she sits and rolls with the best of em as well! Nothing is going to hold this girl back!
SOOO, let me back up a few months. Just a few days after my last post, Kenasyn went in for her 4th surgery. It is called a ostomy takedown. To the rest of us, it a colostomy reversal. We had to arrive a day early (which happened to be Cayge's birthday, so I was heartbroken that I had to miss his entire birthday) for a bowel clean out. Basically, they started her IV, then put a ng (nasogastric) feeding tube down her nose into her stomach. It is a chemical that basically gives you explosive diarrhea. And this one time, I was grateful that she had a colostomy bag, and not just a diaper! When they gave her the IV, they also did a blood draw to test and make sure that she was healthy for surgery. And to my dismay, she was not. Her white blood cell count was elevated, meaning she had an infection of some sort. She was already on antibiotics for a UTI/kidney infection, so we weren't really sure what was causing the high white blood cell count. So they gave her a higher dose of antibiotics, and do a blood draw again in the morning and just hope that the count went down over night. So they did a blood draw first thing in the morning... and by first thing, I mean 4 in the morning!!! They told me it would take about an hour for the results. (In the mean time, Rayce and his Dad were headed down to Salt Lake to join us for Kena's surgery) After the hour past, the lab gal came in again and said that the 1st blood draw didn't work, so they had to poke her again. I wasn't the happiest of campers! And I really didn't want Rayce to drive all the way down, just to have her not have surgery that day. So, we finally got the test results back and her White Blood Cell count had went up enough to clear her for surgery. Rayce and his dad arrived at the hospital about 10 minutes before we went down to the OR. Let me tell you, handing your tiny baby off to a stranger that's going to put a tube down her throat and tape her eyes shut never feels good. I was so anxious for her to get rid of her colostomy, but I HATED handing her off, knowing that she was going to get cut open. It broke my heart, and I sat in the hallway to the OR and bawled like a damn baby. (it is bringing tears to my eyes just thinking about how bad I hate doing it! It sucks!!!) But, we have the most AMAZING surgeon for Kenasyn. He has wonderful bedside manners, he always keeps us informed, and he treats Kenasyn as though she is his daughter. We love him, and are so eternally grateful for what he has done for Kenasyn! He has done all 4 of her bowel/anal surgeries, and all things considered, we are pleased with what he has done!! (If anyone ever needs a referral to an amazing G.I. doc at Primary's let me know, cause he's fantastic!)
Even though it felt like eternity, Kenasyn's doc came out in about 3 hours to let us know that he was finished, and everything went very smoothly. He was pleased with everything. And it took everything in me to not give him a great big hug!!
They only let one parent back in the post-op area, so of course I went back (you couldn't NOT let me go back if you handcuffed me to a 2-ton cement brick!!!) It is always SO sad when I go back and see my baby laying there in her metal crib trying to wake up from anesthesia. But I got to hold her right off the bat, and of course when the nurse took the blanket off for me to pick her up, I just started crying at her 'no longer' colostomy site! The nurse said that the incision was a lot larger than normal, but it was okay. And I had to tell her that none of that mattered to me, the fact that she didn't have some stupid back stuck to her body was all I cared about. I had my baby back. Kenasyn had that stupid colostomy for 5 long months. She was always a baby with a colostomy. But now she was just a baby! She had nothing extra connected, and it was so nice! And her scar from surgery is quite large. 4 inches to be exact, but the doc had to pull out 3 feet of bowel to make sure it was all healthy, plus he had to flush it all. He also had to connect her stoma (the colostomy) with her mucus fistula (her anus), and since he had to pull out so much bowel, it was just easier and faster to connect the two sites. But like I said, I don't care. She might care when she gets older and wants to wear a bikini, but hey, maybe that will deter her from wearing them (at least her dad is hoping for that!).
In order for her internal sutures to heal, they had to put an Anderson Suction tube down her nose (basically the same thing as a ng tube) to suction all of the stomach bile that her body was producing. Basically, the reason they do this is because if the stomach bile (acid) came into contact with the internal stitches, they would just disintegrate, which means she would empty her fecal matter into her abdominal cavity, and therefore would have to go back for emergency surgery. Kenasyn went 6 straight days without eating. It is heartbreaking to just watch your baby waste away. But once she started eating, she put all the weight right back on. We got to leave the hospital in 7 days, and I was so proud of Kenasyn. She is such a trooper. And because she went 5 months with no poo on her bottom in dirty diapers, her skin had major breakdown. I had to make homemade wipes, because store-bought wipes either have alcohol or citric acid in them. When your skin has open sores and is bleeding, those two ingredients is the last thing you want on it!! I had to be so delicate when I changed her diaper for over a month from the skin break down. If I wiped too hard, her skin would literally wipe off, and she would bleed something terrible. But all in all, I am SO SO SO happy to change her poopy diapers! I never realized that not being able to change your baby's poopy diapers would be such a bad thing!
Three weeks after Kenasyn's surgery, we met with her orthopedic surgeon at Shriner's. That is when we found out that Kena also has Fibular Hemimelia of the right leg. She has complete absence of her fibula. They decided the best course of action at this time for her right leg, was to do serial casting. She has had 5 total casts, and they have been progressively turning her foot (that previously looked clubbed) so that it faces the right direction. On January 9th, the docs preformed a Tenodomy (the lengthening of her Achilles tendon) on Kenasyn, to give her more flexibility and extension in her right foot. She did fantastic, and I am pleased to say, that she only has 3 more days of wearing this cast! Then she will be placed in a special brace/boot to hold her foot in place. This kid is such a trooper.
As of now, Kena has two more surgeries scheduled before she turns a year old. If you've done the math, that is a total of 7 surgeries in under 1 year!!! I don't know anyone that can do so many major surgeries, and bounce back like nothing has happened!! She is seriously so strong! My little Warrior Baby!! The next two surgeries are her hip reduction surgery (basically placing her dislocated hip into socket) and then her amputation.
I love this girl so much! (as I do my other kiddos too!) Some days I am in awe at what she can do with her little battered body. She never EVER acts like she is in pain, and is an all around happy baby! On the most part, I feel like I have it together too. In so many ways, she is just like any other baby. But she's a fighter, and I can guarantee that this girl is going to change the world someday! She has already changed mine, her dads, her brother and sisters, and just about everybody that meets her!
But I have to admit, that it isn't always sunshine and butterflies! The other day, there was a new baby born in the family. And as much as my heart was filled with joy for this family, my heart ached for Kenasyn. I cried all day. Not one part of me was sad about this baby, or the family, or ANYTHING like that. But I was sad for Kena. I just want so much more for her than her poor body has to offer. She has already been through so much. When I heard the news of this little one's birth, my heart immediately started to hurt. I thought back to the day Kenasyn was born, and how all of the tears I cried that day weren't out of joy, they were out of fear. I was so terrified of all of the unknowns about what had happened to her body during development. The day Kena was born was seriously one of the scariest days of my life. But this day I cried because all I want for her is to be healthy. I don't want people to look at her because she is different. I don't want doctor after doctor to look at her and poke at her and cut at her. I want her whole. I want my baby to be just like my other four babies. I want so much more for her!!! But having said all of this, I know she will be more than I could ever imagine! She proves it to me on a daily basis! All of her little mile stones proves to me that she doesn't need a "normal" body, that she can do everything everyone else does, plus more, with the one she has. People say to me all the time: I don't know how you do it. And my response is "do what? I am just doing what any mother would do for any of her children." They also say: she is so lucky to have you as a mom. My response to that? "No, I am lucky to have her!!!!" And it's the truth! Kena could have thousands of moms that take as good of care of her as I do, but she is mine. She has blessed my life in SO many ways! Too many ways to list! She teaches me lessons on a daily basis, as she does with so many people around us!
Because of Kenasyn, I am a walking dictionary of all of her conditions. Sometimes when people ask me what she has (like it's really one thing), I don't think they are ever prepared for the lengthy speech I give them about the multitude of issues that plagues her body. But as any mom of a child with any kind of "condition", you become an expert! You research, and research, and research until your fingers are numb from typing and your mind is numb from the answers you didn't want to know. So, to save you from me telling you about each one of them, I have included links that give you an over view of most of the conditions she has.
Tibial Hemimelia: http://www.oandp.org/publications/jop/2006/2006-6.asp
Fibular Hemimelia: http://en.wikipedia.org/wiki/Fibular_hemimelia (I realize how unreliable wikipedia is, but this actually gives a very good description of the condition)
Developmental Hip Dysplasia: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001966/
Sacral Agenisis: http://www.rightdiagnosis.com/s/sacral_agenesis/intro.htm
Tethered Spinal Cord: http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm
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