Wednesday, August 1, 2012

Kena Update

Man, a lot has happened since I last updated this ol' blog!!  Summer is nearly over, the kids are growing like weeds, and my grass is dying in this dang heat!!  So I'd imagine most of you are here for an update on Kenasyn.  She is doing really good!
Just cause I love blogs with pictures, here are a few pictures I took of her when she was 22 days old.  I wish they were edited, but I can't pin Rayce down long enough to teach me how, so here they are, and i honestly think they are as cute as ever!!!  I love my Kena-bug!!!!





(Ivory sure loves her baby sister!!!!)




KENASYN'S SURGERY

Kenasyn went for surgery to receive a colostomy at 24 days old at Primary Children's Medical Center.  We were sitting in the waiting room with all of the other kids & parents waiting to be called back for surgery.  I was sitting there completely freaking out in my head.  Everyone else seemed so calm, just waiting their turn.  Of course it didn't take me long for the tears to start flowing.  I asked Rayce how can all of these parents seem so composed?  I just wanted to take my baby back home.  I wanted to wake up from this nightmare.  I wanted to open my eyes and see Kenasyn's leg straight and "normal".  I wanted to change her diaper and have everything look like it's supposed.  I didn't want to have to hand my baby to a complete stranger and know that she wouldn't be the same when she returned.  I was terrified for my itty bity princess.  When we walked her down the hall and handed her to the Anesthesiologist, I nearly collapsed because I was sobbing so hard.  She was perfect to me, and I just wanted her back in my arms.
Before her "surgery" started, once she was sedated, a urologist scoped her bladder and vagina to make sure that everything was structurally how it was supposed to be.  And luckily it was!  They told us that the surgery would take up to 3 hours, but in a mere hour and a half, her surgeon was done and came to tell us that everything went perfect, and she was in recovery.  It took about another 45 minutes before they let me back to hold her.  It was the saddest thing, too.  Her already raspy voice was extremely horse from having the breathing tube placed while she was out.  I got there when they were giving her a dose of pain meds.  Unfortunately, they accidentally double dosed her, but all it did was take the edge off her pain, so she was in a lot of pain for the next 8 hours before they could finally give her morphine.  But all things considered, she did wonderfully in her surgery, and they were very happy with the results.
Daddy holding Kenasyn shortly after her surgery.

We couldn't keep her O2 stats up from the original pain meds they gave her, so she was on blow-by oxygen for 6 hours after surgery.
Unfortunately, Rayce had to leave that afternoon to return to Idaho to take care of the other 4 kids.
She seems so tiny in that big hospital bed!!

Just when I thought everything was starting to get better, they got worse :(  The "wound team" came in the next morning to teach me how to take care of Kenasyn's colostomy, and when they removed the bag, we were all shocked at what we saw.  Kenasyn's original procedure was called a loop ostomy.  But the problem she faced was because her anus is SO small, all of her bowels were swollen, so when the pressure was relieved from there, the swelling started to go down.  And when that happened, the lower part of her colon prolapsed out of her incision. (pic below)


So, once this was discovered, her surgeon was paged and he rescheduled her surgery to fix this right away.  And she was wheeled back to surgery 35 minutes later.  I was terrified.  I sat there in the waiting room by myself and tried to keep myself from sobbing.  Her surgery didn't last long, and the doc came and said that everything went really good, that they changed her colostomy to what is called a Double-barreled ostomy.  So she has two incisions.  It was so nerve racking to listen to all of this, and just hope that my little angel was okay.  I just wanted to hold her in my arms at that moment.  Her doc said that she would be ready to go back up to her room soon, and that they would call me to go to recovery with her.  TWO HOURS LATER they finally let me back there.  They couldn't get her to wake up from her anesthesia, and she still had the breathing tube placed.  They normally don't let parents back to recovery when the patient is like this, but the waiting room people could clearly see me in distress (crying in the corner cause I couldn't get answers from anyone!), and so they let me back.  It was heartbreaking to see my limp little baby, laying on a bed with a breathing tube in her mouth.  I once again, started crying.



The anesthesiologist finally came and checked on her, and decided her stats were high enough that they could pull the tube.  (trust me, a parent should NEVER watch this happen to their child!!!)  Her O2 stats stayed level, and soon after she was taken back up to her room.


(She had an allergic reaction to the plastic-y tape they use, and she broke out with a rash across her eyes)

Slightly sedated, but calmly sleeping :)

After a bath.  Check out that crazy hair!!!

Kenasyn was at Primary's for 6 days.  We were so excited to have her home.  It was such a hard thing to watch my princess go through all this, and the hardest part of it all, is I know that this is just the beginning for her.  She can have up to 6 more surgeries before she even turns 1! But we are strong and we take it day by day.  It hasn't helped that she is really colic-y. But she is beautiful and we love her.  She sleeps 7-9 hours at a time at night, so it helps me re cooperate for each day of non-stop crying!


Shortly after our return from the hospital, we adopted a kitten from my sister, Genice.  He is aptly named Cheddar Cheese Bird.  He has been a lot of fun! (at least to the kids anyways)  He aimlessly wanders around the house meowing very loudly when the older 3 kids are gone.  He has a very funny personality, and my kids really have enjoyed having him here.


This summer the kids did swimming lessons.  I took a Mom & Tot class with Ivory, but this day, I was home with the flu, so Daddy was my sub.  (Which worked good for me, cause I really don't want to post pix of me in a swimming suit!!!  YIKES!)




(Shylee looking at her "boyfriend" Drake  {he is out of the pic, not the boy next to her})


Icelynn is ALWAYS posing for the camera.







Ivory Loved every second of it, and wanted to spend her whole time jumping off the edge!  She is fearless!!

Cayge and his beautiful blue eyes




Kena has physical therapy twice a month.  So right now we are working on tummy time and holding up our head.


This past weekend we went and stayed in a cabin at Island Park.  Kena kind of struggled with all the attention she got.  So here she is enjoying some alone time (with daddy right next to her) sitting up watching everyone run around.  

This is just this morning.  You can clearly see her colostomy bag, and her mucus fistula (the part that they made the new incision for) right at the edge of her diaper.. it's the little pink spot.  She is slowly growing.  She is a whopping 8 pounds 10 ounces.  She is on the negative 1%-ile.  Which is extremely surprising to me cause she wants to nurse ALL the time!  But she is happy and healthy.


Sunday, June 3, 2012

Kenasyn Rayne's Birth Story

Okay, so it's been over three weeks, I guess it's time to tell Miss Kenasyn Rayne's birth story.  

As most of you know from reading past posts, our we knew that our little Kena was going to be born with some issues.  We really didn't know the extent of the issues, other than she had a shortened limb, a club foot, and possible spina bifida.  Little did we know...
I had been having ultrasounds and non-stress tests every Tuesday and Thursday for what seemed like forever.  And as far as we could tell, she was growing right on target.  So, my doctor took pity on me and had me scheduled to be induced on Monday, May 14th.  But my body had planned otherwise.  I woke up Saturday the 12th, with terrible back pain.  I just assumed that I had stayed in one position to long, and my muscles were tight.  So I adjusted, and fell back to sleep, only to wake up again with the same pain.  This time as I was trying to relax and fall back to sleep, I got a shooting pain in both my back and my lower abdomen.  I knew exactly what this pain was.  But I tried to sleep through it again, thinking it was just braxton hicks, and that I was just getting myself worked up over nothing.  But of course I couldn't sleep, as the excitement kicked in thinking that my baby was going to be born this day!!!  So after about 4 or 5 more contractions, I decided to get up and tidy up my house, and either see if these contractions would get stronger with movement, or if they would die down.  So at 5 o'clock, I decided to wash the pans in the sink from the night before, and do a few quick loads of laundry.  By 6 o'clock, they were getting to be about 4 minutes apart, but not lasting very long, nor were they very strong.  So I then decided to go for a walk.  And if anyone knows where I live, there is at least a stretch of 2 miles where I can see my house.  I knew Rayce couldn't come with me because he couldn't just leave the other kids alone, plus I knew that if I REALLY needed him, he was a phone call away, and could get to me in the car within 1 minute.  So I headed out, and I was so scatter brained with excitement that being in labor that I walked out the door with my slippers on.  (and I didn't realize it till I was about 200 yards from the house)  I decided to call my Grandma to have on call to come and watch the kids, since it was only 6 in the morning.  By the time I headed back, after walking about 1 mile, I decided that this WAS the real deal.  I called Rayce (and of course my luck, he didn't wake up cause he was in such a deep sleep) to tell him to get out of bed and get ready, cause we were going to be going to the hospital.  
My contractions at this point were about 3 minutes apart, and really strong, but only lasting about 20 seconds.  Now seeing that this was my 5th baby, I knew that the closeness of the contractions were not to be messed with, but the fact that they were so short had me questioning my decision to go in.  
But not to long after I got home, my grandma showed up, so I headed to the shower.  I turned the water on to nearly as hot as I could stand it and just let it run on my belly.  This did 2 things, relieved alot of the pain that I was feeling, but after getting out, the contractions seemed to double in intensity.  It took me a while to finish packing my bag, and doing last minute things around the house (as Rayce and my Grandma are trying to hurry me to the hospital.)  
We arrived at EIRMC at 8 o'clock.  (Luckily I had called, so they knew when I arrived that I was a high risk patient) The nurse came in to get me all set up, and at the same time, the NICU nurse came in to talk to us about all we knew with Kena.  Their biggest concern (and ours as well) was that her heart wouldn't tollerate labor because of her 2-vessel umbilical cord.  They started monitoring her right away, and once I was in my gorgeous hospital gown, they checked my dilation.  And to my surprise, I was at a 4!  By 9 o'clock, I had my epidural, and was comfortably waiting for my little angel to arrive.  
My Doc came and broke my water and checked me at noonish, and said that I was a 6.  I told her not to go far, because I usually go really fast once I pass a 5.  And with a few visitors in our room, at 12:30ish, I felt her start down the birth canal, and I knew she was on her way!!!  The nurse came in and confirmed what I had said, and paged the doctor and the NICU nurses.  
There seemed to be a break in all the excitement as we were waiting for the doctor to arrive, and it donned on me how terrified I was.  Not for the pain of delivery (I'd been there before, with no pain meds whatsoever).  I was instantly hit with the fear of what my poor baby girl was going to have to go through, in just a matter of minutes.  Here she sat for 8 months, cosy and warm.  Protected from prodding fingers, and lights, and instruments.  I just laid there so helpless, so excited for my angel to be in my arms, but at the same time, I wanted her to stay in there.  I wanted her to not cry, and be hurt by people that didn't love her like I did.  I wanted her to be safe and happy.   
But like it or not, she was headed out... literally, and my sister Genice had to run and get the nurses, cause at that point, I thought that Rayce was going to have to catch her.  And within a few minutes, everything, and everyone was ready to do their job, and as easy as clouds floating in the sky, Kenasyn Rayne Bird joined our family at 12:42 pm.  (Literally, it was that easy.  Doc told me not to push, so I just let my body do what it needed to do, and she delivered herself)  One of my biggest stresses with delivery, was if I was going to be able to have my little one placed on my chest right away, or if they would just take her. But I was lucky and my Doc laid her on my chest and I got to hold my little angel.  She was screaming with all her might, and I was crying with all of mine.  She was perfect, and beautiful, and misshapen, and covered in blood and goop, but I didn't care.  She was mine, and in my arms.  But that didn't last long, they took her over to the warmer and started cleaning her off.  They were really concerned, and had her over there for quite some time.  I knew something was wrong when Rayce was pacing (and had tears in his eyes) and my sister Genice also had a look of worry on her face too.  I finally asked if I could hold her before they wheeled me away to surgery.  They said that they had some concerns, and brought her over and showed me her bottom.  I could clearly see something was wrong, but I couldn't really tell what.  The way they had her positioned, I couldn't tell what they were showing me, and of course, they wouldn't say.  They just said that they were concerned. But they handed her to me, and everything else in the room disappeared.  I just held my baby and wept.  I wept with joy, and I wept with fear.  I knew that there was major problems, problems we didn't anticipate, but I didn't care in that moment.  I knew she was healthy enough for me to hold her, and for that moment in time, that's all I cared about.  I didn't want this moment to end, but the anesthesiologist came in and told me I had to hand her to Rayce, he had to up my pain meds for surgery.  And before I could think, she was out of my arms and I was headed out the door.  And as I lay in the operating room, I just laid there and cried.  I wanted my baby to be okay, and I wanted her in my arms.  
Luckily for me, time went by quite quickly while I was getting my tubes tied.  I really thought that I had only been in there for 20 minutes.  When the nurse wheeled me to recovery, I asked her to make sure that they weren't feeding Kenasyn, as I wanted to nurse her.  She called down to the nursery, and informed me that they said that I possibly wouldn't be allowed to feed her.  She couldn't (or wouldn't) tell me why, but I knew deep down that that was a really bad deal.  Something was terribly wrong if I wasn't going to be allowed to nurse her.  The nurse left the room for a minute, and all emotions started streaming down my cheeks.  Genice and my Dad came in to see me, and they had panic all over their faces.  I asked them what was wrong, and they said that I had been in surgery for over an hour and a half (and we were told it would only take 30 minutes).  They hadn't been told anything about me, and they hadn't been allowed back to talk to Rayce or see Kenasyn.  As I laid there with them by my side, I realized how lucky I was.  That they were there for me, when I really needed them.  Rayce came in for a few minutes, but I sent him back to the nursery, I needed him with our Angel.  After my allotted time in recovery, they wheeled me to the nursery, and I was so relieved to see our beloved Dr. Christensen there looking Kena over.  We knew that He could take care of her immediate issues.  The reason that I was told that I couldn't feed her was they thought that she had an imperferated anus (meaning that her bum was sealed shut), but Dr. C discovered that it wasn't and she had her 1st bowel movement.  (And later, Rayce told me that if this wasn't the case, they would have life-flighted her immediately down to Primary Children's Hospital for surgery).  And in Rayce's eyes, I saw relief.  For the first time in hours, I took a small sigh of relief and held my baby girl.  I nursed her, and to be down right honest, my whole boob was hanging out, but I didn't care (even if we were in the nursery with people - nurses anyway - all around us).  All I cared about was that I was holding her, and feeding her, and that was one step that we got behind us.  
Her leg is clearly twisted up and unusable

She was a tiny thing 5 pounds 15 ounces

Kenasyn getting x-rays at just a few hours old
The girls checking out Kena for the 1st time
Can't believe I have 5 kids!!!!!!!
Ivory holding Kenasyn for the 1st time.  She begged the whole time she was at the hospital, and would throw a fit whenever we took the baby away from her!
Despite her small weight, she had quite the chubby cheeks!
The 7 of us!  I love every single one of these 6 other people more than words could ever describe!!!!



The rest is just the boring stuff.  They did lots of testing, along with xrays and ultrasounds.  We could physically see the problems with her leg, but we did find out that she had severe scoliosis, but her internal organs seemed perfect.  By the next morning, Dr. C and diagnosed her with Caudal Regression Syndrome.  Here is a link if you'd like to learn more about this syndrome.  By Monday morning we were able to bring her home.  By the time she was 6 days old, we had her down in SLC and found out that Kenasyn would have surgery to repair her anus.  She was diagnosed with Rectovaginal Fistula.  There's not a whole lot of info on the net about this, but in Kena's case, her anus formed to close to her vagina, and she also didn't develop her out protective labia lips.  She goes in on June 5th for surgery for a colostomy bag, so that in a few months her fistula can be repaired, and then the colostomy can be removed when everything is back to normal.  We also learned that her leg will be amputated just above the knee, and that she will need spinal surgery to repair her malformed spinal vertebra.  

Ya know, hearing all this is really hard, and I don't want my baby to have to go through the many surgeries in the next year or so.  But I know it's for the best.  I know that she will have a better life in the long run.  I know that she will be in the best hands at both Primary's and at Shriner's, but ya never want this for a child, especially your own.  I love her though, and couldn't imagine life without her.  Here are just a few pix of us at the hospital, and x-rays of her lower body.  


Her leg, straightened out as much as possible (May 31st)


Her spine, you can clearly see the curve. (May 31st)

Thursday, April 12, 2012

HELLO blog world... again

So I FINALLY have Internet again! I tell ya, you never realize how much you use it until you don't have it. Or you have to hold your phone 5 inches from your face to use it there.



ANYWAY... A TON has happened since the last time I blogged. 1st thing 1st... RAYCE WON FACE OFF SEASON 2!!!!!!!!!!!! I am so incredibly amazed at how creative, hardworking, and just one dang talented kind of guy Rayce is. He made a HUGE sacrifice to leave his family for 7 weeks. I found out 2 days AFTER he left that I was pregnant. (so lucky him he was gone through the morning sickness stage!). He missed 3 birthdays, and tons of other happenings with the family. We had so many different stories circulating about why he was gone that I'm not sure if anyone believed me. There was absolutely no communication until about 2 weeks before he came home. And if you watched the show, you got to see that we got to Skype with him. That was about 5 days before he flew home. Plus, the turd wasn't gonna tell me that he won. He was gonna make me wait it out just like everyone else. Luckily, the morning after he got home, another cast-mate from the show texted him and asked him what his wife's reaction was when he told me that he had won. I happened to be holding his phone at the time, so thank you to anonymous cast mate for taking a TON of stress off me! Thanks to all of you out there that supported this amazing man and watched the show. Those of you who didn't, that's okay, you missed out on one hell-of-a show!!!





Next, we finally moved into our own house. We are just renting, but it is a place we can call our own. It is just a few miles north of Rayce's parents house, and we just love it. It is the perfect size for our family, each of the kids get their own room. Which they all find just fantastic seeing that they were all in the same room for 9 months!

Another great thing that has happened is that we found out this little bun in my oven may not have spina bifida. And if she does, the spinal cord is completely enclosed, and the bone structure itself is looking very good. She is growing like a weed, and is right on track for a 34-weeker (which is how far along I am). As of today, though, she has a very rapid heart rate, that if doesn't slow down by tomorrow when I go back for a check, they will take her emergency C-section! Which hopefully all goes good, because not only do I not want to have her this early, but Rayce leaves in the morning for L.A. till Monday!! But all in all, she is healthy and doing all the things that a "normal" 34-weeker should be doing!

And finally, we had some sad news this past month also. Rayce dear Grandma JoAnn passed away. She gave her final breath at 8:05 pm on March 16th, 2012. We are so grateful for all that she did for us. Not only taking in this huge brood for 9 months, but all the life lessons she has taught us over the years. We miss her dearly, but are also glad that she is no longer in pain.