Still here!!!

  Here we are days 8-12. Wow the days fly by. I got a little behind because Ky had a rough turn starting Sunday night. She stopped handling feeds and started retching. That went on through Monday and we eventually had to stop her feeds all together and she was put back on an IV and pedialyte. She had a really tough time and a lot of pain and wasn't sleeping. She started to perk back up today and they are trying to start feeds back up again this evening. We had a meeting with the surgeon, dietician, social worker, patient care coordinator, and nurse. The GI couldn't make it but we outlined a plan since we have been continually ending up back at square one as far as we are right where we were when we got admitted 12 days ago. This frustration was definitely building just due to feeling like even after all these surgeries we are still a lot farther behind than we would like to be. Our next step is having to put in a GJ tube which instead of feeding into her stomach will feed directly into her intestine. The point of that is basically just bypassing her stomach which is not stretching enough to tolerate the amount of formula needed to keep her hydrated let alone give calories. I am trying to keep my positive outlook but some days it's a challenge. I just keep feeling like we are not making progress. They just keep telling us she is complex and things aren't going according to plan because of that. We did get our surgeon to agree to come see her daily himself instead of sending his partners because I couldn't handle all the cooks in the kitchen changing things adding things it was all adding to my stress about the whole situation. We would like to be home by this weekend and let her recover at home but we aren't sure which route is going to get us there. Her cdif infection has passed and we are at least off isolation and able to take her outside. She is such a trooper and loves her wagon rides around the halls. We are so incredibly blessed with all the meals, prayers, visits, and support.

Our miracle baby on days 3-7

Welcome to days 3-7. Days 3 and 4 we not very eventful. We were just pushing IV fluids and trying to get her healthy enough for surgery. Monday afternoon she was scheduled and we took her down to pre-op ready for her to get it done when her surgeon got stuck on a tough case and decided to put her off another day. So Tuesday was a not so patient waiting day to see if she was going to get it done then due to her being an on call case. Her on call time came and went and we started to loose hope that she was going to get it then either. Well a few hours passed and her surgeon called up for her and they took her down and prepped her. She went in at 4 Tuesday afternoon and surgery took 6 hours for the nissen and they also found a hiatial hernia which was causing her stomach to go up into her chest when she was retching. So basically they sewed her stomach in place and wrapped the top of her stomach around her esophagus. She came out of surgery well (better than the last 3 times). She was given narcotic pain meds and slept for about a day and a half after surgery. She has been able to be off the narcotics for a few hours now and finally sat up yesterday so I after a very long wait got to hold her for just a little bit. Today she is being closely monitored for pneumonia because she has a bad cough and fluid sounds in her lungs. She is higher risk because of her weakened immune system. We were also told during surgery they found her very first surgery which was a cleft repair is coming undone and will have to be fixed. So we are waiting to hear when they are going to want to do that. That will be surgery #6. She has still not been able to clear her cdif which is also slowing her recovery a little bit. Overall she is actually doing better than expected. We are waiting for some answers to see when we will be able to bring her home again. This surgery is supposed to make a big difference and we are anxious to see what our new path is going to bring for us. We have such an amazing support system and could not be more blessed. I know a lot of people see the tough side of this but God blessed us with Kylie for a reason and our lives are better for having her and all of this is worth it. We are going to look back at all this one day and she is going to laugh at how much of a little stinker she was. Thank God for miracles!

Day 1 and 2

   Well here we are in room 4004. We haven't had this room yet. We came in Friday morning at 6 am for Kylie's fondo. We were in pre-op waiting for the doctor when the anesthesiologist came to check on Ky and concluded she was too sick to go forth with surgery and postponed it. Her surgeon came in and admitted her to a room and started an IV. They wanted to test her for a bacterial infection that attacks the intestines and moves throughout her body and causes her to have diarrhea and eventually severe dehydration. My frustration with all this was that I had called her "team" of doctors and she not only went in for two appts. I talked to them five times in a week and a half and said she was severely dehydrated and not taking feeds and throwing up as well as diarrhea and severe fussiness (which is not like Ky at all). She lost a pound and a half over 9 days and for most of the week she only got pedialyte because she would throw up her formula. They kept telling me to just continue pushing pedialyte and keep her hydrated. Needless to say none of that worked and she was finally tested and found to have the bacterial infection (called CDIF) that started attacking when she was given antibiotics for an infection of her G tube. Her blood work showed very low levels and she needed hydrating which as of this morning we have accomplished and they are the low range of normal. The new antibiotics are treating her now and we are hoping to try and get surgery done tomorrow afternoon. The challenge is that they have to give her the antibiotics for her surgery that caused her to get sick in the first place so she is in a vicious circle. She has perked up quite a bit today and you can tell she is trying to feel better. We are hoping to try  a feed with formula here in about an hour without throwing up. The last 48 hours haven't been what we expected as we were supposed to be recovering from surgery right now and there are still a lot of undecideds about the next step. We are just so happy she is finally getting the care she needs and making progress towards getting healthy. The doctors will meet in the morning and come up with a plan of attack. We have been shown so much love, support, and generosity from our friends, family, and nurses. Day 1 & 2 down..........more updates to come.

  I'm back!!!! I haven't been great at updating Ky's blog lately, mostly due to my own acceptance that we are loosing ground and things are continually getting worse. I am having a very hard time dealing with her regressing and trying to manage all her needs. She is going in for the most major of all her surgeries tomorrow and we have done everything in our power to avoid having it done but now it's a necessity. She has started struggling with her swallowing, feeding, reflux, and choking again. Her last swallow study showed no progress since the last one which was 4 surgeries/procedures ago. She has the odds stacked against her for tomorrow as she is a drip fed baby which means her stomach is very small for her age and the chances of having to open her up instead of laparoscopically is a lot higher. She will be in the hospital for a while again and recovery is supposed to be about 6 weeks. The procedure is called a nissen fundoplication and I am very nervous about it. I  have learned a lot through this experience but still feel very naive. I have seen so many families recently going through so much with their kids who are struggling through similar or worse situations and it heart wrenching. I just know from how hard it has been to watch Ky suffer that this is not how it's supposed to be. The last week and a half have been bad with her. She got sick and hasn't been able to handle feeds, throwing up, diarrhea, and lost a pound in 5 days (which puts her at 2.61% for weight). I just want her to start getting better. It is such a helpless feeling to watch your baby work so hard to maintain. She pulled out her feeding tube last week which was a scary experience but she handled it like a trooper and she has since got a new one in. She is such a sweet baby and we are so blessed to have her and we just continue to pray everyday for her to start to get better.

The latest and greatest of our adventures!

   I am at a very frustrated point in all of this. Ky had a procedure last Monday to try and figure out why she has regressed so much in her swallowing, choking, and eating. Her surgeons said they couldn't find any explanation and decided to double her therapy in hopes that would "fix" the problems she is having. So today I took her to meet with a new therapist today who agreed there are some things that are not right. She mentioned tongue thrust as well as a problem with her adams apple not working correctly. She said the motion of her swallowing is something she has never seen  before which of course adds to my frustration knowing something is wrong and getting that confirmed but no answers as to how to help her. We are continuing therapy twice weekly as well as what I am working on with her at home. She has started eating again but she struggles and it aggravates her reflux when she does. I have a lot of mixed emotions about where we are. Her doctors took the fundoplication off the table but I'm wondering if that is the right decision and a lot of other people are feeling the same. I have such a hard time with my mother instincts versus what the doctors say because they continue to say she is not text book and they continue to hope she is just going to improve but I am not ready to accept that this is going to be our "normal". I want so much more for her and I'm going to keep fighting for her until she is better. I have learned so much through this experience over the last 8 months. I am her voice and advocate and I know with all the love and support we have as well as her amazing disposition we are going to overcome this.

Surgery Time!

   I've been a little behind on updating Ky's blog the last few weeks. Things have been really tough and nerve racking lately. We went in for a swallow study about three weeks ago because she has started to regress quickly. She started with having one bad choking episode and started quickly getting worse from there. She is now having numerous choking episodes daily and she is not able to eat solids anymore when she was up to eating about 8 ounces a day of solids. The swallow study showed her aspirate into her lungs with fluids as well a thickened fluids. We then followed up with a scope with her ENT doctor. The scope showed her reflux was much worse than it had been and the doctor couldn't even see what she needed to see.
   Now, we are scheduled for surgery Monday morning to have both of have both of her suregons take a further look at her esophagus and make sure her first surgery took and it's not her cleft repair that's causing the episodes to start again. Right now once again the doctors are baffled at why in the span of a month she went from making progress to being right back where we started. The part I feel the most struggle with is not having any answers and now they are talking about a fifth surgery after this next one to do a fundoplication. Which would make it so she can't throw up and her reflux would not be able to come back up. it is a pretty signifigant surgery and I am feeling really anxious about it. The problem with that is reflux doesn't cause choking so they still have to figure out not only what's causing it but also how to safely fix it. If they have to do that next surgery they will have to call in a pediatric surgeon to do the procedure and so we are not sure what to expect as far as stay and recovery time.
   We are praying for her safe and quick recovery and that she is finally able to progress. She is an amazing girl and growing so fast. She is still small for her age but she is sitting so well and almost crawling. She is so close to crawling but she has figured out ways to get round in the meantime. She is also the happiest baby I have ever seen. She is so smiley and loves to "talk" to people. I can't thank everyone enough for their love and support and constant prayers. It means so much to our family and I believe that's what has gotten us through this ordeal. 
   We will be sure to keep everyone updated on her progress as well as some information as we get some anwsers.

Time to celebrate!!

   It has been such a great week for Ky. She has been doing so well with eating and therapy that she gets to go to every other week now seeing her therapist. She has tried sweet potatoes, mashed potatoes, mixed grain cereal, and carrots. She eats orally twice a day and loves her food. She had her 6 month check up last week and even though she is still small for her age she is progressing so well. She is getting more active rolling, blowing raspberries is her all time favorite new thing. She thinks it is the funniest thing. I feel like she is out of the woods and we are just going to continue growing, learning correct eating habits, and developing physically. I have learned so much through this whole experience and I feel so blessed she was given to us to take care of her and watch her grow into an amazing girl.
   I have started following blogs of other moms just learning more about what has worked and what hasn't with them and their kids who have gone through similar situations. It's also a new experience being a stay at  home mom for the first time. I think I always had this idea in my mind of what it looked like and then when we had Ky things changed and now I have learned to be alot more realistic. Now with where we are with her I am learning how to branch out and start living as a stay home mom to 2 very beautiful and amazing girls. I am so blessed to have this opportunity and I am always interested to hear stories from other moms for advice, ideas, and what works for them. I love to hear feed back if anyone feels so inclined.

New Pictures

 Happy girl trying out her new booster chair

 Waiting for surgery

 Trying to escape beofre surgery 12/21/11

 Playing guitar with Papa

 My Babies on Christmas morning

 Big Girl!!!!

Good News!!!!!!

This week has been a little better. She gained 2 ounces this week since getting on her new feed rate. We are super excited that she has learned to roll from tummy to back and back to tummy. She is also doing great with her sitting up and having great control of her muscles. She is a mover and getting into everything and I couldn't be more excited to see how far she has come. Pictures will follow shortly.

Today we went to see Ky's GI. He had some good and bad news. She went from being in the 41st percentile down to the 20th so we have to try and up her calorie intake through her tube since we have had little to no success with oral feeds. It's a tough reality that we still have a long road ahead. We were able to get her off 2 of her medications and replace them with just one which is positive. She has seemed to be having a lot of discomfort and pain lately so they are trying to figure out how to help her and get some answers as to what is wrong. This has been a tough few weeks with her but not near as bad as we have been through.
Our goal this month is to get her calorie intake up without the choking episodes. It has been a little discouraging this month but I just pray for some relief for her and progress.