Tuesday, April 8, 2014

tube free baby

Look who is a tube free baby! Just picture a "normal" 5 month old baby  and Capri would fit in just about right :)  At the rate she is going though we will be caught up to "normal baby" status by her first birthday. 

We took her to see a GI doctor today because over the last week she has had a lot of blood in her stools.  (sorry TMI)  I was worried about NEC.. which is where portions of your bowel undergo necrosis or tissue death.  It normally happens in premie babies but is one of the side effects of  the thickening agent she is on to let her drink from a bottle.  Fortunatly her xrays looked normal so hopefully we will hear back in the next few days about the blood cultures to figure out why she has having the gi issues.

Tommorow is a big day for my family.  My sister is going in for surgery to fix her herniated belly button.  I wish we could be there to help her recover but we will be heading to Wyoming in 2 weeks so making a trip right now wasn't feasible.  I am going in for a spinal MRI first thing in the morning to see if I have any permanent damage on a nerve.  I had a pinched nerve 7 months ago that I kept meaning to go to the doctor for but life happened and Capris doctor visits came first and it just never happened.  Well over the last couple months my arm has lost some feeling to it and  feels like I  have a permanent sunburn so we are ruling out any permanent damage.  Hopefully they will tell me I need to take some steroids and just send me on my way.

With any luck at all Capris tests will come back all clear, my tests will come back clear, my sisters surgery will be successful and we can all just forget about hospitals for awhile!

Wednesday, April 2, 2014

we are still here

I cant believe its already been a month since we have been home.  This month has gone by so fast, a whirlwind of trying to get back into a normal routine and follow ups with about a million doctors.  I have enjoyed so much being away from computers and just spending time with my family that i apologize to everyone for not being better at updating on Capri.

She has been dong so great!  She is slowly gaining weight and working on feeding.  She continues to fail her swallow studies but is able to drink from a bottle as long as the milk is the consistency of honey.  Her goal is to drink 24 ounces in a day and right now she is getting about 15 of those through a bottle.  We are so close to getting rid of that feeding tube!

We are also losing her portable oxygen tanks on friday.  I expressed my concerns to her cardiologist about wanting to keep one in my car just incase she went into SVT.  His response was "kendra, its been 3 months since shes had any SVT.. its time to let go of the tanks.. she is better now".  Well its going to be his fault when he sees me in a month and all of my hair has turned grey :)

We are working with occupational therapists and physical therapists 3 times a week to get Capri back on track with normal "baby things".  She is tolerating being on her stomach for almost a minute at a time.  She isnt sitting yet but she did finally laugh for the first time which was the most beautiful sound  i have ever heard.






This whole experience has changed me as a  person. I have watched other families go through experiences like ours and have thought to myself "i am so lucky to have my family"  "im going to hold my kids just a little bit closer tonight"  but then tomorrow comes and life gets back to normal and i forget about that moment.  Capri has changed that in me.  Every moment i have with the kids i have the thought burned into my head "what if this is our last moment together"  Every time i kiss my husband goodnight the first thought in my head is "what if we don't wake up tomorrow?"  This living in constant fear is both a blessing and a curse.  I dont take moments for granted anymore yet i dont know how to get off of this emergency roller coaster.  I hope that in time things will get easier and i wont be such a ball of stress.  That i will remember to cherish every moment but with enjoyment vs fear.  In time im sure I will.  Someday this will all be a distant memory of Capris crazy first year of life.

Thursday, March 6, 2014

update on being home

Well its been a few days since my last post.  I have been enjoying being away from electronics and just spending time with my husband and kids.  we've had a week full of doctor appointments, home nurses and trying to figure out our new normal.   Our pediatrician had not received any information from the mayo clinic so when we came to do a base line check up with him, he had no idea Capri even had surgery.  He was excited to see that she was doing so well though willing to help us with the obstacles she still has to overcome. 

we've had home health nurses occupational therapists, physical therapists, home health delivery people and pretty much any kind of healthcare personal you can think of stop by this week to set up a plan to get her back on track. 

Capri failed her 2nd swallow study so we are still mostly feeding from her tube but letting her try a bottle here and there.  She still has no interest in it which does make me a little anxious for our future.   I think a gtube surgery is probably in our near future but I really am trying to avoid another surgery if at all possible.

Capri decided to pull her feeding tube out on Wednesday while I was putting A and B down for naps.  I called home health to see if anyone could come help me place it but they were all tied up until later that night.  I learned how to do it in December so decided I could just do it by myself.  Well miss C was not about to hold still while I shoved a tube down her nose so I had Ashton hold her head while I tried to place it.  Yes I had my 5 year old be my fill in nurse, don't judge.  I kept hitting the back of her throat and psyched myself out that I was going to stick it into her lungs so  in the end we made an ER trip and waited 3 hours for them to spend 30 seconds to place the tube. This is another reason why putting a gtube in is probably going to be necessary. 

Besides  the medical stuff we have been loving just being able to lay in bed and watch cartoons, making dinner together every night  and having amazing neighbors/friends stop by to check in on us.  It is a wonderful feeling to be home.  Something I have always taken for granted but now I catch myself watching the kids play together realizing just how lucky we are to all be under one roof
 Making kale chips which are surprisingly really good.  A and B loved them.

 Got out the high chair so sis could sit with us at dinner
 
 
 
 
 
 
Enjoying some sweet potatoes. 
luckily her aversion towards food is only when its in a bottle

Monday, March 3, 2014

reunited

I walked out side to throw away the trash as i saw my dads car turn down our street.  I ran to meet them and saw A banging on his window waving frantically.  It has been way to long.  Being away from your children for a month in a half is brutal.  Everyone is home now.  Our family is whole again.

I asked B what she wanted to do today and her response was: well probably just hug you and kiss you a lot.  Fine by me sis!  We played most of the afternoon and visited with my parents and Mikes mother.  Capris nurse came by to change the dressing on her PICC line. A. told him that he was a doctor because only girls were nurses and boys were doctors.  Fail.. we need to talk about this gender equality thing litttle boy.

Capri did great all day. Her oxygen was in the high 90s and she spent most of the day sleeping.  Having the kids run around screaming playing and even fighting is such a calm feeling.  Everything is going to be okay now.  We are home

Saturday, March 1, 2014

pulse ox

Last night was quite the night!  We couldnt get Capris oxygen to stay in the 90s despite having her be on 1 1/2 liters of oxygen.  Both our home health nurse and the cfardiologist where concerned that we left the hospital to early and she maybe wasnt ready.  The on call dr called me 4 times throughout the night to check her oxygen and i woke up probably every 15 minutes to make sure she was okay.

This morning as i was playing with her and getting her dressed for the day I noticed her oxygen was at 105.  How is that possible?  After looking more closely i realized that we had been reading the machine wrong this whole time.  We were looking at her heart rate vs her oxygen.  She was sating at 100 with no oxygen on.  I think my brain has finally decided its had enough and left for good.

We spent the rest of the day playing. I went grocery shopping which was a little surreal.  I just kept thinking to myself.. are we really home?  Do we really get to stay home?  I can cook meals and not have my regular "grilled cheese and french fries lunch"  It feels so good to be home i dont even know how to describe it.

A winter storm hit wyoming so A and B where not able to come home today.  Hopefully the roads will open up tommorow and we will be able to have our family together again.

Friday, February 28, 2014

coming home

When I got to the hospital today, much to my surprise Capris doctors informed me that they were going to discharge her today! She went into the OR to get a picc line placed so we could continue to give her IV meds for the next 2 weeks and then got ready to go home.

We left the hospital around 8 to meet the home health nurse at our house by 9.  When we got here she was already here but they hadn't delivered capris medicine.  Around 1030 he finally arrived and brought a box filled with IV flushes, heprin to keep the line open but forgot the actual antibiotic.  it is now midnight hopefully he will be here soon so she can get her meds and we can settle in for the night.

She is also struggling to keep her oxygen up which is strange because in the hospital she stayed in the mid to high 90s with nothing to help her.  Right now she is on 1 liter and sating at 85,  If we cant get her to back up she will need to be re admitted.

It is great to all be home and will be even better when A and B arrived tomorrow.  I asked B what she wanted to do when she gets home and she told me "well probably just hug and kiss you a lot mom"  I miss my little munchkins so much I cant wait till they are back in my arms!

Heres hoping for an uneventful night and no more hospital stays~

Wednesday, February 26, 2014

home

The last two days have been such a whirlwind ive barely been able to catch my breath.  We found out yesterday evening that insurance had approved the lifeflight and we would be leaving in the morning.  I spent the evening at Amanda and Chris's hotel visiting with them and Jessica and Aaron. Realizing that this is probably the last time we will all be together but not wanting to admit it.  We delayed our goodbyes and said they could wait until the morning.  I tossed and turned all night so excited that it was finally time to come home. 
I got to the hospital this morning around 730 so I had time to see all of the doctors and nurses and say all of my goodbyes.  All morning everyone from surgeons to the janitor lady came in to give us a hug and wish us good luck.  All of these amazing people, my family when I was alone.  I am going to miss them all so much!

We loaded capri into a transport van and then onto the lifeflight.  The flight was so different from our one out to Minnesota.  Capri slept the whole way and did fine on room air.  I took a nap and the lifeflight nurse read a newspaper.  it was a no stress relaxed trip.  Once we got to primary childrens and got the doctors and nurses  re acquainted with Capri we noticed her sats had dropped into the 80s.  I knew being off oxygen was going to be short lived here but I was hoping it would last more then a few minutes.    She drifted in and out of sleep most of the afternoon and woke up just long enough to give her daddy a big grin.  We are back home now but will head up to the hospital first thing in the morning.  It feels so great to be in my own bed with my husband laying next  to me.  Now we just need A B and C back to make our family complete