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~

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

When will we catch a break

Today has been a hard day.  Last night Capri spiked a fever as i was leaving.  This morning i found out she has 2 different kinds of bacteria growing in her blood stream.  We took the picc line out and after 5 different attempts from 1 IV specialist and 2 doctors we finally got a new line in capris foot.  Because of this bateria she will need to be on IV antiobiotics for 2 weeks.  If insurance denys our second request we made today for a life flight home we will be stuck in minnesota till mid March.  I am beginning to feel like we are never going to come home.  Everyday it gets harder to be away from my husband and my other 2 kids.  Im pretty sure they think grandma and grandpa are their new parents.  I am trying to be positive and i know we are in the best place to have a sick baby but come on!  2 blood clots 2 lungs collapses 2 bacterial blood infections a chylus leak 2 major heart surgeries 3 failed attempts at extubation... when is it our turn to catch a break?  Baby girl i know you like the attention but its okay to let the other kids get some of the bugs once in awhile.. just stay healthy~

Hopefully we will hear from insurance tomorrow and at least have a plan on moving forward.  Something to look forward too.  On a  positive note our friend Grant was discharged today.  That little boy is a champ showing all of us up.  Nathan is still stable and will hopefully attempt extubation tomorrow.  He has a long road ahead of him as well.  If nothing else we will have company in our misery :)

Art of Deduction

I am sorry to say, but for those of you who came here looking for more amazing writings from Mrs. Ware, you will have to wait until tonight. I am informed that people are actually inquiring about my ware bouts and what it is like from my end of the spectrum. Well, where oh where do I start.  Since my last update on 1/30/14, things have not really "changed", but rather altered a bit. Now that Capri seems to be doing much better in her recoveries, my nights filled with worry and wonder have now been replaced with promise and excitement. The amount that I miss my family has grown more colossal, and I am ready for them to come home, Not today, but yesterday.


I have spent the last few weeks still trying to find ways to fill my time. I have been looking for a project that will really pass the time, and challenge my mind.  While doing laundry, I looked around my unfinished basement remembering where I lift off 2 winters ago and planning out what still needed to be done. In no time at all I managed to find some Lowes gift cards I had and I just could not let funds remain on them any longer. Off to Lowes I go to buy the supplies to finish a basement. Does anyone here know just how many 2x4x96" boards can fit inside of a Saab Sports Sedan? You would imagine the looks I got in the parking lot when people saw me wheeling out a cart full of wood and popping the trunk to a mid-size sedan. I can't prove it, but I am convinced people were "pretending to talk on their phones, and looking for something in their vehicle" just so they could stick around to see if what they were seeing was actually taking place. As people watched with disbelief, I think around the 6th board, some of the on-lookers started a betting system on how many boards would fit. I think there were 4-1 odds betting on which window would get shattered first. 5-1 odds on total amount of boards I could fit in, which had a 6-1 odds bonus if they guessed correctly whether the trunk could close or not for my departure. I managed to fit 34 2x4x96" boards in my car without so much as rolling a window down, and the trunk closed without the assistance of a rope. I think 98% of the people watching this spectacle still don't believe what they witnessed. 


I finally get home and after I am finished unloading my cargo I think to myself, let the magic begin. It is always fun to have a project where I get to cut, break, measure, use a hammer to swing it violently then repeat. After much time of basement work, a little cutting here, hammering there, and running out of boards,  I stop and step back for a good look at my handy work and at that time my mind has been relieved of fear and lonesome, and replaced it with deep concern for my basement building abilities. How did that get up there, why does that board not fit, why are there so many screws left over, what is that dripping sound, are just a few thoughts processing through my mind. Not to worry, I did plan ahead and picked up a roll of duct tape while I was at Lowes for situations such as these, that's this weeks project.  By the way, does anyone know someone that can clean up 4-5" of standing water in a basement?   

 But in all seriousness, it has been a great way to pass the time and just not think about anything except measurements and lumber. It has been time well spent over the last couple weeks I am excited to keep working on it and my other projects.


I cannot post today without saying thank you to all those who have brought me dinner over the last week. It has been great to meet all of you, and it has been great to eat real food again. It could not have come at better timing, when I was provided my first meal, just the night before I had ran out of hotdogs, and was down to my last cup-o-noodles. Speaking of that, did you now that's not real meat in those things? I have learned the craziest things the last few weeks. But honestly, thank you, they are so amazing and the food is amazing! The pot roasts, chili, chicken tortilla soup, pizza, tacos, chicken and pork burritos that would give Café Rio a run for their money, and some delicious chicken turnovers that were perfectly prepared. Kendra might have competition with her chicken turnovers. I must warn you, I judge all my meals like Chef Ramsey on master chef. But don't let that intimidate you, my baseline for taste and creativity is somewhere between a cheese tortilla rollup, and a Jell-O Pudding cup.  Under any other circumstances, I could really get used to this meal delivery service. Now onto desserts, I had some Crepes last night that were amazing. I was given some churro cookies that were full of flavor and awesome, a caramel chocolate whip cake/pie that was great, and some glazed donuts that really hit the spot, plain glazed is my favorite. As you can tell from above, I have been eating well while Kendra has been gone.... Honey I was just thinking, if you wanted to stay back there a day or two longer to see all that Minnesota has to offer, that is fine... You deserve it!


I have started watching a new show called "Elementary", and it is very good. A show about Sherlock Holmes and Ms. Watson. Another personal recommendation from myself for some good entertainment.  Being home alone the last 3 weeks, on top of everything else, I have actually learned quite a bit. the next time I post, I will list some of them so that other husbands can print them out when their wife goes out of town and use it as a "survival guide".


Now back to your regularly scheduled author.

 

 

 

bottle feeds

Miss Capri drank from a bottle!  for most babies this is nothing but for our daughter it is huge!  She wasnt able to take a bottle for around 5 weeks.  When they finally let her try she drank it down as fast as she could for the first day.  Then she realized that we were giving her formula that was actually really gross so she lost all interest.  We tried and tried but she would not even attempt to suck on it.  Today we tried another bottle from the NICU to see if that would help.  Its a bottle designed for preemies with cleft palates so it has a very slow flow (which is good because she is still at risk for aspirating).  After a few attempts she latched on and drank for almost 15 minutes.  She fell asleep about 2 minutes in so it was mainly just comfort sucking but it was still sucking!  We will continue to try and hopefully get to the point of regular feeds so we can get that pesky feeding tube out of her nose.

The rest of the day has been pretty quiet.  We went on a wagon ride with our buddy grant to see the catholic chapel and another ride by ourselves.  I ran into a friend from worland in the cafeteria which was quite the site to see.   She took our stroller back to worland for us so we dont have to pay $100 to ship it.  We are also still working on figuring out the plans to get us closer to salt lake.  We wont hear much until monday though because no one works on the weekends.

a bump in the road

Once again our plans have changed.  Insurance seems to think that our flight back to utah is non emergent so they are only willing to pay for 80% of the bill leaving us with a huge portion that we just cant afford.  The doctors are going to call and explain on monday why Capri does need to be moved and why she cant just fly commercially to hopefully help them understand.  If they still disagree however we will need to stay in rochester until she is fully better and able to fly home commercially ;(

We spent the whole day having visitors from throughout the hospital coming to see us and say goodbye.  More than a few tears were shed realizing that this may be the last time i ever see any of these people.  Dr Oliver came in to see us and give me a hug.  He sat in our room for 15 minutes telling me how he prays for Capri every night and how much cares about the 2 of us.  He told me what an amazing mom i was and how much he admired me.  This man who is one of the most amazing people i have ever met admires me?  It was such a sweet sentiment and it made my whole week.  Everyone we have met in Rochester have been such outstanding people and i truly am going to miss each and every one of them. 

We will be here at least until the middle of next week possibly  the week after now.  Hoping to figure out all of the kinks with insurance and get our family back together as one.

Hold your breath and pray

What a day its been.  I got to the hospital this morning to find out our friend Nathan was in surgery for his 2nd attempt to get off ecmo.  An hour into it Jessica got the call to come down and talk to the dr.  Quick means good right?  Hes off ecmo and everything went smoothly.  Amanda and I sat in Capris room talking noticing that all of the nurses were gathering by Nathans room and a quietness seemed to blanket the ICU.   Our nurse came back with a solem look on her face and said she didnt know anything but things didnt sound good.  Amanda got a text shortly after saying that Nathan was in bad shape and that he probably wasnt going to make it.  We ran out of the room to find Jessica.  Our babies were having good days.  We are planning there discharges.  Jessica needed friends right now.  We went into the conference room where Nathans parents were.  As soon as eye contact was made we all felt the tears coming.  Jessica explained that they were unable to take Nathan  off of lifesupport and the only thing left to try was to do the glenn (one of the surgeries that Capri had).  There was a lot of internal bleeding and not a great chance that Nathan was going to pull through.  This is something that is always in the back of our heads having a sick baby.

   We all know that at anytime we could be told that our baby was at the end and is not going to make it.  Knowing that and living it though is compeletly different.  Ive known this mom for less than a week yet i can feel my heart tearing apart like it was my own child in the operating room.  These parents are amazing people.  Its not fair.  None of this is fair.  We spent the rest of the morning talking about our lives, our experiences in the hospital and life at home with a sick baby.  We all come from such different worlds all across the country yet our stories are all the same.  I wish that my husband was here.  I am jealous that these other moms have their support system here. They have someone to lean into and cry when things are hard.   I am so grateful that i have an amazing husband who loves his job and is willing to sacrifice being here so he can continue to pay our bills and make sure that we are supported in every other since of the word but somedays i really wish he could just come by for the day. 

Amanda and I ran to the cafeteria with her husband to get snacks and drinks for everyone.  When we got back (with a bag full of every kind of snack you could imagine in hand) we saw Nathans nurse talking in the hallway.  My heart stopped and i felt that lump in my throat.  He didnt make it.. How is this family going to get through this?  How does anyone get through this?  But then as we walked by she smiled and said "Its good news".  Those 3 simple words and everything changed.  We walked into the room to see his parents on the phone crying telling their parents that Nathan was ok.  He made it through surgery is off life support and is stable.  Thank you God he is stable. 
We spent the next hour laughing listening to Chris's stories of being in the marines and the crazy things he saw overseas.  Of Aarons stories being in Vegas and the.. well crazy things you see in Vegas.  The entire dynamic of the room has changed.  We could all breathe a little easier.  These girls have become my family out here and i dont know what i would do without them.

Capri is doing great still improving everyday.  We will be lifeflighted back to Salt lake on Monday where she will finish her healing at primary childrens.

staying the course

Capri has had an upset stomach most of the day, throwing up every few hours.  We did Xrays to make sure the feeding tube was placed where it was supposed to be and discontinued her formula for the chylus leak.  I hope we can figure out the problem soon it makes me so sad to see her get sick during every feed.  Besides that not much else happened today.  ENT still really wants to take her down to look at the erosion in her throat but cardiology is fighting against that saying that it will put to much strain on the heart.  Insurance approved our lifeflight home and we have talked to capris cardiologist back in salt lake to get her back next week.  The plan is to fly home next tuesday.  Ironically that is the day we were scheduled to have Capris open heart surgery before she changed our plans.  What a perfect day to go home.  Our other little friends in the ICU are still fighting to become stable but everyday gets a little better. Please continue to keep Nathan, Grant and there families in your thoughts. 

talk of going home

We spent today working on healing.  Capri is completely off of oxygen now and off of all IV medications except for her blood thinners.  We are trying to expand her stomach to get her to start eating more.  As of right now she has no interest in eating from a bottle, she wont even attempt to suck.  We are hoping that with time she will realize that she likes food again and start trying.  They have decided not to do another swallow study for now because she will most likely fail so she has to only drink from slow flow nipples and avoid water and clear juices.  She is still struggling with pooping and needs supositories to get things going (sorry TMI).  All of her issues right now though are just minor things.  Things we can deal with at our home hospital.  So we are starting the process of getting home.  The social worker started getting ahold of insurance to approve a lifeflight back to salt lake sometime next week.  She isnt strong enough to leave the hospital yet but the care that she needs is something that our home hospital is more than capable of taking care of. 

It has been 6 weeks now that Capri has been in the hospital.  That is how long most moms take off for maternity leave.  With my other children i remember 6 weeks going by so fast and not being ready to get back to the real world.  Now that is all i want.  I want to be home to make dinner, to do laundry without having to go to the laundry mat, to give night time baths and fight with kids about brushing their teeth.  This 6 weeks have been the longest 6 weeks of my life.  I know that our end isnt close but if we can at least get back to salt lake i can be close to my husband and other children.  I cant wait for the day when we get to say we are going home all together as a family. 

lots of improvement

I moved into my new hotel last night.  When Mike came to visit i sent my computer home with him because i had one in the ronald mcdonald house so my posts will be in the mornings now because i will need to use a computer at the hospital.

Capri is doing AMAZING!  We spent all day yesterday playing and working on motor skills.  We sat on a mat on the floor and worked on sitting and head control.  She is so tiny it is funny to see her sitting up.   She is smiling all day long and trying to talk to the doctors. Her voice is still wraspy/squeaky so when she gets excited and tries to talk high pitch squeals come out that scare her.  She looks around like "who just did that?"  It is adorable.

Today we gave her a real bath in a tub.  This is one of the first baths she has had this year.  She smells SOOO good.  Sponge baths just dont quite cut it.  We also took her off of oxygen and she is staying in 100%.  Her right lung has finally started to open up and is looking great.  We are going to start trying her old formula this week.  She has lost pretty much all interest in sucking from a bottle so getting her to eat is going to be a struggle.  Until then we will just feed her from the feeding tube.  We are transitioning her over to taking her medications orally.  She will come home on 2 heart medications 2 diaretics, viagra, and she will need shots in her stomach twice a day for the next 3 months.  So the surgery wasnt a fix all come home a new baby but we are getting there.  In time we will be able to ween down the medication to 2 heart meds and 1 diaretic until she is around 6 years old.  At that time she will need another surgery to stop her SVT and then we might be able to be med free.  My baby girl is doing it.  She has finally decided its time to get better.  I am meeting with social work and discharge nurses today to make a plan to possibly come home next week.  That seems so surreal to say..  we might be coming home!! 

"how did you get through this"

It has been over a week of good news.  Capri is finally doing it.  She is finally getting better.  She is completely off pain medications now and is still suffering from withdrawals but is getting better.  She doesn't have much of an interest at all in taking food from a bottle but the formula they are giving her for her chylus leak is supposedly pretty gross so that is understandable.  She should be able to go back on her regular formula next week I just hope its not to late and she will still take a bottle.  She is still so tiny, we have put her back in newborn diapers.  We worked with her occupational therapist today on remembering how to roll over and head control.  She gets angry easily and doesn't have a whole lot of interest in doing much but lying down.  She can take as long as she needs though, we will get there!

I also learned today that I have been picking her up wrong.  Because they had to crack her sternum open to get into her chest you aren't supposed to pick them up from under her arms.  Oops!  She hasn't seemed to mind though, that is going to have to take some time to get used to.

I know I have said a million times how grateful I am for the wonderful people in our lives and I wish there was a word to truly describe my feelings.    Today the town I grew up in held a fundraiser in our behalf.  According to my mom there were so many people who came out to support us and tell my parents how they read my blog and pray for our little girl.  They raised enough money to alleviate all of our stress financially.  I spent the afternoon next to Capris bed crying so beyond grateful that people care about us. I am so lucky to have grown up in such an outstanding community that truly cares about one another's well being.  I will forever be indebted to all of these wonderful people and cannot wait until the day that we are in a place that we can help another family in need.  This experience with Capri has truly changed the way we live our lives. 

I spent the afternoon visiting with the other two moms with EA kids.  Listening to their stories, their trials.  One mom kept telling us how lucky they have had it.  That in there 8 months with dealing with ebsteins they haven't had to deal with any of the stuff we have.  I look at her though telling us stories about how during her sons first open heart surgery he had a stroke and seized afterwards.  In my head I am wondering how in the world did you get through that.  How horrific that must have been to deal with.  I look at our story and while we have been in and out of the hospital most of her life we haven't had to deal with anything like that. This is our first and hopefully only open heart surgery.  And to the other mom whos son has already had two other procedures both which didn't work.  When they got here his tricuspid valves where shred to pieces and there was nothing left to fix.  So Dr. Dearani created new valves out of some part of a pig.  not replacing the valve but actually creating new ones.  A procedure that has only been done 2 or 3 other times.. ever.  Handing your son over knowing that they are doing something completely experimental.. how nerve racking that must be!  How did you get through it?? They talked about bringing there babies back to the OR.  They were awake and playing.  They weren't sick like my baby.  How hard that must have been to walk away from your "healthy" baby and hope that you were going to see him again.   I guess we all get through these things the only way we know how.  We hold our breath and hope to God that everything is going to turn out alright.  And in Capris, Nathans, and Grants case they did.  Our kiddos our going to make it!  They all had different pathways that lead us here but in the end they all are fixed and we are all going to be okay. These families are from all across the country but the 3 of us are going to be friends forever.  I am so grateful that we had to come 2 months early for surgery so I was able to meet these wonderful women.

head cold

Well I think my body has finally decided its okay to let its guard down.  Ive spent the day curled up with a Kleenex box feeling like someone filled my head with hot air.  I have loaded up on medicine and am hoping that tomorrow I will feel better so I can go see capri.  I didn't go in today because I don't want to risk getting her sick and setting us even further back than we already are.  I had a wonderful mom bring me soup tonight and sit and visit with me.  I have met all of these amazing people since I have been in Rochester I feel like we need to have a going away party when it finally is time to go.  I don't have a lot to report for capri today, the nurse said she is doing great and just working on eating.  They weren't going to make any changes today just keep healing.  hoping that I can go and see her tomorrow.

new friends

Hey princess, mommy is pretty dang proud of you today.  Capri is continuing to get better.  She drank about half of her feeds through a bottle today and had the rest through her feeding tube.  The doctors are very pleased with her progress and want to watch her over the next two weeks to try and finish getting her lungs to heal.  She also needs to still pass a swallow test before she can have real food or drink out of a bottle that doesn't have a slow flow nipple.  Her ENT doctors want to go down and look at her erosion to see how it is healing but the cardiologist doesn't want them to because it will put strain on her already very fragile heart.  She is taking lots of steps in the right direction and I am so happy that we are finally starting to discuss go home dates. 

I spent the morning with some moms who live in Rochester making valentines cookies.  It was nice to feel somewhat normal and be around other people.  I don't feel alone out here anymore.  I have my friends who keep me fed and bring me treats.  One who is even going to color my hair for me tomorrow.  Then I have my heart mom friends.  I have met the most wonderful mom Amanda.  Her son has the same heart problem that Capri has and went in for surgery on Tuesday.  He is showing Capri up and is already off the ventilator.  Im sure he is going to be up and playing tomorrow and will probably beat us out of the hospital.. He has such amazing parents and I am so happy for them.  There is another ebsteins mom that is handing over her son tomorrow morning for surgery with Dr. Dearani.  His is a very complex case just like Capri so if you could send little Nathan good vibes tomorrow to have a successful surgery I sure would appreciate it. I am so grateful to have met all of these other heart moms during our journey.  I have amazing friends and bar nun the best best friend you could ever ask for but people who haven't been through the trauma of almost losing there child don't understand to the full extent of what it feels like to go through this.  Having these other moms who I barely know give me this sense of comfort to know that everything is gonna be alright and I'm not alone.  I love all of them!

I have to check out of the Ronald McDonald house on Sunday because they are doing renovations and shutting down half of the center.  I will be moving into the best western.  I am sad to leave all of the families and all of the wonderful amenities but I am a little excited to be able to go back to a place that has a gym so I can continue to run at night.  I am hoping that it will be a short stay and Capri and I can get back to our family soon. 

surrounded by postive energy

 It is amazing how quickly your world can change while you are in the hospital.  Yesterday Capris doctors were talking about having to re intubate her and that she was not doing so well and that they were worried.  Today was one good thing after the next.  I love days like today.

When I came in this morning the first thing I noticed was her feeding tube had been placed.  I apparently squeeled with excitement and told the room full of doctors how excited I was.  They all started laughing and said "well that's a first.  Most moms start crying when they see we have placed a feeding tube."  This means my baby gets to eat though.  My tiny 9 pound 7 month old gets to have calories!  This is wonderful news to me. 

Next we did ultra sounds on her legs to see how her blood clots where doing.  She has been on blood thinners for about 3 weeks so we were hoping that at least one would be cleared up.  This afternoon we got the results back that both clots were gone!  Her blood is flowing great and we can now ween her off the heprin!

We also decided today to finish weening her off of her pain meds.  By tomorrow the only iv meds left will be a small blood thinner because she still has a central line and IV fluid to help her with her nutrients until she can get to full feeds.

We also gave her a bottle with formula for the first time today.  She is on Enfa port because of the chylus leak (when they knicked her lymphatic system during surgery).  They warned us that it is horrible tasting and that most babies wont eat it.  Well she drank it down with no problems.  We will slowly go up over the next two weeks and try to get her back up to drinking 24 ounces a day.

I posted a thing on facebook today asking my friends to write something positive that had happened to them during the day so I could fill my "space" with positive energy.  Everyone's responses where so great and it was so fun to read.  here are some of my favorites:

Brittany Briggs Hadeyn likes to think he is big and walks himself into his school, he usually gets caught up talking to friends but today for the first time he turned around and waved goodbye, had me smiling from ear to ear :)

 

Amber Mangus My daughter woke up while being on ventilator and gave me the most beautiful smile.

 

Alyssa McDonald I went to bed last night not feeling very good. I coughed and coughed through out the night. My sweet Roman must have heard me at some point because when I woke up I had a glass of ice water and a box of crackers (what he eats when he has the flu) on my night stand. He must have got up EARLY in the morning to get them for me. I immediately went in his room and gave him a giant hug! He asked me if I saw what he had given me and if I felt better. What a thoughtful 7 year old I have! Totally made my day!!

 

Sara Hornick We got news of a grant that will help immigrants/refugees in our area!

 

Desiree Albertson My boobies are finally getting adjusted to pumping... No more blood in the milk

 

Lori Martinez I saved a baby's life a work early this morning. Well me and my nicu team. Life is good!

 

Andrea McCrummen Mull Kris will be home tomorrow and I get to spend time with my precious baby boy:) In the last 7 months I have learned not to take my kids for granted no matter how old they get, Capri taught me that! Sending continuous prayers and much love!

 

And my very favorite one was from my husband who text me this picture and told me he was pretty lucky because he had a rockstar for a daughter who looked just like Pink :)

 

lungs

Oh Capri sweet baby...
This morning both of Capris lungs have collapsed again.  (well technically the right one has never actually fully inflated)   No one can figure out why she is struggling so much to keep them inflated.  She is skin and bones weighing in at a whopping  9 pounds 3 ounces, she has no more fluid to give so why wont her lungs stay up?  Despite all of this she did remarkably well today.  We spent most of the day laying in the recliner watching law and order and writing thank you cards. 
Im really not a fan of the doctor we have this week.  Every time I talk to her she is so negative and keeps reminding me that we are inches away from needing a trachea.  I am aware.. you don't need to remind me over and over.  Capri is going to show you, shes tough.. shes gonna make it.  We are gonna be okay.

We also discussed a Gtube today.  We arnt there yet but it is a possibility.  A Gtube is a surgical procedure where she gets a tube put in her belly with a cap covering it.  When she needs to eat we just attach the feeding machine and give her nutrients that way.  They need her to eat but are worried that putting a feeding tube down her throat could compromise her breathing at this point.  However surgery could be a big set back because she will need to go back on the ventilator, they will need to give her lots of fluid which she struggles getting rid of.  They will have to sedate her which she again, struggles with.  We are going to give her until Friday to show us that she can get better and hopefully heal then decide what the next step is over the weekend. 

A weekend away

A weekend away from electronics.  Playing with my babies and spending time with my husband..  It was just what I needed to know that I was strong enough to keep going and everything was going to be alright.

 We had so much fun at the mall of america.  We spent the whole day riding every ride and letting the kids do whatever they wanted!  My mom was with Capri so i knew she was in good hands and I let myself just be in the moment and forget about all of the other worries.  Ashton and I did a ropes course together where he climbed 4 stories and walked across tiny boards with no fear.  I was so proud of him as i was walking behind him trying to get my legs to stop shaking so i wouldn't fall. Baylee wanted to go to barbie land all day but when it was finally time to go we found out it doesn't open up until the following week.  she kept throwing pennies in the wishing pond wishing for the store to open so she could go try on barbies clothes and see the dream house :( Instead we found the disney store and she bought 2 princess barbies and tried on princesses dresses.

 We stayed up late everynight watching youtube videos and singing "call me maybe" and "carry on" over and over again.  We talked about when mom was going to come home and where they were going to be staying for the next few weeks.  Baylee asked if we could just fly home tonight so she could sleep in her bed.  Ashton kept asking if we could please just get capri and bring her with us.  It was so nice to be together but a big hole was still there.  We need our baby C.

Sorry for the sideways picture, i cant figure out how to turn it.. thats what my IT husband is for.  Today it is back to reality.  Mike left Rochester at 12 with a heavy heart.  I get so caught up in my own stress that i forget how hard this is on  him.  He comes home to an empty house everynight.  He needs to be at work to concentrate and make sure that he is getting all of his tasks done while still worrying about his baby girl.  It was so great to have him out here even if it was only for a few days.  Daddys make everything better.   My mom and the kids left around 3 and now it is just me and Capri.  She did a swallow study today to see if we could start feeding her, unfortunatly though, she failed.  As she drank the liquid her vocal cords didnt close and the fluid went into her lung. She didnt cough or move or do anything.  If we gave her a regular bottle she would aspirate and we wouldnt know until it was too late.

The ICU doctor came in to discuss a plan.  "Capri is just barely treading water.  She is in no way out of the woods, We are still at a point where she could be re-intubated and still need a trachea"  I hate mondays because its a new doctor and they are just learning about capris case. Monday doctors always seem more worried about her stability.  After a few days they seem to be less concerned.  I hope that this is the case this week.
Because of both of these issues we will still be in Rochester for awhile.  She is thinking the end of February to the beginning of march.  We are going to be a fourth of the way into the new year and have only spent 4 days at home.  I hope that this week she will rest and her vocal cord will heal and next week she will have a much more positive outlook.
With all of this i am so grateful that these setbacks are all temporary.  We have not had to deal with anything that is going to be a permanent problem.  She eventually will heal.  It is taking a lot longer than we had hoped but this isnt something we will need to deal with for her entire life.  We can do this!

The tube is out!

Friday morning they took Capris breathing tube out!  She has been struggling, sucking her chest in "retracting" quite a bit.  The doctors were in and out of her room most of the day keeping a close eye on her.  Dr highley told me several times that there was a good chance that we were going to need to re intubate her but that didnt mean she couldnt do it, she just might need more time. 
I was so distracted with A and B that I wasnt able to sit and worry about her breaths.  It was in the back of my mind but i just know she can do it.  and her brother and sister are here, singing her songs, playing and having meltdowns in the background.  Its just like at home, its got to bring her peace, right?  We did a lactic acid test to see how she was doing.  This blood test lets you know if a person is stressed.  When you run a marathon you have a lot of lactic acid in your system.  Capris levels are normal!  So even though her chest looks like she is struggling she doesnt feel it.
 She is going through a lot of withdrawls from her pain and sedation medication. Her body shakes and she cant stop moving.  She doesnt sleep much.  I hate to see her like this.  The next few days they will continue to ween the meds and she will eventually get over the withdrawls.  This was hard to watch the first time we extubated her almost 3 weeks ago. 

My little dude is struggling with this new change. I dont know if it was just lack of sleep from arriving on a late plan or just the melt down of seeing mom again but he spent most of the day going in and out of tantrums.  Not like his normal im kind of whiny for a few minutes then get over it tantrums.. these were full on the floor wont stand up crying kind of ones. This has to be so hard on A and B.  Being shuffled around, not having a schedule and not knowing when mommy and daddy are going to be home and be "normal" again.  I just want to scoop him up and promise him that everything is going to be okay.   I am so excited for this weekend.  We are in a hotel in Minneapolis right now, everyone else is still asleep.  We are going to spend the day at the mall of america riding rides, looking at sharks and going through barbies real life dream house.  I want today to be all about A and B.  No stress, no rules just fun with mom and dad.  They deserve that more than anything right now.

Mike had a long flight to say the least.  He was supposed to leave around 1 getting into Rochester at 430.  Unfortunately yesterday someone in Russia hijacked a plane and disrupted airports around the world.  Mikes flight was changed to 530 and was told that he would be on standby to get to Rochester but they wernt positive they could get him on.   It was silly for him to get into town at 1 in the morning just for us to turn around in a few hours to back to Minneapolis.  He told the flight attendant to just cancel his connecting flight and he would just stay in Minneapolis.  When he got here though, his bag did not.  It is still in salt lake.  They took it off the plane when he canceled the second half of the flight and forgot to put it back on.  Hopefully it will arrive sometime today :)

My mom is staying with Capri today and tomorrow to get her snuggle time in with her and will be giving me updates throughout the day.  I talked to the doctor this morning and he said she is still struggling with the withdrawls but her breathing looks really good and he is pretty sure we are over the hump and will not need to put the tube back in! we are getting closer to coming home!

rollercoaster

Im writing this blog from the hospital.  Waiting for A and B to fly in to Rochester.  I arrived at the hospital this morning to find out that they were not going to extubate Capri. 

• Her xrays looked better
• She was back to full feeds
• Her chest tube is out so she will be able to take deep breaths
• All of her steriod shots have been given
• She has had 3 doses of antibiotics

Everything on paper looks good.  Why are we not taking the tube out? Troy (our nurse) was upset as well.  He fought for her.  He told the doctors she was ready.  I hate this feeling of having no control.  The last few days things have been getting better. I have been happy and felt like things were finally going our way.  So quickly that feeling goes away when you take a step backwards.  That pit in your stomach that is oh so familiar came back as i tried to choke back the tears.  I asked Dr Angunga why? She is ready! I explained my frusteration through my tears and he stayed behind me and was silent.  I could tell in his eyes that he agreed with me.  He thought she was ready to.  He told me he was sorry and left the room.  I asked Troy to call the doctor who made the decision to wait one more day so he could explain.  A few minutes later Dr. Bosch came in.  I explained to him that i was frusterated because i was told yesterday that it was imparitive to get that tube out so we didnt cause permanant damage to her vocal cords.  This "new treatment" they were doing shakes her lungs for 20 minutes every 4 hours.  I asked him if he truly thought that an hour of shaking her lungs was really going to be benefical enough to out weigh the risks of keeping the tube in for 24 more hours.  We talked about the risks of the trachea and why we wanted to give her the best shot possible.  I understand all of this though.  I have spent the last week and a half being told "tommorow we will take the tube out and see how she does, if she doesnt do well we will need to do the trachea"  Everyday i am told not today but tomorrow we will do it.  It is exhausting.  At some point we just have to do it.  Her lungs arent going to be perfect while she is on the ventillator.  Every doctor has  told me that.  It is as good as it is going to get and we need to try before she gives up fighting. 

He told me that he honestly did think that this treatment would help and would give her a better shot so i relunctantly agreed to wait until tomorrow.  I really hope that we will look at her xrays tomorrow and they will give dr bosch a big head and he can tell me i told you so.  I cant keep doing this everyday.  I cant risk permantly damaging her airway for the hopes to avoid a trachea.  We have to let her try.  We have to give her a chance.


As i've sat by Capris bed I have been reading a Jodi Picoult book.  She is one of my favorite authors and as i was in a hurry one of the first days i was here i saw the section with her books and quickly grabbed one off the shelf that i hadnt read.  As I have gotten into the book I have discovered its a book about a mother who lost her child and husband while she was pregnant.  After she gave birth she discovered her child had a heart issue and is now waiting for a new heart.  I dont know how i picked the one book out of two shelves that had to be about a heart kiddo but now i am too far into it to stop.  Tonight It talked about her daughter going into arrest.  Watching them place the pads and her daughter jacknife off the bed.  It brought back our first night in the ICU a month ago.  watching them shock Capris body again and again.  I will never be able to get that out of my head.  It is something that will haunt me forever.

100th post

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Over 200,000 views....

1 very special girl

It has been one month since we drove to the emergency room to get Capri out of SVT.  In her 211 days of life, 105 of them have been spent in a hospital bed.  Today however, she is getting better.  She is getting closer to coming home.  She is healing.  

We took her down to the operating room around 10:30.  I brought my book with the thought that I would be able to finish it by the time they were done.  I was so nervous however that I only read a few pages and I have no idea what those pages said. The doctors came to get me a few hours later to tell me what they found.  Her function looks great.  Everything is stable and working the way it is supposed to.  The tube however has caused some damage.  There is "severe erosion underneath her vocal cords"  Some parts have been completely eaten away.  When left un-treated the body will scar over and close up. Having an airway close up is not such a good deal :).   They are pretty positive that with steroid shots and antibiotics she will be able to heal and not scar.  The most important thing we need to do is get that tube out and leave it out.  

Tomorrow morning is the day.  We will take the tube out in the morning and see how she does.  If she does well then we will start planning a go home date.  If she doesn't do well we still have the surgery scheduled for Friday to put in the trachea.  She is going to do well though.  I just know it.  I have a good feeling.  Plus her brother sister and grandma are coming tomorrow so its good luck all around.

turning the corner

Today was a good day

We took Capri downstairs today for a scan to check her diaphragm.  They wanted to make sure that it wasn't paralyzed during surgery which would cause the breathing issues.  When we took her down they unhooked her from the ventilator and just used a bag to help her breath.  We had her monitors on the bed with us to make sure that her SATS were okay.  She was breathing on her own and staying at 100%.  Every 30 seconds or so the respitory therapist would give her an extra breath  but besides that she was breathing.  She wasn't sucking in her chest, her nose wasn't flailing she was calm.  Once we got into the Xray room they quickly transferred beds and took the scans.  Everything looks great!  Her diaphragm is doing just what it is supposed to. 
As we brought her upstairs I got a phone call from the Ronald McDonald house, they had a room available for me. I put my name on the list around a week and a half ago I am so grateful they have a room.  $15 a night instead of $138 is going to make a big difference.  I jumped on the shuttle to the hotel and quickly packed my things.  I am sad to be leaving here though, the front desk people have been my "family" for the last 3 weeks.  They all know me by name and ask about Capri  as soon as I get back at night.  The shuttle driver is the same.  I have been here for so long now that its kind of like these people are my friends.  They are really the only people I communicate with besides nurses and doctors. 

I got to the Ronald McDonald house and went through the tour of everything.  It is a beautiful 3 story home with kitchens and laundry rooms and play rooms.  They have activities every night to help your stay not be so lonesome.  Seeing all of the other children around makes me miss my kiddos.  A little girl fell and bumped her head today in the cafeteria and my heart latterly ached for her.  I could feel it beating harder and I wanted to just go scoop her up.  I am so much more sensitive to things now.  I have always had the mentality of "well when you fall you will rub it in and figure out how to not do it next time.  Buck up kiddo you'll be okay"  Now the only thing I want to do is hold and cuddle them.  Tell them that its going to be okay and I will take all the pain away, whether that be a bump on the head or a 3 inch incision from open heart surgery.  Let me take your pain away.  Let me make you better.

The rest of the afternoon we started getting rid of things.  We took out Capris chest tube!  It was so clogged with stuff it wasn't doing any good anyways.  We took out her catheter and we took out the IV in her hand (although it went bad and her hand was bruised and swollen so that one wasn't really a positive).  When I held her this afternoon we were able to pick her up with just me and her nurse.  We didn't need our army of people to watch all of the lines and tubes.  Slowly but surely she is getting better.  We are going to get through this. 

Inner happiness

Last night my nurse could tell i was at my breaking point.  She asked me if i had any medications to help deal with the stress.  I told her no but was maybe to the point of needing to make an appointment.  The next thing i knew she had a doctor in capris room with a prescription pad.  She told me to go fill it and to go back to the hotel to rest.  Peggy is like a fill in grandma and a nurse on the side.  She takes care of Capri but she makes sure that im doing okay too.  One day she took my hand, made me go sit in the corner put my feet up on another chair, wrapped a warm blanket around me and told me to sleep.  "No phone, no book, you need to sleep!"  She is a wonderful nurse and i am so glad that we have had her.

After taking the medication i fell asleep shortly after and woke up this morning with the TV on and the remote still in my hand :)  It was the first night I have slept in over a week.  Its amazing what sleep can do.  I feel like a whole new person today. I woke up to a phone call from one of Capris doctors.  It was the ENT letting me know that they wanted to take her down to the operating room and get a better look at her lungs and airway.  He is concerned that she may have a mass somewhere in her airway that is causing the collapse.  Or possibly just a cyst that could be removed.  Or a paralyzed vocal cord. or.. or.. or.. This procedure will help us understand more and then decide if a trachea is for sure the right way to go.  They would take her to the OR at 3.   After meeting with all of the doctors and coming up with a plan i was excited to hopefully find out good news.  Then they came back and cancelled the procedure.  One of the doctors cant do it until wednesday.  So the new plan is OR wednesday to explore then if a trachea is still the best route, surgery on Friday.

The best news is I wont be alone for surgery.  My mom, A, B and Mike will all be flying out!  I am so beyond excited that i get to see my family.  Today is the first day I have been truly happy in a long time.  for 4 days I get to be with my family.  I cant explain how happy this makes me!  I am so grateful for Delta.  They have followed our journey with us and have offered to send everyone back out here.   This is a gift that i will never forget.  I will praise Delta to whoever will listen and will forever be grateful.  Mike travels 2 weeks a month for work and has always flown with another airline.  After the wonderful generosity from Delta he is now taking all of his business to them.

We are going to take the kids to the mall of america for Ashtons birthday.  I cant wait for them to see all of the rides and barbies real life dream house and lego land and well.. just everything.  Two days of normal life being with most of my family remembering what its like to be happy again.  An amazing mom  who's husband is a doctor at Mayo has been coming to visit me while i sit next to Capri.  She is such a wonderful women and she brought me wine so ya know, we are instant best friends :) She gave us day passes to go on all the rides at the mall.  I don't know how we were so blessed to meet such amazing people but I am so glad they have came into my life.   This mom shared a story with me that changed my view on life.  But thats for another blog....

We gave it all we had

We  gave it a good try.  We did everything we could to open up Baby Cs lungs but it just wasn't in the cards.  She's not ready and everyday we keep the breathing tube in we increase the risk of something happening to her vocal cords.  My nurse was pretty blunt with me today as i was having one of my breakdowns while discussing the trachea.  She said "i was here the day she went blue and quit breathing.  We rushed to get that tube in and for a second I didn't know if there was going to be a baby for you to see when you got here.  We almost lost her.  Going home with a trachea sucks and its not what we want and we tried but at least you will be going home with a baby" She put things into perspective for me and she's right.  We will get through this.  We will learn how to use a trachea at home.  Surgery will be sometime on Tuesday.  Once they have it in she will need to stay in Minnesota for the next week or 2.  Once they know she is stable they will lifeflight her back to Salt lake where she will stay at primary childrens hospital for another month or so.  This is our new life.  Its far from perfect and we have had a lot of bumps in the road but we are getting there.  Eventually things will start going our way but until then we will keep on keepin on.

I miss my kids and husband SOO much.  Everyday i Skype the kids it gets harder and harder.  I can see in B's face that she is struggling.  She wants her mom their at night.  I cant sleep at night because it is so quite.  I miss A crawling into bed in the middle of the night to cuddle.  I miss C crying, needing to be fed.  I miss giving baths and reading stories at bedtime.  I miss being a mom.  Its been 4 weeks since we have been in the hospital (3 weeks at mayo) Tuesday will be one month.  I cant believe its only been a month.  i feel like we have been here for ever.  Im ready to go home.

silver lining

Nights are hard.  I get caught up in all of the negatives that happened during the day and tend to forget about the positives. Everyday I have been able to hold Capri.  Normally they don't let you hold the baby while they are on a breathing machine because its pretty tricky.  Our nurses have been so great though and have let me hold her for a few minutes everyday.  I am so grateful for this.  I don't feel quite so hopeless.  We weren't able to take the breathing tube out today because she still isn't ready.  Hopefully tomorrow she will show us that she can handle breathing without it and will be successful in keeping it out.   Ive had several visitors today.  Wonderful people who have heard about our heart warrior and came to check on me.  I am so grateful for these women.  They help this new chaotic life of mine feel somewhat normal.  I am hopeful that tomorrow will be a positive day.