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.