Tuesday, May 8, 2012

Feistiness seems to be a good quality in a hospital...

It's late Monday night as I sit here very tired after just getting to the RMH.  I just saw myself in the mirror and my eyes are really red.  Not  completely sure why since the last time I cried today was around 2pm...... when they let me hold Cayla again for the first time.  :o)  I can't really describe what it felt like having her back in my arms again.  It just feels so right.  I could have held her all day, but I was falling asleep with her on my lap and really needing to pump.  So they made me put her back, the big meanies...  ;o}  Just remember I'm tired...
The 1st time I got to hold her since being in the incubator and PICU this time round.
Later Monday evening I got to hold her again.  :o)

Last night, Sunday, since I was alone, I decided I didn't feel like going back to the RMH, so I stayed and slept in the room with Cayla.  Her morphine was being decreased all day Sunday and her agitation level was increasing somewhat, although not as much as I thought it would.  The new nurse on the night shift wrapped her up in a cocoon and she seemed content.  But later that evening she would not settle down for anything.  So the nurse finally said she'd check her diaper.  When she unwrapped her there was blood all over her right side of her body.  The little stinker had worked her arterial IV completely out of her wrist.  It had been sewed and stitched down, but that didn't stop little Miss Cayla... What a mess.  I got to hold her up in the air while the nurse pulled the blankets and such out from under her, but I still got to hold her.  :o)

The nurse also noticed that her central IV in her jugular was bleeding and oozing too.  The doctor came in and he tried to clean it up and flush it and see if it could be used.  He couldn't get it to do anything.  It had been jarred enough that it was no longer in the artery.  He left not sure what to do with it since she'd just lost her other important IV.  Well, the nurse got tired of messing with the leaking and bloody thing and just pulled the IV out.  Let's just say when the doctor came in later, he was not happy, but unfortunately I slept through all of this drama while right there in her room.  I'm just a little tired.  It all turned out to be a blessing in disguise.  It has sped up the recovery process.  Without her central IV, they can't give her TPN.  Please don't quote me on any of this, I'm not sure I remember everything they said.  TPN is the nutrition IV that's I guess like liquid food.  So they spent yesterday trying to wean her off some other high something liquid IV so they can then start trying to feed her breast milk directly through her feeding tube in her nose to see if her tummy can handle it and not throw it up or anything.  If she can take it, then they'll move on to feeding her either by nursing or bottles.  If the lactation nurses have anything to say about it...  I just need to find them on the NICU and make sure they know where we're at with all this so they can go to bat for me.  :o)  No, I'm not conniving...  But this is really great progress and has been fast forwarded because of the whole mess with little miss innocent Cayla pulling out her IV's...  So, yes, feistiness is paying off in the hospital.  :o)

Well, it's now Tuesday night and I'm trying to write in the blog again.  Monday, Dr. Stewart the surgeon was stopping by to check her vitals really quick, and found out about the IV's and said that's great!  She's progressing well!  So, since she still had the other IV in her other arm, no one was worried.  My mother-in-law came up to visit on Monday which was so nice to see her.  I am truly blessed with my inlaws.  Cayla was sleeping most of the day and fussing a little.  The doctors wanted her blood gas taken but needed to draw the blood from an artery.  So two nurses were digging around her foot for an artery to draw blood from... very hard to watch, but I just kept comforting Cayla and tried to ignore them.  Finally got some blood, came back saying it clotted and couldn't use it.  Dug around again somewhat got some... came back again saying it wasn't enough.  At this point, they had already put her in my lap to hold her.  The nurse just said to hold her still and in 2 seconds got the blood she needed that she and the other nurse couldn't get in 20 tries.  So we were all glad that was over.  She was doing well and they were talking about trying the milk through the tube on Tuesday and going from there.  I got to hold her again last night and all seemed well.  I forced myself to pack up and try to get some sleep at the RMH.  I got here pretty late, and was too tired to finish the blog. 

This morning I got up at 5am and started my day.  Didn't get out the door until 7:45.  I was on the shuttle to the main hospital when her nurse called me.  He wanted me to know that Cayla had a rough night and she managed to dislodge and pull out another IV, the last one in her other arm.  They have to have an IV in her at all times.  Preferably one in an artery.  Apparently the nurses tried to get a good line in many places on Cayla, but couldn't get it to work (so glad I wasn't there).  She had let her rest and quit trying when Dr. Stewart showed up at 5am.  He saw all the many attempts and decided to fix it himself.  So he put a central IV in, just below her left shoulder above her chest.  She can't really get to it, it's out of the way and shouldn't get dislodged.  Gotta love Dr. Stewart.  Her poor little arms are chocolate colored from her wrist up a couple of inches with bruises from the dislodged IV's.  This time she got in trouble for her feistiness...  They realized that she generally stays calmer when bundled up in a blanket, so they turned the heat off her bed and instead of letting her lay open with handcuffs, they put socks on her hands and bundled her up this week.  Well, I think that everytime they came to poke her foot or check whatever, she fought to get out of her blanket and let them know what she thought about it all.  Well, all that rubbing and fussing and moving her arms up and down in the blankets against her, is how she managed to dislodge both IV's on her arms.  Oh well.  She's doing better now.  Oh and I managed to salvage one of her handcuffs as a momento...  :o)

What all this means is that they took blood samples while she was still pretty upset throughout the early morning hours.  Well, the numbers were all messed up too.  The doctors say she looks fine, but they have to go with the numbers in front of them.  So they put everything as far as progressing goes on hold another 24 hours.  Put her on some heart meds to assist her heart and bring her numbers down. They kept her off starting with milk today and are not sure they'll let her start again tomorrow.  We'll see.  SO, maybe feistiness in a hospital isn't always good, but I do believe it will benefit her in the future with all her future surgeries. 

Got a call from the orthopedic doctor today.  He wants to start asap on her club foot to get the 1st process of correcting it done before her next heart surgery in September.  Plus, her bones are still cartilage and much easier to work with.  He does feel that her foot will need casting.  He will use the Ponseti Casting treatment on it.  Here's a link explaining it because I don't want to try to explain it.  http://www.hss.edu/conditions_the-ponseti-method-for-clubfoot-correction.asp  I talked to Lowell and we are going to have to do this starting this week.  He would have normally started when she was first born, but had to wait for her to be stable from heart surgery.  So, we have to have a new cast put on each week for the next 5-6 weeks.  More weekly trips to Cleveland Clinic.  Big sigh.  Whatever needs to happen, let's do it.  So, so blessed to have insurance...  Well, these first 2 casts will probably be put on while I'm still here.  I know this is not life threatening or anything like that, but just reading this article right now, makes me cry.  I can still blame it on hormones, so I will.  I'm easily overwhelmed these days... I don't know that feistiness will help Cayla when it comes to having casts put on and off her legs each week.  It sounds like it will be her enemy since she won't be able to pull or push them off... Lord-willing.

I can't say enough how special it is to be able to be there by her bed, put the side bar down and just talk, kiss, rub noses and faces and just soak her up for as long as I want to!  She rubs back and opens her mouth and soaks it up too!  I still feel like this is all a bit of a dream.  I miss being home and with my boys, but am truly blessed to be able to be here with her getting free meals and very inexpensive lodging.  God has blessed us beyond measure.  I feel His hand on everything that has gone on.  Even all the crazy stuff.  God has lessened her heart surgery and is giving her an actually pretty quick and good (for the most part, barring her feistiness) recovery. 

We are blessed too to have so many prayers being offered on our family's behalf.  This little line doesn't even come close to letting you know how much your prayers have meant to us!! God is working miracles in Cayla's body and allowing other issues to be there as well, but is giving us the grace to accept each problem as they are found.  We are being held by His mighty hand.  Lowell is having a taste of single parenting.  Getting them both out the door on time with breakfast and lunches packed.  He and Samuel are cleaning up, doing dishes and laundry, and the whole 9 yards.  Your prayers are helping them through all of that, plus being able to focus on work and school.  God is working in our lives and when you go through rough times, you see the hand of God in such powerful ways that I wouldn't trade this whole experience for anything.  I love how God is using it to change us all!  Need the prayers and covet them!  Thank you.  Thank you.  Thank you. 

Well, something light-hearted to end this post with.  Our 16 year old son Samuel is 6'2" and likes to sport a little goatee on his chin to prove he's got facial hair... :o)  Love him!  Well, it makes him look older than he is sometimes and in this day and age when so many young people are having children, people are more apt to jump to wrong conclusions.  During the first week he was here with us and Cayla, at least 4-5different times, nurses came in the room and looked at Lowell and Samuel and then went back to Samuel and said, "So you're the father?" This made me feel very young, but made Samuel and Lowell (Grandpa) feel very old... Well, it finally happened to me last night.  A nurse walked in and saw me standing there next to her bed and said, "Grandma?"  I laughed out loud after Lowell and Samuel getting it.  No, not grandma, but mommy.  I don't think she'll ask that again.  She was older than me too, which was odd.  I would have expected it from one of the younger nurses.  But oh well, it's all good!  I needed a reality check on how I'm starting to look these days... FYI, make-up doesn't cover black circles under your eyes... just thought I'd pass that tidbit of valuable info along.  :o)  Some pictures to close with... :o)

This is what greeted me Monday morning when I arrived.  Do you notice?  All her drugs and feeds were gone!  Nothing is turned on!  Later on they had to add calcium, but the morphine and who knows what else... all gone!  Well, up until this morning some are back on again, but still it was a welcome site then!

Cayla with her face being all pulled from the tape Monday morning.  :o)  Still my little cutie!

Grandma stopped by and got to love on her too!

The rest of these were from Sunday afternoon as Dad and Pat and Lowell and Samuel were all getting ready to leave.


  1. So glad to know how things are going for you! Sunday morning (when I was on nursery duty at church) I spent the time lulling a baby to sleep, and kept praying for you and Cayla the whole time.

  2. Thanks for the update. Yann & I will continue to pray for you all & little Cayla.

  3. Cayla is beautiful and so are you! My heart is right there with you. Please know that if I would be able I would have came and visited already. I remember my journey in the hospital with Gideon which is nothing compared to what Cayla is going through but I can relate to many differnt things. We were only there for a week but it was a trying week! The taking of the blood thing...ugh what a nightmare huh? They constantly had to change where Gideon's IV was because he kept bumping it or it stopped working or something...and it is just heartbreaking on all levels to see your baby poked and prodded...and seeing them fight it. Finally in our situation a veteran nurse came in and did it right away on the first try but she wasn't there all the time! It's not easy seeing your baby hooked up to IV's and monitors either. There just isn't anything like it...it's scary in more than one way. I remember feeling overburdened and alone even with Josh there. Because this was something out of control from both of us. We were in the same situation. Especially after hearing Gideon had a rare heart defect. I remember trying to think of someone that could help alleviate the incredible weight that was on my chest. I needed someone to solve this problem. I thought through everyone....and no one could do it. Then almost instantly I drew my eyes up to the Lord. Duh I thought. Why did it take me so many agonizing minutes or even hours to come to this conclusion? I tried carrying it on my own and that didn't work...that weight almost collapsed me! And no one but the Lord Almighty Himself could carry a burden like that. He created my son, and he created Cayla. He loved them first, He loves them most and has a special incredible plan for them both. Then Josh reminded me that God would not bless us with a child with a heart condition and just leave us to deal with the issue on our own. He will equip us in every way. Reminds me of that song "He will make a way, when there seems to be no way, with Love and Strength for each new day...." I remember this huge burden lifted off my shoulders...the weight of the entire world was on my chest...but not after that. Lol I remembering joking with Josh by saying, "Why couldn't you have reminded me of this hours ago LOL?!" It's beautiful how the Lord gives us humor in situations that need His wonderful Joy, isn't it? Cayla is stunningly beautiful. She is fierce and feisty and perfect in every for she is created in God's image. I love her from afar and pray for you all often. She melts MY heart, I can only imagine what she does to her mommy's! You are an amazing woman, and what an incredible mommy! I am inspired by your journey and those tears (that I had also cried in my journey with Gideon) are just making room for you to fill your heart up with joy and peace when you guys are at home! May God continue to give your family strength and endurance to run this race! You guys are doing incredible!