Friday, August 31, 2012

2 months old and counting

Happy Birthday, my dad would have been 51 today.

Long week, a lot going on...and I'm just feeling detached and numb from it all.  We tried to take a step closer to getting Cecilia to be ready for home and it ended up making her have a scary step back.  I'm getting so tired of that dance!  I wish she would be past stage 2 already.

Monday was Gina's first day back at school. Today was Julia's first day.  The house was a lot more quieter with them gone ;)

Her first day went great.  The girls in school told Julia at recess that she cant be friends with boys.  I told Julia don't let any kids tell her what to do, if she wants to be friends with a boy, then she can!

Cecilia was scheduled for a g-tube today, but they bumped her up to yesterday.  She was really being a good girl despite being starved.  She even smiled at me.  She was only really fussy when she needed a diaper change, but that always happens.

And one of her regular nurses,  stopped in to tell me that the new outfit hanging in her room on a hanger was from her! That was so nice of her!  ♥  It is very cute, I will have to take a picture of it later.

She was rolled away for her surgery, and I left there crying. I knew this surgery is not a big deal compared to everything else, but I was still going to worry about it.  And sure enough, as nobody would be able to predict, Cecilia has had struggle recovering.  They were able to stabilize her super quickly.  Everything happened so fast.  They are worried they were missing something from an echo.  This morning she went down for a CT on her heart, and it showed a little bit of narrowing on her shunt.  Right now I dont think it is a big deal because there is still good flow through her shunt.  I think they are going to just keep a close eye on it, and do something in a cath lab if it gives her anymore problems.  She has an infection in her blood stream now.  I 'm going to try to figure out whats the plan when I visit her...Karl should be getting home any minute.  I know she is still on the vent, but Im hoping it will only be temporary.  I think it is safe for me to calm down now but I just cant stop worrying about was very traumatic for me.     

Sunday, August 26, 2012

Sisters ♥

I guess we all woke up on the wrong side of the bed today.  It did not help that the rain kept us inside waiting impatiently to visit our dear Cecilia.  When we finally did make it to her, the kids were excited but grumpy.  Everyone wanted to hold Cecilia, and at first were fighting about it- which made Cecilia upset.   Sophia got most of the holding time, Cecilia is "her cute baby".  I took the kids out to the tree room after about only 30 minutes.  Then Karl was able to feed Cecilia a bottle (which she drank 1 ounce!) and spend another 30 minutes or so with her in peace.  I don't think I will bring the kids up another Sunday. I also have to respect that Cecilia has a roommate who's sleeping was interrupted because of us.  I felt so bad when my kids woke her up.  Madison is hopefully going to come visit Cecilia soon, and then she will have met all of her sisters!

There was a lot of crying on the way home.  They try so hard to understand why Cecilia isn't home with us.  They can feel my sadness to leave my baby behind even when I am fake smiling.  This has been hard on us all and I just need to keep hanging onto hope that we will all make it through this experience together, and be stronger people on the other side of the outcome. 

Part of today's goal for myself was to have a good sister photo.  I think Daddy did a good job :)  It is not easy to get everyone to look and say "cheese"! A lot of turned heads and blinking, but I could not hit the delete button on any of these :)

Tuesday, August 21, 2012

Goals for home

Yesterday we had a "family meeting" with the Cardiologist, NP and the new PICU attending.  This week was going to be g-tube week, but I have been expressing my concern for her heart surgeon being out of town because just in case something were to go wrong (which I do not anticipate, but anything can happen).  Everyone seemed more than understanding and it is no rush or no big deal to wait for him to get back.  So, after she is healed from the g-tube, her next goal is to slowly get her belly to tolerate a bolus feed because right now she is on continuous.  That is the most ideal for "home" is to get her to a point where I can try to feed her orally, and whatever is left that she can not handle, will go into the feeding pump.  Continuous feeds will remain for overnight. The next goal after this is achieved, is to wean her O2 support.  Why not do it all at once?  Well, Cecilia has proven to us on multiple occasions that she does not like and can not handle too many changes at once.  They think this will be realistically a 2-3 week process to get her to a stable and comfortable place for discharge.  So I asked, "well what happens if she can not reach these goals", her main Dr. said that one thing on the back of their minds is her moderate tricuspid valve regurgitation.  Cecilia may need an early Glenn.  Her leak was very little before Norwood, but once there was more pressure on the right ventricle, it increased the TVR.  She believes that the Glenn anatomy will improve this valve leak, and Karl brought up that the surgeon told him that he could even repair this leak surgically.  So, basically if in a month from now Cecilia is not able to reach her goals for a discharge, we may have to talk about her stage 2 reconstruction sooner than I would have prepared for.  I am still hopeful that she can make it to late fall until we will be needing to have that conversation, and that she will experience a little bit of "normal" home life in between.  Because did I mention How amazing Cecilia looks everyday!!

Thursday afternoon is Open House for my kids school!!  I am excited because I know who Julia's teacher is, but I do not know who Gina's is...and I have a conference with Julia's teacher, but not for Gina's.  I think this is the only way I can meet Gina's teacher before school begins next week, and I have to let her know about our personal situation.  If Cecilia does come home, I need the school to cooperate with me on giving me a "heads up" when there are sick kids in the classroom.  This way I can take extra precautions to isolate Cecilia from a virus.  Gina's first day is the 27th, and Julia has a staggered day later in the week. 

Sunday, August 19, 2012

Sister Day

I guess I will start with Saturday night.  I gave Cecilia a bath, which she hated- lol.  Got her dressed, and tried to soothe her through her fussiness.  I went home after she fell asleep.

I got to the hospital with Gina around 10:30-11 am Sunday.  Cecilia was being cuddled by her nurse ♥  I love when she is getting attention!  Gina ran right up to Cecilia and was just soooo excited to see Cecilia awake.  The first time they met, Cecilia was intubated, and the last time she was sound asleep.

Gina and Cecilia instantly bonded.  Gina was singing to her, and just having a great time being with her.

Gina did not ask a whole lot of questions, she just mostly admired her baby sister.  We made about 5 videos.

Cecilia fell asleep so we were going to go get us some lunch.  Gina asked, "But what if she wakes up and misses us".  I told her it would be ok, because her nurse will take care of her until we come back.

The plan was that Daddy and Julia were going to come and spend the 2nd half of the day with Cecilia, so after 2 we started to say goodbye.  Gina did not want to leave Cecilia.  She said, "But what if her nurse doesnt know that she needs her"...I tend to have the same worries myself, but I was confident that would not happen today.  And the nurse reassured Gina that would not happen. Gina cried on the way down the hallway.  She is going to miss her so much and it just broke her heart to leave our family when they need us.  It broke my heart too.  But, I am so glad that they were able to bond today. 

After a while at home Daddy decided I could go back and he would just hang out at the house with the other girls.  So Julia and I headed out, but we stopped for ice cream first!

Cecilia fell asleep shortly after we arrived.

Julia was not as interested to hold or touch Cecilia as Gina was, but that is just how Julia is.  She would ask to hold her, and be ok for a minute, and then want to go back to coloring with her markers.  It was a good visit.  She had us all cracking up.  Julzie ♥ my weird comedian♥.  Julia asked a lot of questions, unlike Gina.  Julia asked what the wires were sticking out of her clothes.  So I explained that they are attached to her stickers on her belly and put the numbers on her tv (which the #s on the TV were just explained to her before that).  So then she asked to see the stickers on her belly.  I had not really thought what I would do if they asked to or wanted to see her with her shirt off.  So I reminded her that she is all healed from her "boo boo" when the doctors had to fix her heart.  The next question she asked completely threw me off guard, especially since I never explained open heart surgery.  She said, "So, how did they put her skin back together?"  I asked her if she remembered when Gina had stitches, which she did remember, and I told her that is how.  I asked her if she thought our baby was tough, and she smiled and said yes.  The only time Julia seemed uncomfortable was when Cecilia was projectile vomiting.  I noticed right away that Julia was upset, so I told her not to worry, that the doctors are going to fix her belly really soon so that she doesnt throw up like this anymore.  She looked relieved and said, "good, because that scared me".  I hope that I explained it all appropriately, but I was just not really expecting her to want to see Cecilia with her shirt off.  If I could re-do today, I would have prepared myself for that. 

When we got home Gina asked Julia, "hey, did Cecilia miss me?"
J- "No...  Hey guess what, I held her 2 times!"
G- "Oh yeah, well I held her 3 times!"
J- "Well I held her hand"
G- " Oh yeah, well I know something better.  Cecilia touched me!  And I didnt make her, really.  She grabbed me all by herself."
And then they both agreed that she is the "cutest" and that they love her.  One day Cecilia will join in sister rivalries/bickering...One day

Tomorrow afternoon I will find out more about the g-tube, hopefully have the full plan/details. 

Friday, August 17, 2012

Sophia's 3rd Birthday

Happy Birthday to my Sophia Capri...

I was able to go say Good Morning to Cecilia (who is 7 weeks old today), and come back home to wrap Sophia's presents all before Karl had to leave for work.  There has been no time or energy to plan a "nice" birthday party for Sophia, so we just did what we could to make her a happy girl today.

No better way to start your day off right than with your favorite breakfast!

Scrambled Eggs

"It tastes Yummy!"

I let her do as many wardrobe changes as she pleased...especially since she was being pampered with yummy messy treats all day.  (If it were up to my kids they would change their outfits 10 times a day. As you can imagine, Laundry is my nemesis). 

Before dinner, we beat up a pinata!

And it took them over 30 minutes to break it lol...

We ate a little bit of birthday candy, then dinner, and waited for Dad to come home (8pm) with birthday cake, and presents time.

Happy Birthday Sophia ♥  I promise next year we will go all out! 

Cecilia has had a good week.  She has never looked better!  She has almost gained an entire pound since birth!  Weight gain can be a big deal for cardiac babies because they just burn calories so easily.  Here is some pics of her from my phone:

Everyone loves her spiky hair.

Getting an Echo

Well the clear tube is obviously her oxygen, and the yellow tube is her feeding tube.  She is still having some withdraw.  She got a morphine PRN last night, I'm not sure about during the day I forgot to ask the nurse.  So I also found out that Cecilia did SUPER with speech today drinking some of her bottle twice.

I love you Cecilia.  Please pray that she will continue to gain weight and that she will continue to move forward in progress, so that she can home ♥