Tuesday, July 3, 2012

Hello Monday

So glad the weekend is over.  Finally a hospital social worker called me today and is getting on top of Cecilia's documents so we can situate this insurance thing.  Yesterday was a roller coaster, as I'm sure the rest of our journey will be from here. 

There are little things, that happen on healthy baby deliveries as opposed to not.  How does a baby who entered the world being pricked and probed have the will to stay here?  In my heart, I think if she was passed to us before they messed with her, so she could look at her parents, be consoled and loved, she would at least have one good memory.  It must be scary coming out surrounded by doctors and nurses, getting boo-boos, and noisy machines.  I talk to her, plead with her, to stay with us.  When I get the chance to hold her and console her it will be the best day ever.


When I got to the NICU yesterday morning, she was in the middle of having a de-sat episode.    The good news is she reacts to the pumping bag well and climbs back up.  I'm not really sure I want to know what happens next if she didn't.  I notice that if the nurse begins pumping the bag before her o2 sats go below 60%, she doesn't fall under 50% before her climb back up.  However, if the manual pumping doesn't begin until she has fallen in the 40-50th %,  she rapidly drops into the 20's before any climbing back up begins.  I've seen that happen a few times this day and I couldn't breathe... Like time and life itself was frozen until my baby improved.  The cardiologist spent a couple hours with Cecilia and I talking about her medicine tweaks and trying to find the balance that works best for Cecilia.  They said everytime they move her, do xrays or anything, she de-sats.  Basically she was getting pissed off.  I would be too, but I told her to stop giving them so much drama, and her eyes fluttered.  She was very patient and explained everything to me with drawings which helped me absorb the info a lot.  There are 2 shunt versions of the Norwood, and she suspects he may want to do the Sano shunt.  We talked about how her aorta was almost non existent (that goes the same for the Left Ventricle, however the ventricle plays no part in the operation...there is no creating a left ventricle for her ever), and how in this surgery the Doctor reconstructs the aorta completely to create one (Neoaorta) with using her beautiful main Pulmonary Artery.  There will be a hole between the atriums making it work as one large Atrium, and now that's technically a 2 chambered heart.   Cecilia's oxygen was finally steady in the 80's.

this is her medicines that they are tweaking. They also added something (nitrogen?) to her oxygen to help her.
 There was 7 babies total in this NICU room, and it gets very loud with all of the beeping and crying.  I try to wind up her music toy when it would get hectic.  I hope she likes it.   The Neonatologist and Cardiologist approached me and said they would like to move Cecilia to the PICU today so that the nurses there can get to know her, they will be taking care of her post op.  I was really thrilled about this so she gets Cardiac RNs, a room less chaotic so hopefully she will be more relaxed.  I went to get some breakfast and call daddy to give him the update.

On my way back up, security informed me I had a visitor.  I got close with the fetal cardiologist, and she got me in contact with another heart mommy named Jen.  Jen and I have been emailing back and forth for a couple months.  This is the first time we have met.  She brought us some gifts.  For Cecilia, a security blanket.  I was just thinking about getting one of those, and it is perfect ♥.  She got us a lucky bamboo which was very sweet.  And a card, that just brought me to tears...  We sat and talked for a while.  Her son Thaddeus had his TOF repair at 12 weeks old.  He is about 8 or 9 months old now, and just beautiful.  She told me she had a random encounter with an adult CHD woman.  This woman said that when she was a baby her mom wrote her a letter every day when she was in the hospital, and gave the letters to her on her 16th birthday.  That was heartwarming, and I plan to do that too now.  I'm so thankful for her to surprise visit me...  the support of other heart moms is so comforting and these are bonds I will cherish.

When I returned to Cecilia her sats were back in the mid 90's.  It was just a really crappy feeling to see her struggling to meet the goal despite all of the things they have been trying to do.  The pulse ox, her own personal attached night light, will cause me more anxiety for a few more years to come...
The NICU nurse asked me if I wanted to help her wash Cecilia's hair.  That was just the greatest feeling!  She did not de-sat at all, so that was even better.  I know I wont be able to participate in her care for a long time, and its depressing.  I used to refuse letting my baby go to the nursery on my other kids because I just loved that immediate bonding.  I never knew how deeply I could appreciate something so simple.  After washing her hair, I wrote her her first letter.  It was emotional but also powerful and God willing she will read it.

I stared at her chest, making sure she was breathing for over an hour.  The world feels like it is collapsing around me.  Karl kept asking me when I was coming home to give him a turn.  It's been really hard for us to take turns because we need each others support when we are there with her, and because we both can not stand being away from her.  I really wanted to stay so I could see the PICU, but then there are moments when I just have to get out of there because of my anxiety.  This was one of those moments. 

When Karl got there she was being transferred to the PICU and they were talking to him about a blood transfusion.  He went hysterical on them and really needed me to be there with him, so I had my sister Emily come over to be with the kids.  He came back home to get me so that we would only pay for parking on 1 vehicle.  By the time we returned he was much more relaxed about the blood transfusion.  I think we both get very stressed when unexpected things are introduced to her care.  I was at ease about the blood transfusion because after reading so many blogs I knew that it is so common and could really help her and make her feel better.   Karl had not known that this could be needed for her so he was confused, scared, and stressed out.  They decided to hold off on the transfusion and wait to see what her count was by morning.  Her PICU room is private.  There is room for another patient in it, but she had it all to herself.  No more chaos of 7 critically sick babies, and the only beeping alarm machines we will hear will be our own daughters.  The nurses there are great.  They are already attached to her just like us.  One of Karls best friends came to visit him and that was great for him.  He needed a moment to just be able to talk about things.  During that time, I was getting to know Cecilia's new nurse, and Cecilia actually opened her eyes and stared at me for about 5 minutes!!  I cried my eyes out and gave her a pep talk.  The heart community refers to their kids as ♥ Warriors.  So I told her about herself as a warrior.  She has the Vinje blood, Viking warrior of her Norwegian ancestors, and love from her fellow heart warriors, strengthening her for battle.  You got this princess, you are gonna survive and thrive.  Here's some pics of her new room, the nurse was still setting things up the way she wanted them to be when we got there.  Including changing all of her med lines:


We have to wear gowns and gloves until isolation period is cleared.  The isolation was lifted tonight before we left.

Your Daddy loves you so much and is on top of making sure you are being taken care of like a VIP  that you are!

Everytime something alarms, we stop breathing.  I'm sure by the time of discharge we will get used to it, but right now it's scary and all new for us.





 We went home around midnight.  We felt much better now that she has Cardiac RN's, and she was already doing so much better here.  Every doctor and nurse we met so far were all awesome.

The next morning Karl went by himself and I stayed home with the girls.  Cecilia was getting her blood transfusion.  Our goal was he would come get me around 3, but around noon decided I needed to come in.  They were explaining a lot of important things about surgery day and pre-op stuff that Karl was confused about and its stuff I need to hear too.  Plus Cecilia was having trouble with her blood pressure.  After her surgery she will have tubes to drain stuff.  They did a little of the pre-op stuff, as putting in some IV lines they need for surgery into her wrists.  Tomorrow morning the Anesthesiologist will have to give her a little bit of a hair cut to place a line on her scalp as well.  They will also be replacing her breathing tube and it will no longer be in her mouth.



 

Cecilia got some visitors in the evening.  She got to meet Grandpa, who gives the best Christmas presents ever!  Another Grandma, and Uncle Angelo and Aunt Olesia.  The nurse took the time to tell my father in law a lot about HLHS.  I really appreciate that because it is so much info for Karl and I to absorb we dont always relay what we are told back correctly.  Later on she met her other grandma (my mom) who is a radiation oncology RN at the same hospital.  The surgeon was supposed to come meet with us at 5:30.  That turned into 7, which ultimately ended up being after 8.  When he came in we tried to be friendly but the truth is we had a lot we needed to air out.  He could tell this and encouraged us to express ourselves.... after we got all of that out we were able to talk about the surgery.  We signed our consent form, and then he said he is going to go talk to the charge nurse and request that we be able to hold Cecilia since she is doing good right now.  Karl opted out, he just did not feel it was safe with the breathing tube and all her lines, but it was something I needed to do. 




Daddy was about to blink, but only pic of him next to us

"There will be no sunlight- if I lose you baby...There'll be no clear skies- if I lose you baby...  Just like the clouds- my eyes will do the same- if you walk away-  everyday it will rain, rain, rain"