I dont know what the plan is going to be for Cecilia now. She was having a weight gain set back, but I think that it has gotten better now that they changed her formula to higher calories, and she was getting some fats through IV. The doctor from last night said we really have to look at it from a weekly perspective which makes sense.
I feel like it is the hardest thing to do to
give all of my energy to God and trust
that there will be a day when we (my husband and kids) can all be together. That her story
will be one of hope and inspiration and NOT one of tragedy. The support
of moms that have been where I am helps me through but with knowing
such a compassionate community also comes knowing that it all does not always end with
shiny rainbows and happy endings. As at least 2 heart moms have had to say
good bye to their babies in the past week, my heart breaks. Please say a prayer for new Angels- Pierce and
Layla, and their family who are living every parents worst nightmare,
because of the existence of Congenital Heart Defects.
It is only the 2nd day of Karl being back at work and it is harder than I envisioned. I feel sick to my stomach all day long when neither of us are there. And there were days before he went back to work that we couldn't make it in, and it really bothered me...but now it makes me even more anxious because I know this is our new permanent situation. I feel like I am finally starting to bond with her and now I'm letting her down. She is less critical, so her nurses are not as attentive. I guess that is a good thing, but for me it is making me so sad. I wish she was home so I could give her attention. I really thought that she would be in an interstage program by this time. I desperately tried to prepare myself by learning hundred of other peoples Norwood experience when I was pregnant, so I could be ready for anything. Because I can not fall apart when I have everyone to take care of. I just really thought she would be home by this stage, because that is usually the case unless the baby is seriously critical...and I dont know how to accept that it is probably not going to happen. I dont know how I am going to make it through the next unknown amount of time with my family separated. I dont know what to do to make this situation easier either. No matter what happens or what I could do the majority of the time she will be without her parents from this point forward until her discharge. I feel helpless and worried about how unfair this is to her. I hate it. She needs us.
Last night I went in as soon as Karl got off work. She turned 6 weeks old yesterday. Cecilia was upset and grumpy, as she has been most of the week. It is like a diva cry, because there are no tears. She is just SO pissed off and complaining. I tell her, "I know, tell me all about it," and I think I understand why she is so unhappy. Usually after a short time, Karl or I can comfort her. But it takes a long time. It can be hard since she is hooked up to Ivs and monitors, you just cant walk around with her at all. We are just very limited on what we can do with all of our experience as parents and comforting our newborns. I resent that I can't do for her what I have done with all of our children. And then I feel even worse for being upset because I know that things could be worse. I know that.
Last night I gave Cecilia her bath because her nurse was busy with another patient, and I very much enjoyed it. ♥ It is also the first time I put clothes on her completely by myself. This has been something that I have been very uncomfortable with. I don't even like it when other people put clothes on her :). Every time I think about her getting clothes on I think about them cutting her bone for the surgery. And I cringe. It took me about 15 minutes to get her dressed because I was so nervous and cautious. But she was happy the whole time and it made me want to work through my anxiety. I swaddled her, and held her then fixed her bed up pretty for the night. She went to sleep not too long after I tucked her into her "nest". I couldn't sleep after I came home. I thought if she wakes back up and wants attention but her nurse might not know, and what if hours go by and nobody knows. You can't hear her cry from the hallway. That reminds me, as I have suspected for weeks, ENT confirmed one of vocal cords is damaged. It's called Left Vocal Cord Paralysis. In most cases it heals by itself over time, and I believe that will be the case for her, because her cry has been getting just slightly stronger recently. I brought in some more of her things since no point in keeping them nice and new for when she comes home... I no longer have expectations that we will be adding interstage life at home to our personal journey with HLHS. It makes me feel defeated.
Pics of Cecilia from last night (To me she looks GREAT, and maybe that is adding onto my stress and difficulty of understanding + accepting why is it she cant come home interstage.)
Being on this side of the room is much better, more room and just more space to put all of our crap lol. They also changed her crib/bed. I like this one better it is a lot easier to adjust the sides. Her window looks out into the Atrium which is nicer.
I feel so depressed leaving her in there alone. So I had an idea to make her a "Heart Friends" scrapbook. Making it will help me cope with the fact that I can't be there. And maybe later on in life if she ever feels different or alone for any reason, the book will remind her that she is not alone at all. I am going to just add short bios and a pic of all of the little warriors that fight/fought so hard just like her, with the permission of the parents of course. Several have already sent me a picture and what they would like me to write about their fighter. ♥ I hope Cecilia will love it one day!