Monday, January 3, 2011

figuring out our new "normal"

Adeline continues to heal.  She is absolutely amazing. The swelling in her head and face has almost all disappeared.  It's hard to know what is still swelling and what is Adeline.  The doctors anticipated a lot of bruising, but she really doesn't have much bruising at all.  She has dark circles under her big blue eyes, I think a combination of bruising and also a residual of the swelling.  Her head is a little discolored, but nothing like I had envisioned. And she laughed a couple of times today.  How long before I shake the urge to take her picture or make a video every time she laughs or talks or smiles? Or just looks cute? (Thank God my family has unlimited picture mail!) It feels like when we brought the kids from the hospital as newborns. Her days consist of lots of cuddling, a little eating, a little playing, and some sleeping.  She does pretty good until the Lortab starts wearing off, but each dose seemed to give a longer period of relief today. She hasn't been eating much, I am so grateful that she had all of that extra "tank" prior to surgery. She pretty much always wants to be carried or held, and insists that someone is in the same room with her at all times. It's easier to tote a newborn around.  She just knows my arms could use some toning!  And she's too smart.  She is always looking around, making sure that someone is in the room with her if she isn't being held.  If she was any other 7 month old, I'd probably just let her cry, but I know that when she gets so upset her head hurts her even more.  So my house will continue to gather clutter and the dust will accumulate.  A friend stopped by tonight and told me to remember that someday she won't want to be cuddled or held. I was given that line many times prior to Adeline's surgery and would pretty much just shrug it off.  But tonight I didn't.  Because I am so thankful that Adeline is healthy enough to want to be held and loved and spoiled.  And I am thankful that I am able to stay home with her this week and give her what she needs.  When we were in the hospital Aaron and I noticed that there were a few babies that never had anyone (except the nurses) with them.  It broke our hearts to think that a parent would choose not to spend every second of every day with their sick child.  We finally asked Adeline's nurse about it.  She said that many times it was because the parent had to work to keep their insurance, or to simply make money so the child could continue to receive medical care.  That had never even crossed my mind.  And it broke my heart. Of course, she said that there were also some less noble reasons for a baby to be left alone.  I am grateful that those babies have the opportunity to receive care at such a wonderful hospital, and receive love from the nurses.

Nile has become pretty needy too.  Today his butt hurt, his foot hurt, his neck hurt, his lips hurt, and his finger hurt...all within about 15 minutes.  Oh, and that spot between your upper lip and your nose...that REALLY hurt.  So I gave lots of kisses.  And chapstick.  Chapstick was the cure-all today.  I think we may have overachieved in our efforts to make him comfortable with Adeline's hospital stay and "owies".  He now talks about when he is sick and has to go to the hospital... he can't wait to play in the big play room that all of the sick kids get to play in. And, understandably, he is under the impression that he will get the attention he is starved for if he is sick too.  And he wants to loved on and cuddled.  And never out of sight.  I have to admit Aaron and I are probably not always as patient with him as we need to be, but where do you draw the line?  Should you give a 4 year old a time out or send him to his room because he is scared and anxious and just having a really bad day?  Heck, we took away his light sabers!...just because his little sister is sick!
So today I thank God for giving me time...I just need to work on the patience part.

1 comment:

  1. I just read your blog for the first time today as my mother (who lives in Sioux City) contacted me about the KC benefit they are having for your daughter at Church. I currently live in Austin, TX and have a 3year old who also had sagital craniosynostosis. I completely understand what you went through with your daughter, especially the part about kissing a round head. :-) I am happy to hear that she is on the mend and that her surgery went well.
    Many Blessings,