Thursday, March 27, 2014

One Week Post Surgery - Coping

Maggie's situation is fairly uncommon here. Most cleft lip and palate babies born here in the US have their surgeries as much younger babies.  While our hospital is known for helping adopted children with this condition, but they're still few and far between. They said they have one every few months.  That left us with some tricky things to figure out, as it's not very common to have a toddler recovering from this type of surgery.  Her nose stent just will not stay in. She can blow it out, sneeze it out, rub her face on our chest or her bed and knock it out. We've tried several different types of medical tape, I think we may have finally figured out that plain old band-aids work best.  But she has to wear it for a couple months and once her arms are out of the arm bands, I don't know how she'll keep it in.

She is also able to pull her arms right out of the arm bands. She'll pull an arm out and then hold is up to us as if she was saying, see what I can do?  It's stressful to constantly be making sure they stayed on, even in the middle of the night.  We've had to get creative; currently her arm bands are duck taped to the cuffs of her PJ arms. We also had to safety pin the neck hole so it's a bit smaller, otherwise she can wiggle her arm out of it.  So she is wearing the same nasty PJs every night and every naptime. For the most part when she's awake, we take off the PJ/arm band outfit and just watch her like a hawk to make sure she's not bothering her mouth.

Feeding her is very tricky. She cannot have anything hard in her mouth past her gumline... so no spoons or forks, no bottles, no regular sippy cups, no sucking.  So we've been getting her to drink with a syringe.  It's a very slow process and we still have to be very careful that she doesn't get the syringe far into her mouth where it could bump her palate.  It's best to recline her back and just squirt the liquid into her mouth, but it takes forever to get in just a few ounces.  Thankfully as of yesterday she started drinking from a regular open top cup as well.  She's also liking baby food that comes in the squeezy packets - hallelujah for those!   We still have to be careful with the tip, but she has learned that if we recline her back, she can just open her mouth and we'll squirt it in.  She's allowed to have soft foods; yesterday she finally started trying some. She ate some soft macaroni, cooked veggies, etc.

Sleep has been difficult due to the terrible arm bands. She just can't get comfortable. Some nights and naps she sleeps well, other times she wakes a lot.  They told us the best place for her is in her own bed, so we continue to try to comfort her as best as we can.

The last week has been very trying for all of us.  For Maggie most of all, of course. She continues to not be in too much pain, and we give her Tylenol as needed.  But she's so uncomfortable and frustrated and tired and hungry from everything being so difficult.  She's had to relearn the way she eats, plays and sleeps.  She requires a lot of care. If she's awake, I'm either holding her and on the floor with her watching her every move.  These 2-3 weeks are crucial that she doesn't bump her mouth.  So regular life is on hold while we just get her through this time.  Not an easy task to let go of regular life when we have 3 other kiddos that need time, care and attention. Thankfully their grandparents are chipping in and helping out tremendously, watching them for us so we can care for Mags.  I cannot imagine how difficult recovery must be for kids like Maggie and so many others who have surgeries in China without a family to care for them after.

Maggie had to return to the hospital yesterday for a brief surgery to remove some sutures. Although it was a very quick procedure, she couldn't eat all morning and afternoon, and then there was another delay in getting started on time.  She was miserable waiting there at the hospital.  Thankfully the surgeon said everything is healing well! He also cleaned up a lot of the gross gunk around her nose and mouth, so she's looking much better!  I had to put my foot down while there; they told me they didn't have a room available for me to be there to hold her while she was put to sleep like last time; that was so not okay with me. She's so afraid of medical people and no way was I handing her over to a stranger while she was awake. They saw my tears and quickly made it happen for us. I'm grateful for that; I held her on my chest while she drifted off to sleep.  It was great to bust her out of there right away instead of having to stay.  We're very hopeful that was her last surgery for a very long time.

I have to give a huge shout out to our big kids.  It really hasn't been that long (4 months) since we left them here for 17 days while we were in China. Now they're being shuffled around while we once again focus on Maggie. It's hard on them; Sam told me yesterday that he's tired of other people taking care of him.  Ugh.  So hard to hear.  They're on spring break this week, so instead of them being gone for a good part of the day at school, we're having to make arrangements for help for most of the time that Jeremy is gone to work, as I can't easily care for all 4 of them by myself with Maggie in her condition.  Thankfully Jer took today and tomorrow off work so we can do some normal family things and work together to keep an eye on Maggie.

Anyway, we'll get there. We are muddling through. Today was a much better day. We're taking a break from her nose stent, it was irritating her nostrils, and she ate like a pig after not being able to eat before her surgery yesterday.  She's physically doing great as far as how she's recovering.  Although her surgery was more extensive than we thought it would be, it was also more successful than we had hoped.  And we know that it won't be long before we're looking back on this time!

Love this face.

And this one.

And this one.

Lil' Houdini with her arm out of her arm band, PJs and extra shirt.

Happy Birthday to Daddy!

That cupcake looks good Dad!

 A little taste.

3 days post surgery.  
Bedtime Routine... she's starting to hate her changing table where it all takes place.


She knows what's coming...

Arm Bands on....

Ear drops in...

Nose stent in...

A little formula and ready for bed.

4 days after surgery. She has a black eye from all the work they did 
and lots of oozy yuck around her nose and mouth.

Her first real meal... she gobbled it up!

5 days after surgery.

 At the hospital waiting for suture removal surgery, hanging with Grandpa.

6 days post-op.

One week post-op!!  (taking a break from the nose stent)

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