We Have a New Daughter!

February 24th, 2011

Isn’t she cute?  Okay, so maybe Miah isn’t a new DAUGHTER, but she certainly has a new LOOK.

We were tired of the tangles.  Miah has been needing a haircut for a while, but we wanted to be sure it was long enough for her to donate to Locks of Love.  We are so proud of her for being willing to do this.

Before…

Making the ponytails…

Snip, snip, and away they go…

What do you think?

I think I like it.

Ami watched with fascination…and admired her own reflection in the mirrors.

Here’s our new girl, before sending her locks off so another child can have hair once again.

Posted in Life, Miah | 5 Comments »

What Does Recovery Look Like?

February 22nd, 2011

From seeing Ami two days after surgery ↑ someone who didn’t know better might not realize all she is going through.  She actually does pretty well when we stay on top of her medications so she doesn’t feel the pain.  For the first couple days this meant giving meds every 2 or 4 hours round the clock.  Now that we are a few days past surgery, she doesn’t need them as frequently.  She also gets ear drops 3 times a day for a week.  Ami doesn’t enjoy either procedure.  She has been more irritable and fussy, especially right after waking up or when meds are due, but overall, she’s really doing well.  (The band aid is to keep the sun off the scar on her lip.)

3 Days Post-Op

Thankfully eating hasn’t been a problem.  Some kids will refuse food/drink (either from pain or because the mouth feels so different), but supposedly most are happy to get food in their bellies.  While in the hospital, I asked Ami if she wanted applesauce, and she said, “Yes.”  After one bite she didn’t want any more (she was eating pudding, yogurt, smoothie, etc.)  After we were home she again refused applesauce.  I gave her a bite anyway.  Then she wanted more.  I realized it was because she’s used to my homemade applesauce, and the one at the hospital just didn’t taste right!

Letting Mommy sleep in

For food, Ami is restricted to a soft, non-mechanical diet (pretty much baby food consistency) for 4 weeks.  Some more conservative doctors say liquid only for the first week.  So we have been careful.  We don’t want anything to poke or to get stuck in the sutures and compromise healing.  We also don’t want food that may stick there so that she is exploring the area with her tongue.  She’s already gotten a sore on the tip of her tongue (it’s much better today) probably from running it along the stitches in the gum cleft, as I know she has a habit of putting her tongue there.  So far she has been enjoying pediasure, pudding, yogurt, blended soups,  cream of wheat, apple/pear sauce, and fruit and yogurt smoothies.  We’ll probably start expanding her diet soon to include puréed whatever we are having.  After eating, we give her water to clean any left over food from her mouth.  Although she knows the rest of us are eating different food, she hasn’t complained too much.  Yet.  She has specifically asked for tomatoes, orange sections, and toast.  And we have to say, “No.”  (She’s supposed to avoid acidic, anyway.)  Miah has foregone her regular snacks and also has yogurt or smoothies, so that helps.

5 Days Post-Op

Probably harder to handle than what she is eating, is how she is eating.  Ami is not allowed to feed herself.  NO objects are to go in her mouth.  Either I feed her with the side of a large spoon, or she drinks from an open cup.  She often asks to feed herself, but it is not an option for little miss independent.  We just can’t take any chances of injuring her fragile palate.  The goal is not to develop any fistulas (openings – back through the palate).  Some patients will have this problem, and some won’t.  We’re hoping and praying that Ami will have complete healing.

Reading with Grandma

In addition to managing pain and changing her diet, Ami must wear arm restraints (also for 4 weeks).  Specifically at night.  We want to be sure she doesn’t put her hands, fingers in her mouth while sleeping.  Thankfully she isn’t a finger/thumb sucker, or sleeping would be more difficult.  During the day, if we are watching her, the “no-no’s” can be removed.  The key is, if we are watching her.  Ami is not one to put things in her mouth, generally, but you just never know with a 28 month old.  She knows she is not supposed to put her hands up near her face, so she does not, if we are watching her.  But she has the personality of doing things her way, and if she doesn’t think we are watching her, she’ll do whatever she wants…So, she does wear the “no-no’s” throughout much of the day as well.  Just so we don’t have to follow her around and monitor her quite so closely.

No-no's from the hospital

The arm restraints were a big problem the first couple nights.  Ami hugs her teddy bear for comfort, and she really couldn’t do that with the “no-no’s” on.  She also sleeps on her stomach and side, and she couldn’t roll over with these foreign straight appendages.  After getting home, and seeing Ami actually move around with them on, we realized they were just too big for her!  Fortunately, I knew that “G” (who had this surgery just recently, and lives nearby) was done with her “no-no’s”.  So I gave her Mom a call, and she delivered us two sets of a smaller size, freshly laundered.  What a blessing!  Ami was actually willing to put them on, because she has arm movement with these, she can still play, and hug her stuffed animals, and scratch her nose with her arm if she has an itch.  They just prevent her from reaching her face with her hands.

Using the borrowed no-no's


Our Time In Seattle

February 20th, 2011

Valentine’s Day this year kind of got lost in all the surgery prep and the early morning drive to Seattle.  But we did exchange cards, and chocolate, and Miah made me a lovely card in the hospital play room while Ami had appointments.  After those were done and some of us had napped, we went to the Old Spaghetti Fact*ry for dinner.  This was the second time there for the girls, the first being the day before Ami’s lip repair!  Poor girl probably won’t want to visit there again, now, if it always means surgery the next day!  Thank you Papa and Nana for the nice evening, and full bellies.

Yes, Miah finally reached 40#, which is great.  Booster seats are much easier than car seats.

We had a leisurely morning in the hotel before heading off to surgery.  Grandparents are wonderful for “spoiling” our girls.  Thank you, Papa, for the climbing bears, and Nana, for the kimono.

While we were at the hospital, Papa and Nana took Miah to the Children’s Museum.  It looks like they had a good time.  Miah also came home with new goodies in her bag, that she has been sharing with her sister.

And they both got new stuffed animals, which they love.  It was interesting watching Miah when they first came into the hospital room the day after surgery.  She made no recognition of Mommy or Daddy, but made a bee-line straight to Ami sleeping in the crib.  We couldn’t ask for a more devoted big sister.  Ami is blessed to have her.  And Miah is blessed to have Ami.

Ami’s Palate Surgery

February 19th, 2011

In the waiting room before surgery
In the waiting room before surgery

On surgery day we left Miah in the hotel with Nana and Papa (such a relief to have you there!)  We were called back about 11:30 am, and spent until 1:15 talking with nurses, doctors, anesthesiologists, etc, and prepping for surgery.

2011.cpsurgeryprep

Ami was definitely not happy about the situation.  She’d been through these procedures only four months ago!  After the “happy juice” kicked in, the wait was much more animated.

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We got an update about 1:30 that her ear tubes were in, and the first procedure had gone fine.  We got another update about 2 1/2 hours later saying that all was going well, but it would still be awhile.  Overall, Ami’s surgery lasted about 5 1/2 hours.  That’s a long time for parents to wait!  Then I think about the surgeons.  That’s a long time to be doing such intricate work!  God has truly gifted such individuals with amazing talents.  We are blessed to have such a great surgeon for Ami.

Cleft palate before surgery
Ami’s cleft in her palate before surgery

Ami had a complete cleft palate.  This was her lip, the gumline (with one baby tooth missing), and both the hard and soft palate, running from front to back, with the uvula split in two.  So you can see how eating, drinking, and speaking would all be affected.  At her pre-op appointment, the doctor explained how he would be repairing the palate.

Diagram of palate repair
Diagram of proposed palate repair

He would be making cuts on both sides to loosen tissue to close the opening.  This area is now raw, with some packing material, and will regenerate tissue to fill in.  (It just amazes me how God created us to heal!)  Her surgeon spent most of his time repositioning and attaching the muscles.  They had been running parallel to the cleft, and are now curved over the palate and attached as they should be.  The stitches are dissolvable.  Her mouth must feel so foreign to her right now!

Ami's palate right now
Ami’s palate right now

After surgery (between 6:30 and 7:00 pm), the doctor came and talked with us, and we had to wait 2 more hours while they monitored Ami in recovery.  They brought her to her room about 9 pm.  (Thankfully they let extended family stay beyond visiting hours, and Miah’s bedtime, to see her.)  I spent the night with her intermittently holding her, and letting her sleep in the hospital crib.  She woke frequently, but actually slept more this time than she did the night following her lip repair.  (I had a couple naps:  1/2 hr. and 1 hr.)  Of course the night was also interrupted with nurses checking her vitals, giving her medication, and with the snoring of the other young patient’s parent on the other side of the curtain!

An attempt at a smile

An attempt at a smile

The next morning Ami was asking to eat.  We fed her juice with a syringe (her tongue was still “tied” at that point), and she had some ice-cream smoothie.  We were so happy to see her drink and eat, because these are requirements before you can be discharged.  Later in the day, she had a cup of water in her hands, and after a couple swallows she had told me she was “all done”.  It just so happened that the surgeon came by to check on her right then.  (He had told us that she needs to drink water every time after eating to keep the palate clean.)  As he was talking to us, Ami proceeded to drink the rest of her water.  I think she surprised everyone in the room.  ”I guess the white coats really work!” was the doctor’s response.  Ami was discharged about 5 pm, and we made the long trip home.

Feeling better

Feeling better

While She’s In Surgery . . .

February 15th, 2011

2011.2.4

Ami has been “sleeping” for the past three hours, and is expected to be in surgery for about another hour and a half.  So we still have some waiting time.  I might as well post some pictures from the last couple weeks.  Warren got some great shots of the neighbor’s horses the other day.

2011.2.5horses

The girls love watching them out the window…

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Seeing them run down the hill…

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The snowy mountains make a spectacular backdrop.  We’ve also had some other four-legged critters to watch.

2011.2.10deer

These guys were a little closer than the horses.  They were watching us, too, and would lay their ears back when they heard the camera click . . . through the glass.  These were taken on separate mornings.  We probably saw them and/or their buddies five out of the last seven days.

2011.2.12deer

We are so thankful for Nana and Papa right now, taking care of Big sister, Miah, while we wait for Ami to get out of surgery.  Both of the girls have done very well the last couple days.  I know all the unknown is difficult for them.

2011.2.5DM

Ami did so well in her four hours of 7 pre-op appointments yesterday.  She seemed to kind of know what was going on this time around.  She was calm, but wary, and only cried when they were cleaning her ears.  I got her up at 4am to feed her, then she had some water at 8, and then nothing more in the mouth until surgery.  It really helped her get through the morning.  She never complained about wanting food or drink at all.  She had also been prepped for this (books we read and talked about), and I told her this morning, also that it would be her last drink until after surgery.  You never know how much a two-year-old understands.  We probably don’t give them as much credit as they deserve.

2011.2.10DA

Today she did much better (than 4 months ago), going back to the “blue zone”, and the two hour wait there meeting with the nurses, anesthesiologists, etc.  She cried with the blood pressure cuff “hug”, but did well other than that.  Then they gave her Versed (happy juice) this time, which made her relaxed and loopy rather than anxious.  When I suited up and took her back to the OR (at 1:15pm) she never cried at all, but just looked around at everyone as they gave her the gas and she went to sleep.  I’m now sold on the “happy juice.”  I know it will be a different story when we see her next.  Poor little gal.  But it is all for the best, and we are very happy and confident in her surgeon.  Now praying that recovery will go well…