Monday, May 24, 2010

Saturday, May 22, 2010

Surgery results

We made it through Friday.  Getting up at 4am was brutal, especially since Chloe didn’t sleep well and Sonny finally put her in bed with us around 3:30am.  I think Sonny and I each got about 2.5 hours of sleep.  But, this post isn’t about us.  :) 

Getting to the hospital and getting checked in was uneventful.  Chloe’s procedure was ‘scheduled’ for 7:30am.  They called us back to prep her at 7:45am.  There was a slight problem with getting the hearing test ordered and approved – but again they didn’t know how persistent I was.   In the end, Chloe had the hearing test. 

I was also allowed to put on a gown and hair net so I could take Chloe to the operating room.  Everyone at the DMC is very polite – like they are genuinely happy to be there.   Well, almost everyone.   One nurse or orderly (we’re not sure) stood around doing nothing and being in everyone’s way, and even said “that’s not my job” a few times while in our presence.   I just love that phrase.   For the sake of this post, I’ll call her “Grouchy”.  When I brought Chloe into the operating room, Grouchy told me to lay Chloe on the operating table so they could put the mask on her to knock her out.  Chloe wasn’t having any of that.  I said it wasn’t going to happen that way and that I was going to hold her until she was out.  They complied to my ‘request’.  Then Chloe wasn’t going to let Grouchy hold the mask either.  In the end I did that too.  So I actually held Chloe in my arms while forcing the mask over her little face.  She wasn’t pleased with me, but within 4 or 5 breaths she was out.  I then laid her in the table, removed the mask from her face and kissed her goodbye.  I then made the nice RN promise that they would be gentle with Chloe and take very good care of her.  Then I was escorted back to the pre-op area where Sonny and Cassie waited for me.  We checked in at the surgical reception area and got a pager so we could go get breakfast.  Poor Cassie had been up since 5:15am with nothing to eat or drink.  At this point, she kept asking for Chloe, which she pronounces as “Eee”.  We has been telling Cassie that the doctors were going to be fixing Chloe’s ears for days.  We had been telling Chloe too but she had no idea what we were talking about.  So we explained the best we could that Chloe was safe and OK and that the doctor was fixing her ears.  We only had to tell Cassie this about 10 – 15 times during the day.  But I do think she understood – at least as well as a 2 year old can. 

We were back from a quick breakfast in the cafeteria for about 5 minutes when the ENT called to say that Chloe’s tubes were in.  He also said that she had fluid in both ears but that everything else looked good.  We now have antibiotic drops to put in her ears twice a day for 10 days and we need to go back and see the ENT in 4 weeks.

About 40 minutes later the Dentist came out to see us.  They filled not one but two cavities that Chloe had.  Both in her upper 1-year molars.  They also sealed the 4 molars that she has, cleaned her teeth and took x-rays for her front 4 teeth.  It looks like her 4 permanent front teeth are there.  The had a hard time getting good x-rays because of the intubation tube in her nose.   The dentist also said that Chloe will be needing a lot of dental and mouth work as she gets older and grows.  Her palate is repaired but won’t grow with the rest of her mouth.  As for her tiny little mouth – it’s because of the restrictions of her palate and lip repair.  Once she gets a palate expander (an orthodontic device) during her teenage years that should get better.  The craniofacial surgeon will be the one who determines the timeline of all these corrections.  We’ll be seeing her once a year.  Other that that, Chloe needs to be seen by the dentist in one week to make sure everything looks ok.

Last up, the hearing test was started at 9:30am.  Chloe can hear now.  Her hearing is good.  Not great – but good.  To mama and dada that is wonderful news!!!!  Chloe doesn’t have very good low-frequency hearing (i.e. deep base tones).  This is a normal side effect when tubes are in place.  Once the tubes are removed that hearing should come back.  Chloe also hears better in her right ear than in her left.  I will ask more questions about her hearing when we see the ENT in 4 weeks and when we go for her speech evaluation.  As for now – “good hearing” is great news. 

About 20 minutes later they called me back to recovery, as Chloe was starting to wake up.  They brought me to a tiny room with a recliner and said “wait here”.  About 3 minutes later a nurse brought me my very tired, not so with it, baby girl.  She curled up in my arms just like she was before we started with the mask in the operating room.  I don’t think she knew she had ever left my arms.  After a bottle of juice, a visit from a couple of doctors and nurses, and 40 minutes of time, we were cleared to go home.  By this point Cassie was sound asleep in the stroller – that is until she heard and saw her sister.   We left valet parking at 11:58am. 

It’s now Saturday night and Chloe is a different kid.  She can hear, she is cruising around the house like the toddler she is.  She’s not falling at all and she is climbing with no problems at all.  She’s also been very vocal since we got home.  She likes the sound of her voice.  She’s laughing and smiling more too.  And she slept for 8 straight hours last night and took a 3 hour nap today.  Life is good.  And my baby can hear. 

This might sound strange but she looks different now.  Not just happier but different.  I swear her face has changed shape overnight.  Sonny noticed it too.   Really.  And her eyes sparkle now.  And as weird as this sounds, she’s more beautiful looking than she was at 8am Friday morning.  Yesterday was the start of a new chapter for us all.  And this one will end with butterflies and rainbows. 

And one last thing.  I promise to post pictures soon.  Promise.

Thursday, May 20, 2010

Early morning Friday

Just a quick update. Tomorrow we need to be at Children's Hospital at 6am. Chloe's procedures -- ear tubes, hearing test, one filling, and full mouth x-rays -- start at 7:30am. I'm hoping to be home by noon. But then again, I have no idea what to expect. Right now I'm just praying that my baby girl sleeps tonight since tomorrow will be a long stressful day for her. She hasn't been sleeping well or taking afternoon naps lately. She's been very clingy, whiny, and tugs at her ears all the time. She resists naps like the plague, even though she is clearly very tired. Everyone tells us that we will notice an immediate improvement in her hearing, balance, and mood. We are praying for just that.

Thursday, May 06, 2010

Cleft team evaluations

So today was the big day we have been waiting for. Our day started with the alarm going off at 5:30am. That would be bad enough if Chloe hadn’t been up 8 times during the night, but she was. I think there were 5 diaper changes too and once having her in bed with us. But at least we knew today we’d be able to get some answers on why our baby girl was having so many problems with her little ears.

After our appointment and a quick trip to the pharmacy for an RX, I spent about 2 hours on the phone with different departments at Children’s Hospital making sure they were going to do everything they said they were going to for Chloe. Let’s just say that the ENT group doesn’t feel the need to cooperate with the rest of the groups. Little did they know who they were dealing with. Me. In the end, we all agreed that my way and wishes will be easiest on everyone. And the best for Chloe. So beside the drama and aggrevation scheduling everything went well. Here’s the scoop on the girls.

Cassie’s evaluation:

Teeth look great, no cavities either. The dentist believes that Cassie shouldn’t have any issues with her teeth as she grows. Her eye tooth on the top left – where her cleft lip was – is sideways but that’s very minor. Her bite is also very good. We are still waiting on Cassie’s 2-year molars to start coming in – but we still have lots of time for that to happen. We also scheduled a cleaning for Cassie at the dentist’s office around the corner from the hospital for early June. It’s more to get her started on learning to trust the dentist and let them brush her teeth. I wish them all the luck with that one. :)

Cassie’s hearing is excellent, no fluid or pressure in her ears.

We do need to schedule a speech evaluation for Cassie. The woman in charge of that will be calling me.

The cleft surgeon wants to see Cassie in 6-months to check on how her lip is growing to determine if we might do her lip revision early. She sometimes bites her lip on that side because it’s a little thick on the inside. Still very minor issues there too. I made that appointment for early November.

This is pretty much what we expected with Cassie. So there were no surprises.

Chloe’s evaluation:

Chloe has one cavity in a bottom 1-year molar. We weren’t surprised at all on this as Chloe came to us eating hard candy and in all the update pictures we got of Chloe while waiting for her she was eating snacks. I’m just thankful it was only one cavity. She has a split in her gum – near the cleft – and an eye tooth is coming in there. The dentist can feel the two bottom eye teeth, so other than waiting on her 2-year molars there’s no concern right now – just watch and wait. The dentist will be able to fill her cavity when her ear tubes are done so there will be less trauma for her.

The next stop was for a hearing check. I already knew Chloe was having trouble hearing. Between the fluid issues, ear infections, being a cleft baby, and me having to speak loudly to her sometimes for her to hear me. Right now Chloe has moderate to severe hearing loss in both ears. She has pressure and fluid in both ears. There is so much fluid that her ear drums are not moving at all. Not even with air forced against it by the doctor. She needs tubes – no big surprise there. We also have some Nasonex to use until surgery to try and dry some of the fluid up. Chloe will see another ENT on May 17th for another evaluation and then have that same ENT do her tubes on Friday May 21st. They also ordered a hearing test for her once the tubes are in and while she is still under to determine what she can hear. This test will tell us if Chloe has any permanent hearing loss. The worst case is – meaning the removal of the fluid from her ears does nothing for her hearing – Chloe would need hearing aids to assisting her in hearing better. I’m thankful we know the worst case as I think it’s always good to know what you are up against, but I really think we are going to get great news after that test. Then watch out world because Chloe will know what’s like to hear ‘normal’ for the first time in her life. She’s already such a happy, easygoing girl – this should make her extremely pleased. During this surgery/procedure she’ll also have her cavity filled.

Chloe also needs a speech evaluation but she needs her tubes in first. That also means Cassie will be waiting on her evaluation too so that I can take them both in at the same time.

Chloe’s lip and palate look great so we have no follow up’s for either of those right now. I think we need just yearly visits for her with the cleft surgeon for that.

As with Cassie, no real surprises with Chloe’s evaluation.

Now we just look forward to the 21st when Chloe’s quality of life will dramatically change for the better. And so will life for all of us as we’ll get to see what Chloe’s like when she’s healthy, can hear, can walk 3 feet without falling and can sleep at night. She’s going to add more life to our already lively little family.

The simple things are all we are after here. You forget sometimes how important the simple things are when you don’t have them. God has truly blessed Sonny and I with magnificent girls. Everyday they teach us what’s important in life.

I’ll keep everyone posted as we learn more. Please say a prayer for Chloe as we need God to take her under His wing and heal her like only He can do.

Monday, May 03, 2010

One year ago today....

two women from the orphanage in Kunming City brought a scared and very tan-faced little girl to our hotel room. That day was the day we really learned what love was. This little girl was 13-months old, small, way too skinny, dressed in too many layers of clothing, sucking her thumb, wide eyed with tears, and holding a sucker. Little did this girl, named Xi Ming Zhen, know what was going on or how her world was going to change. Little did she know how she was going to change the lives of the two strangers she met that day. Here's our very first picture of Cassie on gotcha day, taken just seconds after she walked into our world.

Today that same little girl is a different child. She's now 25-months old, tall, the proper weight, has the longest legs, the most beautiful smile, is happy, content, and insists on picking out her own clothes. She loves the color pink, loves her stuffed animals, thinks it's a big deal to nap in her big-girl-bed, loves her new sister, and just the past week will call me mama. We have taken the long road with Cassie on attachment issues -- we have had many of them and still are working on a few. Cassie still has a hard time expressing her anger and frustration in an acceptable way to mama and dada; she still has a hard time being around too many people or being around any new people. She doesn't like routine changes either and definitely has a Type-A personality. On the flip side, Cassie has come so far in these areas in the past year. It's amazing to think back on the night terrors, the clinging, the biting, the sobbing when I left the room, and compare that to the girl Cassie is today. I would say 80% of these behavior's are gone and we are working everyday to help Cassie learn to be more comfortable in her new surroundings and how to express herself.

Cassie has amazing climbing and balance skills, knows at least 150 words, is getting pretty good at stringing words together, knows what she wants and can sometimes tell us exactly what she wants, gives the best hugs, and if I'm very lucky she even gives kisses out once a day -- on the lips -- which is new for her. Kissing on the lips has been a big step for Cassie, as she has a hard time being that intimate and vulnerable. Having a new sister has really helped in this area. The trip back to China was the best thing for Cassie. We were scared to take her back so soon, as we didn't know what the sights, sounds, and smells of China would do to her. She had a ball there and in fact I think it helped with her attachment issues. In China and once home she seems to know that Sonny and I are her parents. She trusts more, smiles more, and calls us by name more. These are all positive steps towards learning that mama and dada are going to be her parents forever and ever. I really think she gets it now. She sees the 4 of us as family.

I can't believe that this child is the same one we met one year ago.

Saturday, May 01, 2010

3 months with YiYu

As of today we have had YiYu (Chloe to some) for 3 months!!! She is an amazing child. Watching her open up in itty-bitty doses every day is so wonderful to witness. YiYu is having some health issues but is still making the best of things here at her new home. She fits in perfectly and I don't know what Zhen-Zhen would do without her now. They are truly best friends now. All this in 3 short little months.

Here's some facts about YiYu.

1. She can now say - no, more, night-night, bye, hi, milk, snack, mama, dada, eye, up and kitty. I'm pretty impressed since she has had fluid in her ears since we got her -- I'm sure it's always been there -- she's hearing like she's under water. And, she's just getting over her second ear infection since coming home. Plus, she just had her palate repaired last July, and has only been hearing English for 3 months. So those 12 words are precious to hear. She's one smart cookie.

2. She's been walking for 5 weeks now. She still falls quite a bit -- I'm sure due to the fluid in her ears -- but gets up and tries again with very little whining over falling.

3. She's got the tiniest little mouth and the cutest little dimple on her right cheek when she smiles. Which she's doing more and more.

4. She's still very easy going. She's my flip-flop and margartia girl -- not a care in the world. :)

5. Her climbing skills are getting very good. Except her balancing skills are not so good -- remember the fluid in the ears. So she's fallen off the foot stool, their little chairs and table a few times. But, that doesn't seem to deter her. Because of this we just put up a baby gate to block off the stairs. Just in case.

6. Her baby-body-type is now becoming the toddler-body she so deserves. (less baby fat)

7. She hates having shoes and socks on.

8. She will not walk outside -- like on cement or black top.

9. And don't even try to set her down on grass. She HATES it. She will totally freak out with screaming and shaking. It's very sad to see her like that. Mama will be working on getting her more comfortable outside. She also doesn't like the deck either -- because there are leaves and little things from the trees on it. And if one little blade of grass is on the floor in the house she gets extremely upset over it until it's gone.

10. She loves her sister. And shares so well with her. Here's an example of what a sweet girl she is. If I'm feeding them a yogurt -- which I do before bedtime -- if I give YiYu a bite and then try to give YiYu another bite she will shake her head no, point to Zhen-Zhen and say more. Meaning -- it's my sister's turn for a bite, not mine. And she won't take another bite until Zhen-Zhen takes hers. She's just adorable.

It's been amazing having two daughters for the past 3 months. I can't wait to see what the summer and the next 3 months is like.