Thursday, December 8, 2011

Wednesday night update

Overall Myla has been doing great! She was able to get up yesterday around 5 in the evening. Her first attempt, she yelled "ow" but like the doctor said if you let her on her terms she will most likely be more willing. About 30 minutes after the doctor left, sure enough she wanted me to hold her and for the first time in 48 hours-a rough 48 hours-I was able to hold my sweet baby!

I was so overjoyed to have this precious moment. You may wonder why Myla never has on a gown, well, the long and short is she hates them! Any time we could get one on her in PICU, when she would wake up, the first thing she would do is rip it off and anything else she could find. Many attempts at the heart monitors, pulse ox, and IV. That is why she has on the little white and yellow splint-to keep her other hand from pulling IV out.

She then went for a wagon ride to the playroom down the hall. Although there weren't a lot of smiles, I know she was glad to get out of her room. Especially since her siblings, Daddy, and Aunt Angie were with her!

Well, the fun went down hill from there and it really had nothing to do with her back or getting her up. She was very tired and I think she has had bouts of itching from her pain medication. She had one last night and ordered Benadryl-but it took forever to get up to the floor. She ate pretty good, but then had some bizzare blister on her tongue. An hour and a half later she calmed down and went into a good deep sleep. Thankfully the night time sleep was very good with only two interuptions and she went back to sleep withing 20 minutes of the nurses leaving.

Thank everyone one of you for praying. We have truly felt God's hand through all of this. Myla is surprising us every day as her recovery has been great. Her surgery was shorter than expected, her incision is shorter than expected, and we will probably go home on the earlier end of our estimation! The issues we have been dealing with haven't had much to do with her back!! The other issues have been unexpected but what 2 year old or even 40 year old likes needles in their hands and feet, or to feel like they are itching to death! She is such a trooper!

Tuesday, December 6, 2011

Myla Tuesday night update

This post will be short and sweet as I am ready to try to get some sleep. The big brothers and sisters were able to come Myla this afternoon. Although we had orders to be moved to a room, we were waiting for one to become available. They were all super sweet and curious about all her cords. It's a beautiful sight watching such HUGE compassion and tenderness towards their sister. They love her SOOOO much. Incidentally we were moved about 30 minutes after they visited. YAY!
Myla drinking her juice staring very intently at her brother, Nicholas. He is in love with her! And she loves her ge ge (big brother) in Chinese, and YES this is what she calls him.

Ethan-such the proud protective older brother. Asking if it's ok to touch her and give her a kiss. Of course I said. I was very thankful she allowed him to do this as she was not in the best spirits while they were there.

Big sister Zoe, I have been so blessed to see their relationship blossom. Understandably Myla felt in the beginning that she had to make sure she was the new princess in town and often wasn't always the kindest to Zoe. But what a difference time makes. They can play very nicely together as I have dreamed they would. Sisters forever! Zoe drew Myla a picture-she was so tender and calm with her. Talking so sweetly-describing all that was in her picture. It consisted of some reindeer, and a sleigh with gifts for everyone!

This is Ms. Lori one of our last amazing nurses in PICU. They really spoiled us there with phenomenal care-Myla was her only patient for the majority of the day! And it was a good thing too......

because this is how Myla looked for several hours last night! She had a reaction most likely to the adhesives used in surgery. We are still wondering why exactly, but she was so swollen, more than the usual fluids will do. She was very itchy and agitated. Benadryl and some anti itch meds helped the swelling go down and the redness in her face is now 90% better. Even with the poor coloring of the pic you can see the improvement over time-compared to pic above.

She is now resting well, she is being rotated every 3 hours-yay we gained an hour from PICU. We are praying we can roll her and her be able to go back to sleep. During the night and this a.m. she was needing pretty significant amounts of anxiety meds with pain meds. Thankfully she hasn't had any anxiety meds since about 10 a.m. They did however, increase her pain meds. We are hoping to go the night without anxiety meds. She has had some pretty good meltdowns where we have had to hold her hands and legs to keep her from hurting herself or pulling out IV. That is sooo hard to watch. She has such good lungs and has told me all about how mad she is but I know better than to take it personal. I'd be screaming too if I had a 6 inch incision going down my back, all kinds of wire and ichy IVs.

She has eaten some pureed baby food and had two cups of her rice milk and pooped YAY!! LOL


her contact dermatitis is improving

we are off PICU-which means closer to going home

she has eaten pretty good and had good calm awake time today

she hasn't had anxiety meds in about 12 hours


that she sleep well tonight

again no leaking CSF

that she will somehow gain some peace about these IVs

no constipation

that she won't need anxiety meds tonight

that she will have fewer episodes of being distraught

that her need for pain meds would start to dimish

that Shane and I will be able to soothe her when she is distraught

Thank you all for praying for our sweet Myla. Praying for a ton more praises to our Jehovah Rapha-the Lord our Healer!

Monday, December 5, 2011

A few quick pics

Myla right after surgery, doesn't she look great!

Myla playing matching game. Her eyes are still very swollen from fluids and laying on her face for so long.

Sweet daddy holding ipad for Myla to play games.

Myla after some anxiety meds. Resting calmly with Patch.

We love you sweet girl and are so proud to be your mommy and daddy. We are so sorry you are having to go through this but know that Jesus is with you. He loves you more than we can fathom!!! We pray He is whispering sweet dreams to you while you sleep and that He will take away all your pain and fear! By His stripes you were healed Precious One!

Posted using BlogPress from my iPad

Myla update 9:55 p.m.

Myla is resting well right now. She came to PICU around 5:45 and we were excited (and mommy a little tearful) to meet her in the hall. I was glad that Ethan, Nicholas, and Zoe were all here to see her briefly. She looked so good considering she had been laying face down for 7 hours. Our first 45 minutes in PICU were rough as she had 5 nurses around her getting her situated, hooking her up to machines, and :( looking at her incision. WOW, I'm not an expert but it looked great. With an extra dose of pain meds she was resting nicely for a little over an hour. She is on a continual feed of pain meds but can bump it up as needed.

She woke and was restless but was somewhat entertained by the infamous Ipad. She love the matching game and despite her medications she did quite well. After 3 other brief forms of entertainment, she became quite restless and was close to needing arm splints so she wouldn't pull on her IVs. She just couldn't understand why all those things were in her hands and foot. OWWWW she said, "hurt"!! But we made the call to give her some anxiety meds and she is now resting peacfully.

On to the doctor's report. I typed all this once but lost it-thank you blogpress! UGH, so I am sure I will miss something this time. But here it goes. Overall, YES the surgery was a success. Praise the Lord!! The doctor was able to do all he needed to do. Her neural monitoring was great meaning they feel good that no nerves were affected today. We will only know this 100% when we see it functionally, but are thanking God for the good news already that there is no new nerve damage. The not so good news is that there are 2 areas of nonfunctional nerves one mid back and one lower in tailbone area. The doctor feels that these areas are directly related to some of Myla's limitations. One being her mobility-difficulty with coordination when running, and leg weakness. Although he says these nerves will never be functional we are praying that God our healer will revive these nerves.

She has a very large opening in her spine where they drilled away the bone to get to the bone spur causing the split. He feels he got good closure of the dura, but emphasized the importance of watching for leakage of cerebral spinal fluid. So continue praying for that. She did receive blood not because she lost a lot but because she was dehydrated. They gave her IV fluids and in doing so watered down her blood to where her counts got too low.

With regards to her surgery in China, the doctor saw no indications at all that her surgery was more than superficial-on the surface. His words were, the area was "undisturbed". We don't know but it is possible that she had a cyst or lipoma that was removed. To me, that is great news as the more you mess with the spinal cord the more chances of damage! Her existing nerve damage just came with the package of her diagnosis he says. So the official name is diastomyetomelia! What a mouth full!

Surgery 7 hours not 8-10 like we thought it could be
He was able to do all his work without moving the spinal cord or having signs of neural damage
She tolerated procedure and has no side effects from anesthesia or medications, not even nausea
That the time passed fairly quickly and we had huge amounts of peace
That friends and family have been amazing and supportive

No cerebral spinal fluid leakage
Manage pain and she would be calm
That everyone would get good rest
That she wont fight laying flat- so hard not to pick her up when she was reaching for me!!
No infection
No fevers
That she will eat tomorrow or later tonight
No constipation from all the meds
That I would get 100% over this awfull cold I have had for two weeks-sorry all these prayers are so amazing I had to slide one in there for me!

That's it for tonight, I want to add pics before computer dies

Pre op photos

Sleepy Daddy loving on his girl.

Such a happy girl at 6:15 in the morning. Arms stayed in warm blankets in hopes of getting a good vein for IV and blood draw.

Myla being wheeled away for surgery. She was very content, looking back at her Daddy! That Versed does wonders for anxiety. The head nurse said she was content while they were getting her all set up and ready for sedation. She was even asking questions. My curious little one!

Posted using BlogPress from my iPad

Myla still in surgery

Myla has been in surgery for 6 hours now. They have completed the removal of the bone spur and released the split portion of her cord. They are now working on the non split portion to detether (release) it. They are starting a blood transfusion. We were hoping to get by without this, but thats not the case. Trusting God the blood is pure and that her body does great with it. This morning went well. We were actually a little late arriving because dad over slept! Ha no really it just took longer to get out the door. It was super cold and wet outside. Myla arrived styling her pink panda pjs! So snuggly and warm. Knowing they needed blood to cross and type they decided to try to get an IV needle in where they just stick her one time. They were forewarned that she is a hard stick. Well unfortunately after many tears, the poor baby, they didn't get a vein. We waited a while and the lab people came in and got a vein first try. Glad of that but hate Myla had to endure all the pain and discomfort of being held down. Other than that, she did great! She is such a trooper". Hope to update when she is out of surgery.

Saturday, December 3, 2011

Myla is having surgery!

This time last year I was very concerned about when we would be traveling to bring Myla home.  We had received Referral Approval but were waiting on Travel Approval.  More than that we were waiting for our updated home study to be process with the USCIS to gain approval to adopt Myla.  With special needs children your home study must reflect what diagnosis you are "approved" for and willing to accept.  Well, as you now know ours said club foot and anemia.  The hysterical thing is it also said we were NOT open to SPINA BIFIDA!!  OY!  Ha-God's plan is so much bigger than ours.  I have no doubt He knew that it would take baby steps to get us where we are today, where we were a year ago, where we were June 2010 when we met Myla, etc.  I tell people often if He had revealed this path to us in 2007 when we started this process, when we had an almost 2 year old, 5 year old, and 7 year old, I would have shrunk in fear and honestly don't know if I would have said "yes" to His call.  Isn't that just truly amazing that He knows each of us so intimately that He orchestrates a perfect and beautiful plan to accomplish His will.  I LOVE reflecting on His sovereignty it is glorious!

On December 6th 2010, we received word through another family in China who were adopting a child from YaoYao's orphanage, that YaoYao was walking!!!!!!  I can't tell you how thrilled we were to hear that!  If you know us at all, my husband is the optimistic and I can be well...the glass half empty type.  So although I was thrilled to hear this, and the information coming from the director, made me feel a little more confident it was true. But, I decided to believe it when I see it.  I mean walking??? when she wasn't even moving her right leg when we were there less than 6 months ago?  Could it be?? Well, on January 10th, as I saw our 16 month old daughter for the first time is 6+ months.  A nanny was holding her.  I was over joyed but the tears-lots of them- came when they put her down and she started walking.  I know I must have looked like a fool being so emotional in front of the director and all the nannies.  Glory be to Jesus, our little miracle baby is walking!!

On December 2, 2009 when Myla was just 3 months old, she had her first surgery to repair some form of spina bifida.  We still are not sure exactly what it was-and will never know-but her report said meningocele which on a scale is moderate in severity.  Myla does have some nerve impairments due to either her original diagnosis or her current one.  After an MRI and CT scan we were told in July Myla has a split spinal cord.  As you well know this is pretty WOW!  Her cord goes down her back mid way in one piece and is then split by "a lot" of bone, then comes back together.  This is the words the neurosurgeon used several times "a lot" of bone.  She also has a tethered spinal cord which means that although the cord should move freely around in the spinal column, it is being held taunt.  Myla will be having surgery Monday to repair her cord and remove the bone that is causing the split.  This will involve drilling away not just the bone in the middle but the bone that faces her back.  Below is a picture so you can have an idea of what I am talking about.  Just envision all the bone inside the red triangle being drilled away, and so close to her cord!  YIKES!
There are so many other strange anomalies with regards to her spine.  It look like a mess, but Praise God, she is doing fantastic.  We praise Him for how she is doing now and pray she will continue to have her mobility.  We know full well though that with spina bifida things can drastically change as a child grows.  Just because she can walk now doesn't mean she will always walk.  I hesitate even saying this as I don't want it to appear that I have a lack of faith.  The bottom line is that if God Almighty wants her to walk the rest of her life she will-and we are asking Him for this!  And if for reasons we don't understand He chooses otherwise, we will still praise Him.  For He alone is sovereign in ALL things!!!  And I am so thankful for that truth!

Myla's surgery will be 8-10 hours long.  She will have to remain flat for 48 hours and then she will be able to sit up for very brief periods but then lay flat for an additional 5 days.  Her expected length of stay in the hospital is between 4 and 7 days.  Below are the prayer requests that I have thought of at the moment.  We would love your support in praying for each of these.  I hope to update daily, at least briefly, the Praises and Requests of the day.  If you would like to follow feel free.  If you know someone who feels a burden to intercede on Myla's behalf feel free to pass this along.

**Pray for Myla's surgeon Dr. Roberts-that the Lord would use him in a mighty way and that he would see God's hand throughout the surgery and be drawn to Him!


1.  No infections
2.  No cerebral spinal fluid leakage
3.  No nerve damage -i.e. paralysis, paresis, bladder, bowel, reproductive, etc.
4.  That the surgery will improve the existing nerve damage
5.  That she will feel secure and not afraid.
6.  That she will comply with laying flat for 7 days.
7.  That she will sleep well
8.  That we will know clearly when she is in pain and be able to manage her pain
9.  That she will eat
10.  Peace of mind and heart for our 3 other children as they watch their sister walk this road
11.  That God will give His strength to family that will be caring for our children throughout the week.
12.   Last but not least-that we would see God's glory and praise Him through it all.

John 9:2-5 2And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" 3Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him. 4We must work the works of him who sent me while it is day; night is coming, when no one can work. 5As long as I am in the world, I am the light of the world."

We are trusting God to heal Myla completely.  He has such an amazing plan for her, greater than we could ever imagine.  This surgery is just a small portion of her life's testimony.  I can't wait to see how the rest unfolds!

I'll close with a few pictures.  If you hung in there this long the least I could do is show you some current pictures of our blessing from China!

Myla being silly in front of the HUGE tree at the hospital after pre-op.

Thanksgiving day

All 4 of my amazing children!

Summer vacation-drinking a HUGE malt! YUM!!