Saturday, October 31, 2009

Update on appointments of the past week and random pictures

It was a busy busy week with all of Mia's various appointments. Her cardiologist appointment went well on Tuesday. She still has a small VSD but her heart was making its own rhythms when her pacemaker was checked. That is very good news because the hope is that she will eventually regain her own rhythm and will not need the pacemaker. Time will tell but it is great news! We are also going to be weaning her off of her medications over the next month and we will go back in December for another checkup. Her incision looks great and is healing nicely!

We also had an appointment at the local adoption clinic. I "heart" this clinic because they really get it when it comes to caring for the needs of adopted children. Her developmental skills were evaluated and she also had a medical exam. She will be starting PT soon and what I love about the facility that we will be going to is that it is family based meaning the parents are part of the PT sessions. We also met with a psychologist to address any social or emotional needs she may have. We are not having any bonding or attachment issues that we can see at this time. Praise God and praying that this continues! The doctor felt that based on our conversation Mia was doing very well bonding to us. Her medical exam went well though we are going to meet with the feeding team. Mia has started to "chipmunk" her food. She will eat a couple bites of food and then keep it in the roof of her mouth for sometimes over an hour. This just started after her surgery. The thought is that since her hospitalization was so long and difficult on her and that she had no control over what was happening to her that she is now controlling the food in her mouth. It makes sense, right? It doesn't happen every day but is frequent enough that we want to address it before it becomes a real problem. If she wasn't underweight we would probably wait to see if this phase would pass but she really needs every calorie she can get.

In a nutshell, there you have it, our past week recap! Lots of progress was made and I am looking forward to more to come!

Happy Halloween!

Can you believe all of our leaves? Seriously. We just had them cleaned up less than a week ago. It gives our Halloween photo that extra "fallish" look don't ya think?

Monday, October 26, 2009

Floor time

We have a couple appointments scheduled to have Mia evaluated for physical and occupational therapy. Unfortunately the one center that offers for the therapists to come out to your home for the therapy has a wait list of 2-3 months. We are going to fill out the paperwork to get on the list but in the meantime have another appointment at a local international adoption clinic for a second evaluation this week. Tommorow Mia has her 6 week cardiologist appointment at 8:00am. Oh how I dread, dread, dread, walking back into that hospital. The memories are still too fresh in the mind. This will definitely be a Starbucks worthy morning and it will be my first stop at the hospital. I might even order an extra shot and a venti just to get me through the morning full of test and what I am sure will be a tired and uncooperative girl!

We try to have alot of floor time at home. Most days Mia is all for it and cooperates. She is generally a happy little girl but today she fussed and I decided it was camera worthy and deserved to be documented. Of course the fussing didn't last long especially after she noticed the camera was out!

Monday, October 19, 2009

For the Bengals fans.....

Aunt Dani and Uncle Brian are big Bengals fans! Uncle Brian bought Mia her first football jersey and she was sporting it on Sunday. I, of course, appreciate that it is pink! On a side note Christian also proudly wore his Browns coat yesterday when we had some "mommy and me" time and went to lunch. There aren't any fair weather fans in this house! Yep they stay true to their teams win or lose (even if the lose every game~lol!).

Friday, October 09, 2009

Thursday, October 08, 2009

Post op checkup

I held my breath as we entered the hospital for Mia's first post op checkup this morning. Mia has done beautifully since coming home and we haven't noticed any signs of her being in distress. Still I knew her chest x-ray would determine our fate. There were two possible scenarios. If the "stubborn left chest fluid" had increased we would be readmitted to the hospital. If it stayed the same or absorbed we would be allowed to return home. WE ARE HOME TO STAY! Her chest x-ray was clear and the fluid is GONE! PRAISE GOD! It feels amazing to breathe that last sigh of relief and to finally be able to really enjoy being at home.

Monday, October 05, 2009

Going home!!!!!

After 4 weeks at the hospital we have finally been cleared to go home! I have to start packing up 4 weeks of "stuff"! Next post will be from home sweet home!

Sunday, October 04, 2009

Weekend hospital happenings

I am sitting in Mia's hospital room waiting for the nurse to pull out her chest tube. There is still a tiny amount of fluid but the doctors are pleased with the result of the procedure. We were given the option to pull the chest tube tonight or tommorow and after her chest x-ray revealed that her chest tube is starting to fall out it was decided to pull it tonight. She will have another chest x-ray tommorow morning and if it looks good we will be on our way home. I can't wait to get home but I am trying not to get my hopes up just in case. Unfortunately I have learned not to get my hopes too high throughout this process. Sad but true. Hopefully tommorow we will be saying goodbye to our overextended hospital stay and this last month will begin to become a distant memory.

Friday, October 02, 2009

Out of recovery and back in her room

The procedure went great and Mia is back to to her happy and smiling self. She was playing with a styrofoam cup and oxygen tube when I first saw her. The next couple of days will determine if the procedure worked. I am praying hard that it does.

I am leaving the hospital for the weekend and will return on Sunday. My mom is staying with her tonight and Dan will stay with her tommorow. I am looking forward to spending some time with the boys and sleeping in my own bed. Other than that I could care less if I do much else because I am exhausted and really just want to enjoy the comforts of home if only for a few days!

Procedure underway

I was able to stay with Mia until she was completely sedated in the operating room. It was heartwrenching to say the least. She grabbed for my face and looked deep into my eyes as she fought to stay awake. I kept stroking her hair and telling her "it was okay" and that "I loved her." The anesthesiologist sang "row row row your boat" to her as she fell asleep. It was very sweet! We are a little over an hour and a half into the two hour procedure so I am hoping to get called soon to come back and see her.

Procedure today

Mia is going to be having the sclerosing procedure today to hopefully eliminate the fluid on her left side. It is a very painful procedure but she will be sedated so she should not feel anything. I am hoping that I will be able to be in the procedure room with her to comfort her. It should take 2 hrs or so and during that time they will be rotating her to make sure that the medicine coats all sides of her. The goal is that the medicine helps the lungs adhere to the chest wall not allowing the fluid to collect. The surgeon told me that it has a high success rate and at this point it is the best option to try. I am hoping that we end up in the category of "high success" especially since she doesn't have a ton of fluid and this procedure is usually performed in more complex cases. She can have the procedure performed up to three times if necessary. I am aware of the alternate options if this doesn't work but I am trying not to let my mind go there because they are more invasive and she will ultimately end up back in surgery.

Please pray that this works for her today with minimal amount of pain. I am beyond desperate to see the light at the end of this very long tunnel. Mia needs to get home. We need our family back together under one roof. I miss my boys terribly and feel like I have abandoned them. They are handling our separation very well (I am so proud of them!) but I need to get home to them. I need to resume my motherly duties to them. I have missed so many of their football and soccer games. I have been completely "out of the loop" with their schooling. I miss my husband. Dan and I have literally passed each other as we switch shifts at the hospital. My parents have been amazing with helping us and I will never be able to thank them enough. They even rescheduled a much deserved vacation to be here for us. They need their lives back.

As I said before despite all of the events of the past month I would do this all over again in a second for Mia. Before her surgery it would anger me that she was allowed to live in China without the surgery she so desperately needed. I shutter to think about if she had had surgery in China and experienced these complications what would have happened to her. After all that she has been through she smiles at everyone(as long as they are not touching her), waves bye bye, and blows kisses. She is such an example of facing challenges with a positive spirit and a smile. There have been many times that I have needed to take a lesson from her. Who would have thought in spite of her own struggles and pain that she would have taught me a lesson on how to conquer? Still as her mother I long for her pain and struggle to end. Today I pray her end to this chapter is closer so her next chapter can begin.

Thursday, October 01, 2009

Preparing for the final word on the next procedure

While we still have not received official word there are rumors this morning that Mia will be having the "uncommon" procedure today to inject her chest tube and hopefully dissolve the fluid. Again I was told it is pretty painful so I will be requesting the max sedation that they can give her. I am still waiting on rounds to hear the final verdict but that is where we are heading. She will also have an echo while she is sedated. Big sigh.