The last 48 hours

First of all, thank you so much for all the prayers, e-mails, links to our blogs, FB messages, etc....they mean more to us than we could ever express!  I have been away from the internet for days, so when I finally got online this evening, the tears fell down my cheeks like a river as I read each and every one of them.  I needed the encouragement today, so thank you for taking the time to write.

Now, to explain how we got to be in the cardiac unit of Vanderbilt Children's Hospital.  Prior to our traveling to ET to pick-up Maura Rohama, I made an appointment with the international adoption clinic to have her examined upon our arrival home.  I didn't have any reason to be alarmed, but I figured that since so many children had been coming home sick over the last several months and considering the fact that Maura is well below the growth curve, I thought it would be a good idea to have her examined.  When we arrived, we didn't have any idea that our world was about to be turned upside down.  We were sitting in the exam room and Dr. Rothman got a funny look on her face as she listened to Rohama's heart.  Rohama started screaming, so we gave her a bottle and calmed her down and Dr. Rothman began listening again.  She told us that Rohama's heart sounded like a galloping horse and then stated that she would like for her to be examined further just to make sure that everything was okay.  We went to x-ray and then to the cardiac center and then back to the cardiac center.  After the heart ultrasound, we were told that it was not safe for us to take Rohama home and that she needed to be admitted immediately...I thought I was going to be sick right there in the ultrasound room.

Downstairs to the ER we went and Rohama was immediately taken back to a room.  A team of doctors and nurses started swarming around her and finally God presented a friendly face from my high school days - thank you so much Rachel for all your help!  After awhile, she was transported upstairs to the cardiac unit and the panic increased.  Ashton started crying and wanted to know if God was about to take Maura Rohama to heaven - how in the world do you respond to that when your heart and mind is asking the same thing?!  My Dad came and got Ash and we were caught-up in a whirlwind of tests and explanations about the very limited amount of medical information we have on Rohama.

Well, thankfully AWAA was able to get more records from ET and we were able to forward those to the hospital staff.  They assisted the doctors in trying to piece together labs, x-rays, and exams that she had experienced since July 10, 2009, when she entered the transitional home.  We were told that Rohama's right ventrical is substantially weak and that she has to work very, very hard to both squeeze the blood out of the ventricle as well as when the heart is "resting".  Consuming a bottle is very taxing for her and makes the back of her head sweat profusely - another sign of heart trouble, per the doctor, but we just thought, oh babies just sweat a lot. 

She came through the heart cath and biopsy just fine today.  We only had words with one lab person as she was very, very rude, had a horrible bedside manner, and couldn't draw blood if her life depended on it.  She isn't allowed back inside Rohama's room and has been banned from touching her at all, so we got that situation taken care of very quickly.  All the other people at Vandy have been so wonderful.  Rohama has them stumped because she doesn't appear sick at all.  She is laughing, squealing, blowing bubbles, and babbling constantly.  Yesterday morning, a cardiologist that we had not yet met came charging into her room and examining her very closely.  We knew he was a doctor, so we just sat back and let him do his thing and then asked why he was rushing into the room so quickly.  He stated that because of the severity of the test results, he expected to find her in pulmonary distress and needing to be in ICU.  He just couldn't get over Rohama's demeanor and easy-going nature.  Her new pediatrician laughed at him and said, "That's our Rohama.  She's quite something else."  My thought was, "Rohama is happy but why shouldn't she be because she has been in God's arms all her life and He's still taking care of her." 

I will say that throughout this entire ordeal, we are not angry and have certainly not talked bad about America World for referring a child with special needs to us when she was supposed to be healthy.  If we have learned nothing else over the last year or so with the unexpected death of my mother and our daughter, we have learned to treasure each day and find joy in all circumstances.  I can't tell you how many times in the last 48 hours I have quoted, "Walk by faith, not by sight."  We don't know what tomorrow is going to bring or even what the next hour will bring but we do know who is in control and are trusting Him. 

I am so thankful to be able to look over into the bed and see my precious baby.  I am so thankful that God spared her life and brought her to America where she can get top notch care.  I am also thankful that God didn't allow us to discover the heart condition until we were home because had it been discovered earlier, then we would not have received the referral as we were only approved for minor correctible special needs.  Rohama is our daughter and we accept all the responsibility that comes with her medical conditions.  I love her with a love that surpasses all human understanding.  She looks to Jason and me for comfort, food, and safety.  She may not recognize us as parents but she does rely upon us, so we think the bonding is going very well.  We are so blessed to have her in our lives!

You may recall that I myself have experienced heart disease.  I was diagnosed with post-partum cardiomyopathy when Ashton was 7 months old.  My condition is now cured but I believe with all my heart that God allowed me to be afflicted so that I could better understand Rohama's condition and provide treatment.  Also, God has reminded me time and time again these last 48 hours that just as He healed me, He can heal her.  I do not find myself in a doom and gloom frame of mind as God keeps revealing Himself to me and reminding me of His glorious presence and power.  I am scared - no, terrified - but I have peace in that I know God is taking care of her - afterall, she was His daughter long before she was ours.  I am so thankful for such a caring, loving God!

Tomorrow, we hope to find-out more results for bloodwork and meet with a cardiologist who specializes in metabolic disorders of the heart and who also heads-up the pediatric heart transplant team here at Vanderbilt.  Now, we're not at heart transplant right now but we do not know what the following days will bring.  We are praying diligently for a complete recovery and are trusting God.  My prayer also includes a request that God will help us to deal with any situation that may come our way.  Once again, I do not know what tomorrow will bring but we are to walk by faith. 

Another issue that we are dealing with is Maura Rohama's eating...she refuses to eat anything but F-100 formula.  This formula is specifically formulated for severely malnourished children, and she has been on it since August.  She doesn't seem to like the taste of anything but that, and we are having a very difficult time transitioning her to an American formula.  We are mixing F-100 with other formulas but so far, nothing is working.  If she doesn't start eating tomorrow, then they will have to insert a feeding tube into her nose, and this is something we definitely do NOT want to happen.  We are so thankful for all those who gave to the formula drive initiated by Tom Davis and his organization, HopeChest, as you helped to keep our baby alive until we could come get her!  Please help us pray that we can find the right formula to help Maura Rohama grow and flourish while at the same time appeal to her taste buds!

This post has gotten longer than I anticipated and I am exhausted, so while Rohama and Jason sleep, I'm going to sleep as well.  The couch is calling to me - at least until the nurse comes knocking in just moments.  I'll update when I can!

Please don't stop praying!!!!!!!!!!!!