Tennessee Early Intervention Services

Today was Maura Rohama's first appointment with TEIS (Tennessee Early Intervention Services).  I answered a lot of questions about Maura Rohama's development milestones and she received a grade per se.  We have asked for a complete evaluation that is very thorough (that will come in the weeks ahead).  She is doing really well but does need some help with her motor skills.  Via her birth certificate, she is now 10 months old, however the doctors think she is actually only 8 months old but we are going to leave her birthdate alone as changing it could create more of a headache and there's really no way to know for sure.  If Maura Rohama is accepted into the program, she will gain invaluable assistance with learning to crawl, walk, etc. 

When we first brought her home, her legs were like rubber - absolutely no strength at all - but now, she is able to pull-up with little assistance, can bounce, pull-up on all fours, and support herself.  We were shown several exercises while we were at Vanderbilt, so I try to work with her every day and her hard work is paying off! 

We started her on #1 baby food yesterday.  She ate sweet potatoes for the first time yesterday and loved them.  Because she only weighs 11lbs 13 oz., it is really important that she consume her high calorie formula more than eat food (cereal is very difficult to get into her) but she's giving us a really hard time and watches us intently as we eat....it makes us feel so bad, so we do what we can not to eat in front of her.  Our house is now built on schedules and rotations!  Because of all her medicine, there is a list of food that she cannot eat and unfortunately most fruits are on that list, so we have to be so careful as her palate expands. 

Well, we'll hear back from TEIS in about 2 weeks, so we'll see if she qualifies for any services.  We want to do everything possible to help her catch-up and have the best life possible!

"He's got the whole world in His hands...."

I haven't been able to blog very much since we got home and I miss it...I miss my friends and the comments and reading other people's blogs.  Life has definitely changed in the Reed household and some days I struggle.  This blog is all about honesty and with the good comes the bad and if I just ignore the hard parts of life's journey, then I'm not being real.  Tonight, I had a good long cry and chat with God....it was much needed.

When we arrived home with Maura Rohama, we were so elated and still are to this day.  I wondered what it was going to be like when we finally took physical possession of her because I have read so much about parents feeling detached, some sad that the adoption journey is over, and some parents bonded so easily.  I can honestly say that it has been so natural holding, caring, and loving Maura Rohama.  This may sound crazy but I don't do very well changing poopy diapers that don't belong to Ashton (this can really gross me out and result in some MAJOR gagging), so that was a concern that I prayed a lot about - hey, God cares about all our concerns - and guess what, they don't bother me at all! 

I'm going to be totally honest with you about our time in Vanderbilt - there were moments when I didn't know if we would ever walk back out the door with Maura Rohama alive in our arms.  In a week, that baby endured and continues to endure more testing, bloodwork, and medicine than most of us will ever endure over our lifetime.  I was so scared those first 24 hours and whereas sleep was elusive, God was not.  I prayed for peace and God granted my request.  The Sunday afternoon when we walked through the lobby and Maura Rohama was in my arms, I had tears of joy and thanksgiving streaming down my face.  From the moment she entered my arms until she was safely in her car seat, I was praying a prayer of praise and thanksgiving. 

I was so excited when our first visitor came by last week and Maura Rohama was very timid and didn't want her to hold her.  She wanted her Mommy!  This is HUGE in adoption attachment and it blessed my heart to see her lip quiver and her little hands reaching out for me!  Of course, Maura Rohama doesn't get out much and contact with "outsiders" per se is very limited, so we have had a lot of "forced" bonding but it's bonding nevertheless. 

I have so much fun with Rohama.  With Ashton, I was so nervous all the time.  Outside of acid reflux, he was a healthy baby, but I was so scared I would do something wrong.  With Rohama, I just laugh and have so much fun with her - even with her heart condition.  We don't know what each day will bring and the doctors have prepared us for the worst but I am determined not to let that get me down and to enjoy each and every moment as a family.  God has given me so much peace about Rohama's health.  I know He is going to take care of her - even if that doesn't mean that my will coincides with His.  I am so excited about my children and they both bring me so much joy!  Rohama and I generally wake Ashton up each morning by snuggling with him.  Rohama loves to give him slobbery kisses and Ash complains but always leans forward for more! 

One of the hardest parts of life right now is that I miss my job.  I don't make much money working mostly court-appointed cases but I love my job and enjoy working with the other members of the Bar and judicial system.  The judges, clerks, other attorneys, paralegals, CASA, and Dept. of Children Services staff have been so supportive of us and I miss them so much!  Some days I struggle with knowing that Jason's life is trucking along like normal and right now, I don't know when I will be able to resume my career - I LOVE being both attorney and mother.  I had planned to take time off for bonding but it is difficult not knowing if and when I will be able to reenter the workforce.  I think about finances and the medical bills that are now trickling in, but it's not just the money I miss, it's the people.  If any of you are reading this, please know how much your support has meant to all of us and that I will be back when Maura Rohama is feeling better but until then, I will do whatever I need to do to keep my baby healthy!  In the meantime, I'm praying about the direction of my career and anxious to see what doors God will open.  Thank you so much for your prayers and cooperation (over this last month especially)!

December has also brought with it great turmoil and discord which has resulted in broken relationships that cause me great pain and sadness.  Tonight, as I was trying to get Rohama asleep and she was screaming and gasping for air, I found myself singing "He's Got The Whole World In His Hands."  I could feel the moment when Rohama gave-up control and gave-in to rest.  Her little body jerked and she snorted for air and then she went limp with sleep.  I couldn't help but correlate this with my walk with Christ.  He knew all that December would bring and has been preparing me all along to be able to cope.  I am so stressed that I am having rather significant chest pain and numbness in my limbs.  I pray constantly but until tonight I haven't relinquinshed control. 

Tonight, as I prayed, I could feel the tension and stress lifting but most of all, I could feel the comforting arms of God.  As hurt and stressed as I am, I cannot fret anymore.  I'm tired and weary - I cannot carry these burdens any longer.  Tonight, I gave these situations over to God, and He will take care of them and work in hearts - all of our hearts. 

During my prayer time God convicted me that I am only responsible for the actions of my life and for my testimony...Jason has been trying to tell me that for weeks but I'm slow at times.  I'm not going to stress over my job responsibilities and have placed my career path in His hands. I forgive the one who has caused me such pain.  God will continue to work in all of our lives and He can turn our relationship around and guide career paths...afterall, He's got the whole world in His hands. 

Christmas was also difficult because as we rejoiced over our new child, we also mourned the death of Julianna Ashure Deborah Reed.  I look at Maura Rohama and I think about Julianna and praise God that she is in Heaven with Him and not alone in a cemetery half-way across the world.  Oh, how I love my little girl!  I know my Mom is praising God right alongside her!

Also, throughout this month, my father-in-law has been recovering from very evasive back surgery.  He has had setbacks along the way - even so much that he is back in the hospital as I write.  Tomorrow, he will be undergoing more procedures to determine how much the incision is infected.  It may be that the doctors have to remove all the hardware that they put into his back and he will ultimately have to undergo surgery again to replace it.  His fluids will also be tested for Staph and Mersa. 

As Jason left for the hospital, my son had tears pooling in his eyes only for them to start spilling out on his cheeks as his daddy drove away.  Ashton doesn't trust doctors or hospitals and since my mother and his sister died, he is very emotional about people close to him being sick or his not being able to communicate with them whenever he wants because then he fears that they have died.  As he prepared for bed tonight and said his prayers, once again the tears fell as he begged God not to let his Pa die.  One little 5 year old boy should not know such pain in his life at such an early age.  This last 1 1/2 years have been hard on him too.  One person commented some time back that they are anxious to see how God uses Ashton and his life plan because God has molded him from a very early age with a lot of rather harsh life experiences - I too am wondering because I know that just as God is preparing me for life, He is also preparing my children. 

December has been full of a lot of tragedy and heartache but also full of blessings and love - I see it everyday in the eyes of my children.  Life is everchanging and although we don't know what is right around the bend, God does and He will bring us through!  Never forget that even during the darkest days of life, He's got the whole world in His hands!

Home 1 Month!

One month ago this evening, we arrived home with Maura Rohama!  It is so hard to believe that we have only been home a month because it feels like she has always been here snoozing in her crib.  What a whirlwind this last month has brought for our family but through it all, she has been such a trooper - a happy trooper at that!  Tonight, for the first time, she cried for almost 2 hours.  I tried everything to calm her down but nothing worked....finally, I realized the culprit - 3 teeth that are about to erupt through her lower gum.  She is now asleep and I am hoping that she does well tonight - especially considering that she will have to be given medicine twice throughout the night and I need her to cooperate and not spit it out everywhere. 

Ashton meeting his sissy!

Now, for an update on Maura Rohama's heart.  We went to the cardiologist on 12/21/09 and after an ultrasound, we were told that she is no better but no worse either.  Her Coreg was doubled, so we'll see if that helps her heart get stronger and shrink to a normal size.  We go back to the cardiologist on January 14, so we'll see what the ultrasound shows on that day.  The cardiologist stated that she may never get any better or that we may see improvement at the next visit.  She said to prepare for it to take even 6 months or a year before we see any more change.  She is very straight-forward with us, and I totally appreciate that as I can't stand to be lied to or for the truth to be candy-coated.  We left the visit very upbeat because at least she isn't any worse!  We are still praying and trusting God - she is His first and foremost, afterall!

What NOT to do with Playtex drop-ins!

The Sunday after we returned home from ET, I felt like I really needed to sterilize Maura Rohama's bottles because of travel germs.  I got out my handy dandy Avent microwave sterilizer and added water and popped it in the microwave for 3 minutes.  Well, sadly enough, this is how my bottles came out of the sterilizer:

Never, ever sterilize the bottles in the microwave as they melt!  There is a disclaimer on the bottle that says not to microwave or boil as the liner may burst, but I thought this just applied to when the bottle contained a liner.  I never nuke bottles with formula, but it never occurred to me that this meant they couldn't be sterlized in the microwave!  Oh well, after almost 30 hours of travel, jet lag, and getting up and down with a baby, my brain was fried and unfortunately the bottles became victims!

Update on Maura Rohama - Our 1st real weekend home

I know I have been a baaaaaaaaaaad blogger, sorry but time has been limited and we only have dial-up internet at home so it is takes forever to post!  I can't wait to be able to post about the traditional dinner because I have video that is hilarious as some of our travel group danced and joined-in the festivities - stay tuned for video of Meg Sabini and Randall Goodgame!!!!!

I am excited to post that Maura Rohama is home from the hospital!  She came home this past Sunday afternoon.  She takes 8 different types of medicine 6 times a day, so I feel like I am washing syringes all day long but if that's what it takes to make our baby better, then I will gladly do it!  Her final diagnosis is cardiomyopathy.  We went to the cardiologist's office this past Thursday and are excited to announce that she is showing signs of improvement!  At the hospital, her heart rate fluctuated between 170 and 220 but it is now staying right around 124, which is still higher than normal but much better than last week!  Also, the cardiologist stated that her heart muscle seems to be working better when both relaxing and compressing.  We were told that her heart still appears substantially damaged but it is promising to know that the medicine is working after only 1 1/2 weeks.  Also, we found out that an enzyme problem was detected in her urine sample, therefore another sample was taken for comparison.  Dr. D, the cardiologist, stated that if the same conditon exists in this sample, then it is very likely that we have found the reason for the cardiomyopathy.  If this is the case, then we will add another specialist to our family of physicians and hopefully we can get this under control and prevent further damage. 

We are very fortunate in this because while she was in Vanderbilt, we were told that we would likely never know the cause and that this could be good because of so much unknown in Maura's genetic background, we could have found-out a cause that would lead to brain damage and organ failure which would cause great stress and concern on our family...we were told to just enjoy each moment together as there is no promise of what may come in the future.  Obviously, we are concerned, but we are trusting God and are so thankful for the good report that we received this past Thursday.  I will be SO HAPPY when Dr. D looks at us and says that we are finally over the hump when a heart transplant is likely!  That is still a very real possibility for Maura but if that's the road that we have to travel, we will do so and continue trusting that God will care for her - she is His first and foremost.

It took us forever to get out of the hospital on Sunday because everyone - and I do mean everyone - that had anything to do with Maura had to come say goodbye.  She even had her room cleaned first that morning so the staff person could be sure to tell her bye before discharge.  The staff at Vanderbilt has been wonderful to our family!  I am so thankful that we went through their adoption clinic and that God used them to save Maura's life.  God's timing is just so wonderful as we were told that she would not have survived very much longer in ET because of the amount of fluid around her heart and in her lungs.  When I very first held her that day in ET, I exclaimed that she was our miracle baby but little did I know just how true that statement would become.  I am SO thankful for this child that God has blessed us with!

It is so good to see her sleeping in her bed!

Maura contines to be a happy, jovial little baby girl.  Her legs were like rubber when we first got her but they are getting stronger each day.  She is clapping and waving and is fascinated with chewing on her fingers and toes.  She loves to swing and play in her exersaucer.  We think she is about to cut teeth because she is a drool monster and loves to chew on anything she can get into her mouth. 

Ashton and Maura Rohama just love each other!  As soon as she hears his voice, she starts babbling and looking all around for him.  When we say, "Kiss, Maura Rohama", she opens up her little mouth and leans forward to place her lips on your face or arm or wherever she can reach - this just cracks Ashton up and he says it over and over and over again.  He's so captivated by her.  When he gets home in the afternoon, she is usually just finishing-up her afternoon nap and he gets so upset that he can't go kiss her right away.  He also doesn't like to share her.  This past week, my sister-in-law Denise and her 5 year old daughter visited briefly and he got very upset and said that the only ones who could hold her are us because we need to bond - he's heard a little too much adoption talk I would say (both from us and from the docs at Vandy).  It blesses my heart so much to see them interact together!  We have waited so long for this precious baby to join our family that we just can't stop kissing on her.  I see how Ash is with her and I just hug and kiss on him all the time too and he starts saying gross and wiping away the "love."  We are so blessed!

We just can't wait for everyone to meet her!  I asked Dr. D about taking her out and she said that now is a dangerous time of year due to flu, viruses, and colds but that we cannot keep her in a bubble.  She said we could have visitors but they cannot have even a sniffle or runny nose and they cannot have recently been around anyone with any symptoms of sickness.  She said to use our judgment but to be very, very careful as she is in a fragile medical state right now.  Also, she said that if we went to church then we must slip-in after the service has started and then slip-out right before it ends so no one will be in her face or asking to hold or love on her.  Dr. D knows all about our journey and as she said on Thursday, so many people have been praying for Maura Rohama that they feel as if they have a vested interest in her, so it will be very difficult for people not to want to ooh and ah over her.  So, if you do see us at church please don't think we are being rude for not allowing physical contact or too much interaction in her face as we want so badly to be together as a family in church but we have to keep Maura Rohama safe.  Until at least January, we will probably alternate attending so we can go and take Ash too.  Hopefully God will continue to heal her body and it won't be too much longer and folks can love on her with us!

Now, many people are asking what we are calling her.  We are calling her Maura Rohama.  She does not respond to Maura at all but she responds very rapidly to Rohama.  I don't know how long we will run the names together but right now, it's working well.  Just hearing "Rohama", she breaks out into a smile and our hearts melt - we will never take that away from her!

This is our first real weekend home as a family, so we put-up our Christmas tree.  Ashton was such a big helper and we had so much fun making memories together!  He laughed, giggled, and just squealed with delight as the tree came together with decorations...it just blessed my heart.  Maura Rohama slept through it all but I'm sure she'll be right in the middle of it all in just a few more years. 

Well, Christmas cards aren't going to be sent-out this year as we simply haven't had time to make pictures and get them developed and addressed....I'm so sorry!  Our hope is that you will enjoy the holidays and have a Merry Christmas!  Our God is so good!

Home from the hospital!

I don't have much time, but I did want to let everyone know that we are home from the hospital!  There's a lot that I want to post but it's almost 8:00 p.m. and I'm at the office after feeding my family and getting everyone settled and I still have to run to WalMart for formula.  Please pray for me as I try to get caught-up on cases and then start wrapping up cases and getting someone to take them over for me.  I'm quite overwhelmed right now and I'm more stressed than I've been in a long time! 

Thanks!
Erica

Santa came to visit!

I was SO looking forward to dressing-up Ash and Maura Rohama and taking them to get their picture made, but since we have to be so careful about exposing Maura Rohama to germs, that's not going to happen this year.  Well, my Daddy took care of that tonight when he arrived at the hospital with his Santa suit!  Ash had a blast and Maura Rohama actually let him hold her without crying!  We had a great evening together!

We are getting prepared to go home this weekend if everything goes okay.  I filled 7 presciptions tonight, so I am very grateful that the HR folks at Nissan worked with us in getting her on the insurance faster - we were told it would take 14 days at least but they expedited the process for us!  We are so thankful for insurance which provides us with the means to appropriately care for Maura Rohama's needs! 

By the way, Maura Rohama is doing so much better eating!  She hardly takes any F-100 anymore and what little she does take is mixed with Good Start Gentle Plus.  We discovered - thanks, Amber Wing - that the key is to get the bottle very, very warm.  The children's bottles at the transitional house are very, very warm, so that's what the kiddos are used to.  I's working like a charm!

Now, Does She Look Sick?

Playing with PaPa Tudor

Reaching for anything in sight!

Maura Rohama and Aunt BoBo

Well, we still don't have a lot of answers today, but we did get great news that Maura Rohama's galloping heart rate doesn't seem to be as pronounced.  Her heart rate is also better today and her breathing is great!  She did have fluid built-up around her heart and in her lungs, and thanks to lasiks, the fluid retention is much better too!  We are expecting to be discharged this weekend!!!!!!!!!!!!

We met the cardiologist who will be following her upon her discharge and have an appointment set-up for Thursday.  Dr. Dodd is also over the transplant team at Vanderbilt, so she brought part of her team with her to meet with us today.  We are hoping and most of all, praying, that the medicine will help strengthen Rohama's heart, however in the event that it doesn't, it is important that she is already being treated and has an established relationship with the transplant team.  Please don't stop praying for her healing!

We are still waiting for a lot of the labwork and specimen samples to come back but for now, the doctors are very pleased with her condition.  She will also be followed by the interational adoption clinic specialists, so she is getting occupational and physical therapy.  I cannot praise Vanderbilt's staff enough.  Also, I encourage all families with internationally adopted children to get hooked-up with a program of specialists focusing on this area.  Prior to our actually bringing Rohama home, I didn't think it was that big of a deal but now that I am in the thick of things per se, I am so glad that God stirred my heart to make a simple phone call setting-up an appointment!

Well, my baby is babbling and squealing with laughter, so it's time to go get some kisses!  Once again, thank you for the e-mails, blog comments, and most of all - prayers!

Patient at Vandy

Well, Maura Rohama slept great last night.  She finally took a bottle mixed 3/4 with F-100 and 1/4 Enfamil Lipil - we think she cooperated out of starvation as she has refused an identical bottle since 4 a.m. today.  We've mixed vanilla flavoring with it to enhance the taste but she still refuses to eat.  We are now trying Good Start, so we'll see if she's gets hungry enough later to take that - right now, she refuses that as well.  We are almost out of F-100, so she's going to have to eat something else soon.  We are working with a nutritionist, so hopefully we will get this resolved soon.

Right now, Maura Rohama is lying in her bed and watching "Nemo". She is babbling and blowing bubbles.  She is very happy and content, so that definitely helps lift our spirits.  Here's some phots of Vandy's perplexing patient:

As she continually reaches up and plays, nurses and doctors keep saying, "She doesn't appear sick!"  Well, we're still praying for miracles and healing, but in the meantime we are loving our adorable, playful blessing!

Don't come near her with a lab tray or she looks at you like this.  She is becoming very wary of new people!

One thing that I failed to mention yesterday was that we have been warned that she does not need to be exposed to a lot of people right now.  Dr. Fish, a cardiologist, stated that we must keep her away from church, social outings, neighbors, visiting family, etc. for right now.  He warned us to keep her visitors to a minimum until we can determine the root cause of her problem and see how she's going to respond to treatment.  So, I know lots of you want to meet her, but right now, we are asking that perhaps you call or e-mail to check on her in lieu of visiting....this is VERY hard for me as I am so excited to show her off, but we must protect Maura Rohama's health.  Even the tiniest sniffle or runny nose or sore throat could prove fatal to her right now, so we appreciate your cooperation and understanding.

So, I called my landlord for my office and my practice is shutting down for a little while.  I will be moving my office home at the end of December so I can focus my attention on my children.  I appreciate your prayers on this as we depend on my income as well but we are trusting God to provide - He always does.  Hopefully once Rohama is doing better, I can resume practicing mostly court-appointed cases for awhile and start to rebuild my practice.  I'm praying that God will give me direction, and I would appreciate your prayers about this as well.  This is such a scary time for my family but we are walking in faith and are expecting wonderful blessings from God and we know that He will provide for our every need. 

Last night, I broke the news to my grandmother that we will likely not be at our family Christmas gathering this year...this just breaks my heart but it is necessary in order to protect Maura's.  She said that she understood but I could hear the sadness in her voice.  We will also most likely miss the gathering for my father's side of the family which proves to be very frustrating because Dad has rented the facility for all his brothers and sisters and we were supposed to be heading it up.  I guess delegating is going to be used quite a bit to pull the function together without our actually being there!

Well, the team of doctors is supposed to come-in soon, so I must bathe and get ready for whatever today brings.  It's a beautiful day in Tennessee, so let's see what God has planned for today!

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!!!!!!!!!!!!

Heart Cath and Biopsy Tomorrow

Maura's hearth cath and biopsy is scheduled for 8:30 a.m. CST tomorrow (12/02/09).  Please pray that God will move mountains and heal our precious girl!

Prayers Urgently Needed!

This post comes from Leigh Tudor, Erica's sister.

I just spoke with my sister, Erica Tudor Reed. As you know, she and Jason just returned from Ethiopia on Saturday with my newly adopted niece, Maura Rohama. They took Maura to the International Adoption Clinic at Vanderbilt Children's Hospital for a check-up yesterday. The doctors admitted her with concerns of a heart condition, and they have been doing tests and waiting on lab results. The cardiologist came in this morning and looks like the probable diagnosis is cardiomyopathy (viral). There is severe damage to Maura's right ventricle, with significant amount of blood pooling.  She will be at Vanderbilt most likely through the weekend, at the very least.

In these types of cases:

• About 1/3 of patients' hearts recover and strengthen on their own.
• Another 1/3 can be controlled by medication without further damage or strengthening.
• The last 1/3 can expect to see gradual deterioration with compromised life expectancy.

The doctors may move Maura Rohama into Intensive Care, but at this point she is still in a regular room on the 6th floor of the Children's Hospital. She is happy and gurgling and blowing bubbles and smiling. A nutritionist is coming in later this morning to discuss diet and helping her put on weight.

Tomorrow, they may do a heart catheterization and/or a heart biopsy - both of which are risky procedures, especially for one so tiny.

These our specific prayer needs:

• We covet your prayers, first and foremost, for Maura Rohama. We ask for God's healing hand to touch and heal this sweet baby girl.
• We also pray for strength for our family to deal with whatever the prognosis may be.
• Please lift up Erica, Jason, and Ashton (my five year old nephew) and ask for God' to give them comfort and peace. They have been through so much to get Maura home, and she is truly loved.
• Pray for the doctors to be able to quickly diagnose and treat Maura. We long to have her home where she belongs.

Thank you so much for all your prayers, thoughts, and concerns. We feel your love, and know that God is in control.
Leigh Tudor