Friday, January 23, 2009

Reality Struggles...Very, Very Long

I would like to ask for some prayers. My mom mentioned to me the other day that the prayer of a righteous man is heard. Well, while most of you are women, I know the same holds true and I can’t think of a better prayer community other than my family, than those of you out there reading my blog, many of whom have been through the same experiences, to be asking for prayer from.

I have struggled with how much to put out there on this blog. I have always wanted to keep this blog upbeat and have wanted it to be an inspiration to families adopting from Russia and not scare anyone away. Thankfully, most of you out there have received your referrals or come home now (YAY Joy!). However, I need this outlet to write more freely about some issues with Daniel.

First and foremost, the issues I am going to be talking about are medical, not behavior related as Daniel appears to have adjusted beautifully and thankfully we do not/have not seen any behavior issues at all (besides what we believe are normal toddler issues). Daniel is the light of our lives. He’s growing, he’s happy, and he is our son. I’m not saying the last part to solidify my feelings but to just say that he couldn’t be anymore our son than if we had had him biologically. Daniel fits right into this family. He has the same sense of humor and sometimes he evens ‘gets’ me with his attitudes and you can just see this little crinkle in the corner of his eye and know that he is playing with you. It’s quite amazing how much he looks like Troy, but even more amazing how much he acts, does things and even has some of the same small issues that our family has. God truly chose Daniel for us and I thank Him every day.

When we received his referral we received a small amount of medical information. It contained big words that we couldn’t even pronounce like “hydronephrosis” (of the left kidney) and ureteroureteroanastomosis of which there had been two previous surgeries. We immediately fell in love with his photo of course, but were lucky enough to have two doctors look at the limited information immediately. One, who has adopted children of his own, said his picture looked great, and that the limited information should not keep us from traveling to see the child. The other was more in depth and stated that it sounds like urinary reflux and explained that the severity of it was what caused the hydronephrosis or swelling of the left kidney.

After staring at Daniel’s photo, Troy and I decided that this was God’s gift to us and that no matter how scary the medical looked, this child was meant for us. This condition is even something that could have happened to our own biological children. Urinary reflux is not that uncommon in little boys.

So there begins our adoption story which you all have read. I am working on a more complete version of our story as we also did not post much about our actual process in Russia. For instance, our last visit with Daniel on trip one was actually a drive from the baby home in Votkinsk to the City of Izhevsk to drop him at the hospital for routine testing. Our last vision was leaving him standing next to a representative in a hospital still bundled in his coat. Talk about hard. Our representative rushed us away for good reason. Our second trip, Daniel had been moved to another children’s hospital where we spent our days visiting him. We actually picked him up from the hospital and not the orphanage. He was still there because of an outbreak of chicken pox within the orphanage, but after we left him, he had never returned to the orphanage and therefore had never received our photo book, blanket, toy etc. They were all lovingly returned to us and of course this is not an upset in our lives, although we wished he had at least had the photos. At any rate, if anyone out there is interested in a very long version of our time spent in Russia, you can leave a comment or email me using the sidebar and clicking “Email Us”. Please don’t feel obligated to ask for a copy. I did this for us and our family, but am willing to share with those of you who have/are adopting and would like some very in-depth information.

I digress...

When seeing Daniel for the first time, we gained a lot of medical information. Immediately we looked at Daniel looking for hints of his problems. He was very normal, growing, had great color and was otherwise extremely healthy. We wrote down so much medical information that day that it took up pages and pages of my steno pad. That night we emailed our IAD and were lucky enough to trade several emails with him. We even emailed him that we were willing to go through additional surgeries. In the end we decided that regardless of anything scary, there was no way we were not adopting our son. Daniel’s condition is serious, but manageable and God chose us to manage it.

Upon coming home with Daniel we went through the whole IA clinic and all of his bloodwork, hearing etc. is normal. We were then scheduled to see a pediatric urologist. Our first visit was an ultrasound, followed up by a conference with the doctor. While in Russia we asked for a complete copy of Daniel’s medical record at the orphanage. We pretty much knew the answer would be no, but we made our case anyway and even though the answer was still no, once we returned home, Daniel’s medical file miraculously appeared completely translated in our email box one day. We can’t even begin to tell you the number of times God stepped in and aided our adoption.

Round One: Ultrasound. The urologist said we needed further tests. Put on a medication to prevent urinary tract infections.

Round Two: Daniel had to be put to sleep for a long xray test where they put a radioactive isotope in his blood stream and watch the functioning of the kidneys, followed by some bladder tests and conference with the doctor.

The result: Daniel’s left kidney was still swollen from the urinary reflux, but it was still a good working kidney. Instead of functioning 50/50, they are functioning 70/30. This is great news because this means his kidney does not have to come out. The bad news: immediate surgery to try to correct the severity of the reflux and to remove an obstruction in his bladder which has enlarged it.

Two days later at the beginning of August we spent 3 nights at the hospital after a 4 and 1/2 hour major surgery with a major incision (bikini line, if boys wore bikinis :) ). To say I was in shock at how quick this was happening is putting it mildly. I sat in the doctor’s office and sobbed when they told me they wanted to operate right away. When they took him away from me for the surgery I was a mess. Troy had to take me outside before I could face our families waiting in the waiting room for us to return. Four and half hours later we were able to hold him and I spent the first night with him in my arms and most of the four days thereafter. I think that stay in the hospital really sealed our bond. Because they were unable to put us into a private room due to the number of children, only one parent could stay. Troy knew I wouldn’t be leaving and gracefully spent the days with us and left me at night. Daniel would not let me out of his sight. If I had to run to the bathroom I would have to call a nurse because he would cry and cry for me. To say I learned the art of what I now affectionately call “speed peeing” is an understatement! TMI – I know, I know...!!

At any rate they elongated his tube on the left side, removed the obstruction in his bladder and circumcised him all at once. Circumcision is something we would have done anyway, but with Daniel’s condition it is a must as it prevents infections and allows a freer flow of urine. We spent some time recovering from that surgery, including spending a whole day on the phone with doctors because once home Daniel slept something like 27 hours straight and I was terrified. And I do mean “we” spent time recovering!

Round Three: A visit to a dermatologist for itchy bumps appearing on Daniel, turns out to be a reaction to medicine we can’t take him off of.

Round Four: A simple follow up ultrasound and the news was the kidney is the same, more tests required.

Fast forward to two days ago:

Round Five: A full day at the hospital for tests followed by a conference with the doctor. Tests were not conclusive. Appears to be some leftover reflux, but can’t tell the severity. The bladder has become his biggest issue. It is too big and they can’t tell if he isn’t emptying it due to all the work that has been done previously (he had two prior surgeries in Russia) or if it could possibly neurological. The doctor stated that if it was neurological that Daniel would be a tiny handful of children that have no other neurological problems except this one. Very unusual, but possible, since Daniel has no other problems.

The result: More tests. We are waiting for a date, most likely a month or two out, and these tests will be pretty extensive and it will be another tough day at the hospital.

I have to say Daniel is wonderful. The doctors tell me over and over how amazing Daniel is. He doesn’t cry for the most part (mostly not painful procedures, or he is sedated) and he puts his finger in the heart monitor thingy without being asked, he holds the stethoscope piece and moves it where they tell him too and everything. Through all these tests I am allowed to remain by his side even if he’s asleep and I am so thankful for that.

At any rate, I wanted to be able to talk openly on my blog about everything Daniel. This blog is after all about, not only our journey to Russia, but our journey through life.

So I’m asking for prayers to heal Daniel’s bladder and left kidney and thanks to God for the perfect right kidney and otherwise wonderful health. Also prayers for Troy and I as we face all the medical issues and tests would be appreciated.

I want to reinterate how happy and healthy otherwise Daniel is. This issue is not hindering him in any way to be a normal child. You can’t look at him and see anything wrong and in our eyes Daniel is just right!!

Again, I don’t want to deter anyone adopting from Russia as I still hope to adopt again one day should that be God’s plan for us. In fact, this adoption has been proof to me of how hard God works. Imagine all the steps He took to lead Troy and I all the way to Russia to find one very special little boy!
(Also, still trying to read your blogs, it's been a crazy week.)

Lastly, a few photos from my brave boy from our stay at the hospital in August.
Not so happy about the surgery and waiting for them to give me loopy medicine before taking me away from Mama and Papa
Day 1 after surgery. Mama wouldn't put me down and I wouldn't let her!
Granny watching over me on Day 2. Mama gave me a sponge bath and got me out of the hospital gown with Granny's help. We had to cut sleeves to allow for IVs.
Feeling much better here. I have my mouth full of banana and I tricked the nurses into thinking my cat was real!
Leaving the hospital. I refused to lay back, but couldn't sit up so I know I look funny. Plus I had something like 4 stuffed animals, shoved in around me, not to mention the balloons mom had to hold down to see where she was going.

Here I am in Mama and Papa's bed. I hurt from laying on my back so we (well Mama and Granny) figured out how to get me on my tummy without hurting my incision and boy I zonked some z's. Mom was terrified because I slept for 27 plus hours, but gees, have you stayed in a hospital lately? They wake you up constantly. I did manage to clap when I opened my eyes for a moment and Mama said "We're home!"

Playing a couple of days later. I took it easy!

32 comments:

Amy said...

Rachel - THANK YOU for sharing your story. I appreciate hearing everything -- the goods, the bads etc.

Daniel is in my prayers! Keep us posted.

Tami said...

Don't ever feel like you need to shield us from the bad stuff. That's what friends are for...to lift you up in prayer when you need it most. Life is full of good stuff, and yucky stuff, no matter where you find your children. And you've got one special little boy there! :)
You are all in our prayers. ((hugs))

Jackie said...

Oh Rachel! I am definitely praying for you, Troy and Daniel! I am so glad that you shared that, because now I can pray specifically! You are an AMAZING MOM!!

Teresa said...

Hi Rachel, He is just such a trooper - This must have been so difficult for all of you. I am thinking about you and prayers are going to Daniel and you all. You can just see the bond you all have - such adorable pictures!
Take care...Teresa

Patti said...

Rachel, thank you for sharing. I will definitely be praying for Daniel to be healed. I am sure you and Troy need prayers as well, as I know watching Daniel going through all of this is hard on mom and dad as well. Please keep us updated on how things are going.

Carolynn and Steve said...

Dearest Rachel,

Thank you so very much for sharing all of this with us. You, Troy, Daniel, and your entire family are in my prayers. Please know that whatever you need, we are here for you...all you have to do is ask.

Big hugs from me to you...hang in there sweetie, and know that you're in my heart through all this. Much, much love

True Story said...

I love how you said, "God works HARD". And He is so amazing because He is never done.
I am praying for your beautiful boy!
Sandy

Janine said...

Rachel, I'm so sorry you have been through so much and we didn't know!! Daniel and his mama and papa, you are in my prayers. What a brave little guy. Just breaks your heart to see a little one in the hospital and he was so brave!!

I'm glad everything is going so well. Hopefully with all the tests this kidney/urinary mystery will soon be solved.

Roger and Joanne said...

Oh Rachel...I'm so sorry to hear all that you three have endured. I, also, appreciate your pure honesty. Thank you for sharing your story. (I knew they all couldn't be Perfect). It brings reality to adoption and for that I'm truly grateful. I'm sure I would have adopted Daniel, too.
I will send all the best possible wishes and thoughts for Daniel. Please keep us posted. You are wonderful parents!

Tiger & Kar said...

Rachel - thanks for sharing this with us so we can all left up specific prayers for you, Daniel & the rest of your family. What a special little boy he is, and what amazing parents you & Troy are!

Hugs!
Karyn

Michael and Carrie said...

Hi Rachel-I know this has been a very difficult situation for your family. Daniel seems like a very happy and well-adjusted child who has been with you forever, even though you've only had him about 8 months. We will pray for his left kidney and bladder and know that God has the power to heal Daniel. We will also pray that God would give you guidance and strength as you prepare for the upcoming tests. We're here for you whenever you need to chat or just share what is going on.

Carey and Norman said...

Rachel,

I'm so sorry to hear about your recent trip to the hospital for more tests. Little Daniel has been such a trooper during all his testing and his surgery. I will continue to pray for your family as you face additional testing and surgery. I will pray that God heal Daniel, so he does not have to continue having additional surgeries and testing.

Loved the hospital pictures...what a cutie batootie...even in the hospital gown :o)

Gary & Rosalie Clute said...

Thanks for the update - our thoughts and prayers are with you.

Dede said...

I'm sorry to hear that little Daniel has already been through so much. My prayers are with him. Thanks for sharing his story with us.

Mary & Michael said...

Oh Rachel, I will be praying for you, Daniel & Troy. You all have been through a lot since he came home and you kept it so quiet. Thanks for letting us share.

Kim Abraham said...

Rachel,

You have always been there to provide support, encouragement and prayers for so many adoptive families. I am THANKFUL you shared your story so we can do the same for you! One of our boys has experience with a pediatric urologist at Vanderbilt Children's Hospital and I understand that it is no fun (and downright scary) for the parent or child. I'll be praying for you, Troy and little Daniel.

Old DAN AND Little ANN said...

How frustrating to of gone through all that and still not be at the end of it! I really pray you will get some conclusive test results with a clear plan of action. Better yet...I like the healing idea!

Kim said...

Rachel, I will definitely pray for you. God is amazing and he will work wonders in Daniel's life. He created your family and will watch over you always.

Thank you for posting this story and never apologize for keeping it real. It helps us all as we journey through life to know that there are others that struggle too.

Kim

Meghan, Bill and Nick said...

Rachel,

We're thinking and praying for you, Troy and Daniel as you guys go through this tough time.

Hugs from Richmond!

Becky and Keith said...

Oh Rachel!

I feel like such a horrible friend for not being there for you through this last round of tests. I am so glad you shared all of this and you have so many people (including us!) keeping you all in their prayers. You are such an awesome mom and I have been so blessed to be able to call you my friend! Please know that no matter how bogged down I am, I am ALWAYS here for you - just holler!!

Many hugs to the 3 of you!
Becky

P.S. We were watching pictures come across my computer screen the other day and the pic of Andrew and Daniel in the sand came up. Andrew pipes right up and says "Where is my friend Daniel?" I said "He's with his mommy." He said "Whhhhhyyyyyy?? I want to go see him and play!" :-)

Heather and John said...

It is always nice to read the good and bad, no ones situation is perfect. You are so blessed to have such a little trooper through all of this. Our prayer are with all of you!

Jenny and Randy said...

Oh Rachel, I am so sorry to hear Daniel (and his parents!) continues to have to go through all of this. As you know, it is an issue near and dear to our hearts, and all three of you will be in our prayers. Please keep us posted, as we will cetainly be thinking about you guys. Praise God for Daniel's healthy kidney, for his sweet disposition as he goes through all of this, and for his loving parents who are working so hard to help him get better!

How is Troy's hearing, by the way? We continue to pray over that as well.

Craig and Phyllis said...

I just got to read your post. I will definitely be praying for God's healing of Daniel and for you and Troy. Thank you for sharing what is happening in your lives. Isn't our God amazing?! When He takes parents from one country and gets them connected to their child/children on the other side of the world, it is mind boggeling!

Tony and Dawn said...

If there is one thing our adoption taught us, it was the power of prayer. Girl, I wish you had let us known! Be assured you are part of our prayers! Please keep us up to date on the progress he is making. God Bless -

Shane and Kathy Gebhardt said...

Wow! You have handled a lot! However, I must say that you have done it with such grace. The Lord definitely picked you to be the perfect parents for Daniel.

God's Blessings to your family.

Say, if you get a minute...I tagged you on my blog. I completely understand if you are not up for this, though.

You are in my thoughts and prayers.

Kristine and John said...

Dear Lord, We lift Daniel up to you and we ask that you would heal him. You are the Lord of Lords and you are in control of everything. Please Lord be with Rachel and Troy and give them strength and wisdom to make the right decisions for Daniel and please provide the wisdom that the specialists need to understand Daniel's condition. Lord, you gave this child to this wonderful family for a reason. They all are a blessing to each other. May they grow closer to each other and especially to you through all of this. Thank you Lord for all you do for us and for the excellent medical care that Daniel can receive in this country. We praise you for the promises you have given us and we praise you Lord for what you already have planned for this beautiful boy and his loving parents. Please give all of them peace through all of this. We ask all of this in Jesus precious name. Amen.

Rachel, thank you so much for sharing your story. I will be praying with expectation of great things to come. In Philippians 4:6it says "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God". It is hard for us to not be anxious, especially when it has to do with our children, but I hope you will be able to give it all to Him... Let go and Let God.

Hugs to you!

Kristine

Sira said...

Oh friend! I am so sorry I am just learning about this- Please Rachel keep blogging about this, so you can open up about it I am praying for all of you. This isn't an adoptive issue anymore- its a parent's issue my love

Susan said...

Wow, you guys have been through so much. I'm so glad you shared all this so you can add more prayer warriors to your side.

I will be praying for Daniel and you and Troy and pray that the doctors will be able to get everything sorted out and Daniel will be healed.

Shane & Marie said...

Rachel, I am so sorry to hear what Daniel, Troy and you have been going through. Thank you for being honest! Daniel sounds like such a trooper and an amazing little boy. I will pray that everything works out!

Chris said...

Thanks for sharing your medical journey with Daniel. All of you are in our prayers, and I'm sure that everything will be fine. Daniel sounds like a real trooper, and I think your love could get him through anything!

Anonymous said...

Hi Rachel, I am finally catching up on reading the blogs...thanks for sharing your story. Your beautiful boy is in my thoughts and prayers! Donna

Kim Abraham said...

Rachel,

I really appreciate the details you wrote about Daniel's condition. I mentioned earlier that one of our boys had a problem where he has to see a pediatric urologist every year (retractable testes.) Well, now my 6 year old is going in for an ultrasound to discover the cause of reoccurring UTIs. His doctor thinks it may be "urinary reflux" and his kidney could be in danger. I was doing some research when I remembered your post about Daniel so I popped back over to your blog to read it again. It is comforting to know someone who has been though this and to read a little about what to expect. I hope the additional tests Daniel needed came out okay.

I'm also very glad to hear that Daniel is doing great with potty training.