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.
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!
Lastly, a few photos from my brave boy from our stay at the hospital in August.
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.
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!