November 17, 2008

National Adoption Awareness Month part 8 (SN adoptions)

When we first started out in the adoption process, we didn’t start out pursuing a special needs adoption. Without repeating our story all over again (see this blog entry for background information), our journey to Josie was complicated and a little bit controversial. In this entry, I’d like to talk about our personal experience with a SN adoption and specifically a child with a severe heart condition and an extra thumb on her right hand.

Although we thought we understood Josie’s heart condition prior to our trip to China, it wasn’t until we had her in our arms did we really understand what her condition was all about. Josie has TOF (Tetralogy of Fallot). She had four things wrong with her heart and you can click here to find out more information on this condition. In most cases, surgery is done immediately on the infant to correct these problems. She was 21 months when we got her and her heart had not been treated at all. She would often turn blue and had severe shortness of breath when she did much exercising or eating. She was very small for her age (she was wearing size 9 month clothes at 21 months old) and physically she appeared much more like a 12 month old than a 21 month old. I had been in contact with another adoptive mother (thanks, Jeanne) whose son also has the same heart condition as Josie and she was wonderful in reassuring me that we could get through this.

We arrived home on a Wednesday night and by Tuesday of the following week; we were sitting in our cardiologist’s office making plans to have her referred across the state to the University of Michigan Mott's Children’s Hospital for heart surgery. During this period of time, Josie was still uncomfortable with anyone (including Chris) holding her, let alone examine her. You can only imagine the kinds of screaming episodes that went on during those appointments. Keep in mind, with her fragile heart, we were trying to keep her as calm as possible. During most of her required medical exams, she was a very angry little girl. She resembled a wild animal. It was heart breaking. We ended up having her sedated during most of the exams because she was so out of control. Poor Josie had no idea why we were subjecting her to so many strange people, strange equipment, and uncomfortable pokes.

Josie’s heart surgery took place on April 23, 2008 and was a complete success. I’m not going to sugar-coat our experience with Josie in the hospital, it was wicked. When she was out of ICU and awake, she was wild with fear. It broke my heart to see them have to restrain her arms, but it was necessary until all the equipment could be removed from her. She refused to sleep in her bed and so I would sit up all night in a chair with pillows propped under my arms holding her surrounded by medical equipment, beeping machines and staff checking on her vitals every 30 minutes. Her spicy personality was definitely showing through. She was supposed to have been in the hospital at minimum 10 – 12 days, but she came home in 5 days. I still have a whole new respect for the doctors and nurses who did everything they could to treat Josie and make her comfortable. They were an amazing group of people.

By the time we left the hospital, I looked like death warmed over. I was beyond sleep deprived. I wasn’t going to post this picture of myself, but I feel it paints a very real picture of what I was going through at the time.

On the first day that we came home, Josie was so happy to see her big sister and her house, that she spent the entire evening touching everything. It was almost as though she needed to be reassured that she was really home.

For the next month, we had visiting nurses descent upon our home on a weekly basis to check her vitals. She hated the visiting nurses, but it was better than making a zillion trips to our cardiologist’s office. We are now on a six month maintenance schedule with Josie’s local cardiologist. She’s no longer on any heart medications and her physical activity is no longer restricted. She’s gained six pounds and grown three inches since our March Gotcha date. She’s now wearing size 18 month clothes and I’m starting to think we can almost move into 24 month shirts. She no longer turns blue or pants when she’s eating or exercising. At some point, she may need a valve replacement, but the timeline is sketchy. We couldn’t be more pleased with her progress and diagnosis. She is truly not the same little girl that we received on March 16, 2008.

Our next big medical intervention is Josie’s upcoming hand surgery. Our special little girl was born with an extra thumb on her right hand and prior to her heart surgery, we did visit a hand specialist. Obviously, we were more worried about her heart than her hand. Now that her heart is stable, we’ve decided to move forward with her corrective hand surgery. She’ll be casted from finger tips to her shoulder for five weeks while her hand heals. Considering everything she’s gone through, I’m hopeful that she’ll adapt to her casted arm quickly. I’ll be curious to see whether this experience will make her more of a lefty than a righty. Right now she goes back and forth between both hands for eating, coloring and playing.

Chris and I were reflecting the other night about our experiences with a SN adoption. It’s not for the faint of heart. It’s certainly not something we would have pursued if we didn’t have the full support of our entire families or each other. It’s emotionally, physically and financially draining. Don’t get me wrong…I had my moments of “what have we done!!!” but it’s been well worth it in the end.

I’m going to just throw it out there because I’m being honest in this post, if your child requires medical intervention and hospitalization, it’s extremely expensive and having good medical coverage is absolutely necessary with a SN adoption. Chris’s medical insurance is amazing. Josie’s medical bills have topped over $60,000 for just her heart surgery alone. We are so fortunate to have the medical insurance we have. If our insurance would not have covered Josie heart surgery, we would have had to deny her referral. I can’t imagine life without her now.

Many of my adoptive blogging friends have SN adoptions. Some of them have children whose medical needs were corrected before they received them. Others have children who are actively seeking medical treatment right now. I think most of them would agree that the addition of a child with special needs was one of the greatest experiences of their lives, but adding a child with special needs to your family requires realistic and objective decision making.

I have several readers who are just about to embark on their first SN adoption and they would love to hear any and all feedback. I’d love to hear from you on your own experiences (the good the bad and the ugly).


Blessed Mom of Four, Now Five said...

Oh Kim, our heart to heart connection is one only God can explain or truly understand. I thank you for all of your prayers for us.
And, yes, adopting our Ellie has been by far one of the most blessed experiences of our life. But, it, too has been one of the most challenging.
I thank God for his mercies that are new every morning. I look forward to that fresh flow of mercy tomorrow after our news today.
But, I know Him, who holds tomorrow, the Great I Am, and He walks with me, and He walks with you, and He has made all things beautiful in His time.
Blessings from south Georgia,

redmaryjanes said...

Another fantastic post. I appreciate your honesty and that you are telling the good and the difficult sides of SN adoption.

The Young's said...

It really is amazing to look back at what you guys have been going through! And now...Josie is about to spend her first Christmas with you guys! Wow! That is so amazing!!!

Like you...we didn't go into the adoption process for a "special needs" child....and really, I don't consider Sadie having a special need. Although she sees a cardiologist...she has no health issues at all. BUT....all that to say, if we wouldn't have considered special needs...we wouldn't have our precious little Sadie. Thanks for sharing your heart...your ups AND downs of your adoption. Sometimes I feel that we all just show the "good" stuff and not to "real" stuff. It's through sharing our struggles that we can connect...because we all have those days of struggle. You guys are awesome! Thanks for sharing!! Hope you have a great day!
Love ya,

Truly Blessed! said...


I love that you're sharing your family's story, Josie's story...the good, the bad and the ugly. It's so important that prospective adoptive parents read this type of story -- especially those who are considering switching to the SN program (I really pray this type of story helps them understand the WHY of their desire to switch -- is it just to get a referral and a child more quickly? If so, maybe this will be an eye-opening post for them to read...).

We have been so incredibly blessed with both of our girls, and our "SN" child has been amazing "easy" -- so far. Of course, we have no idea if she will also require a heart surgery to correct her VSD, but if she does, we'll get through it. And I just might have to call you for tips and ideas on how to best get through it!

I'm serious about getting together with you and Kimberley (aka redmaryjanes) -- how about meeting up at the Children's Museum to play?

Your girls are both so beautiful and I'm sure they bring you so much joy.

Nicole said...

As always, Kim, your posts are wonderful. I really need to do some posts like that to show our side of SN adoption... I just don't know where to start...


Shanna said...

Thanks again for another wonderful post!

Our two SN kids are the absolute joy of our lives!! Certainly we have had our share of ups and downs, but without a doubt, the most challenging things in life are also the most rewarding. Our son Kai, was born cleft affected. As far as I am concerned, it has been a non-issue. Our Chloe had regurgitation of her tricuspid valve. Actually, we had no idea what we were in for. We were told to be prepared for anything. Imagine our surprise when we received perfectly healthy child!!

That being said, I would say that the most challenging things have been the emotional issues. Our hearts have had to be in overdrive to keep up with the many bazaar behaviors, fears, angry outbursts, tantrums, and tears that have come from our precious babes. At the end of a difficult day, when that sweet child of mine cuddles close as he/she possibly can and says, "I love you", it makes it ALL worth it.

I am a better person because on my children. I thank God each and every day for the tremendous blessing He gave us in our sweet ones. I feel so unworthy to receive such favor from The Father.

Jeanne said...

I love your description of the eyes wide open approach. I would not change any of our decisions looking back though a lens of 1 and 1/2 years. We were very careful to make sure we could deal with the things Josh would need.
I think we under estimated how hard the emotional aspects of this were in the begining, and also under estimaed the joy we have had as a family watching Josh come into his own. It is like watching growth and development with time lapse photograpy!We have been well and truely blessed! Jeanne

Angela said...

Beautiful. For anyone considering Cleft lip/cleft palette, I would say the surgeries are less terrifying that open heart, but language is an issue. Not just up front, but the tone and quality for life. Others have over come which make us believe our little guy will as well. But frankly I said yes to him before I understood all the issues.