January 26, 2013

catching up

I finally have some time to sit and fill you in on the last few days of our lives.

I am so thankful to be home for the day today with our precious children who have not seen me very much over the last two weeks.  Anthony is at the hospital loving every moment he has with his oldest daughter.  We live two hours away from the hospital--it's been a challenge, to say the least.  But God is so faithful, isn't He?  No sooner do those feelings of weariness and fatigue rise up in my heart, when He meets me right where I am in this season and His glorious peace washes over my soul.

It is good to be in the presence of the Lord!

Goodness, where do I even begin?

Let me start by saying that I am so grateful to my friend, Elizabeth, who shared the last updates for me.  She certainly has been a God-send in these last couple of weeks.  Elizabeth is a fabulous doctor with extensive knowledge on children in Hasya's condition.  She has graciously taken me by the hand and walked me through every decision we have needed to make (some in a huge hurry!).  Would you please remember Elizabeth in your prayers as she fights her own battle with cancer?  Her health has not been very good recently and I know your prayers would mean the absolute world to her.  She is one of the kindest people ever. Thanks!

Okay, so let me backtrack a little....

The last two days in Bulgaria were hard.  We noticed that Hasya seemed to be struggling. She was so fussy and little by little, she began refusing to eat. The flights home were excruciating for her!  By the time we arrived home very late last Saturday night she was just not doing well.

As you all know from Elizabeth's updates, we ended up in the ER on Monday.  Hasya was weak, lethargic and refusing to take anything by mouth.  The experience was, quite honestly, a medical disaster! We were discharged with a prescription for thrush, mouthwash, and instructions to, "Feed her with a syringe because," as the ER doctor said, "you have a lot of experience and many children so you can handle this at home."

Nothing I said mattered.  No one listened.

By the time Tuesday morning arrived, Hasya was unresponsive.  We could not wake her up.  Frightening!  My family doctor called the hospital and we were told to go back through the same ER in order to have her admitted.

No thanks!

Within minutes I had Hasya in the car and we rushed to Denver to their incredible Children's Hospital there.

The moment the staff saw me walk through the door, there was a frenzy of activity!  I cannot even tell you how relieved I was!  Within minutes there was a team of people working on her and stabilizing her--her blood pressure was so low and her heart rate so high. 

And so it has been since last Tuesday.  Hasya has been blessed to be receiving the best of the best medical care.  Nothing has been too much for the staff!  Nothing has been off limits.  They have gone out of their way to ensure that our sweet girl is brought back to health and that she is receiving everything that she deserves.  I have cried many tears of gratitude.  I look at that tiny little body lying in a big bed and my heart is so thankful that for the first time in her life she is receiving proper medical attention.  It just makes me cry.

How is she doing?  So much better!  Hasya has been receiving nutrition via an NG tube for the past three days.  Her body is responding so well to the high-calorie formula.  She has even gained a few grams!  Hallelujah!  We'll take it!  Being as malnourished as she is, her body has to be fed incredibly slowly.  Every day her nutrition is being increased ever so slowly until they feel that her body can handle one full bolus (feeding) at a time.  At that point, continuous feeds will stop and she will receive three "meals" a day by feeding tube.  We still have a way to go before she reaches that point--but that's the goal.

Two days ago I sobbed like a baby.  Hasya was upset over having her blood drawn (for the hundredth time!).  She began to cry.  For the very first time since I have known her (including when we met last August), she cried real tears!  Tears actually rolled down her cheeks!  Not once I have ever seen tears--she only makes a crying sound, but she has been dry.  Dehydrated!  For so many years.  For the first time now her body is actually hydrated. I ache at the unfairness of it all.

While there truly has been such hope, such healing, I must be honest that there has also been much pain.  Anthony and I have had emotional moments of struggling to come to terms with the reality that has been her life. We have had times of wrestling to reconcile everything that Hasya has been through in our own hearts. Some things have been hard to hear. While in Bulgaria I was so convinced that Hasya was refluxing.  She would gulp down air constantly and her stomach made constant noises as it became filled with gas.  Reflux!  I was convinced. It turns out that it was not that at all.  We learned this week that Hasya swallows air on purpose--a way of keeping her little belly full and keeping hunger pangs away.  Broke my heart!

Just as Anthony shared this week, I too cannot help but think of the many others just like our Hasya. The ones we had to leave behind.

I pray that we never, ever forget!

So next week Hasya will have a permanent feeding tube inserted.  Anthony and I have prayed and sought much advise on this decision.  We have vacillated and had moments where we have wondered if it truly is right for her. This (feeding tubes) is such a new journey for us. After much wise counsel we are now fully convinced that a G tube is the best thing for Hasya.  For one, having a nasogastric tube down her nose for the next months is not what we want for our daughter!  We want her to have the best possible quality of life. We will go to the ends of the earth to make her life as comfortable as possible from here on.  And secondly, by having a feeding tube, it enables us to reintroduce foods by mouth (which she is so not interested in right now!) slowly and safely--without having the stress of trying to get good nutrition in her. We have absolute peace in the decision to give her a G tube and feel like it is the best way to nourish her and help her to become as strong as she can be.

Elizabeth did mention in her post about Hasya's bones.  Over the past few days it has become even clearer that we are going to have to walk a very cautious road as far as her bones and her spine go.  With a 33-degree curve on her spine, major surgery is certainly in the future.  The other concern is that she has bilateral hip dysplasia--can also cause many complications as she becomes more weight bearing.  This dysplasia means that she does not have nice concave hip sockets.  Since she's been in a crib her entire life, the sockets never formed, and therefore, the bones are flat.

Seizures, profound loss of bone mass (we will know the full extent on Monday when they do a DEXA scan), feeding tubes, spinal issues, poor eyesight due to zero intervention, braces, splints, wheelchairs, adaptive equipment, contractures, and who knows how much I have missed....it's a lot!  But you know what?

She is worth it!

Hasya is worth every surgery, every medical bill, every change we need to make to our home, every concern for her future and every doctors appointment (and there will be many!) we will ever need to take her too.

She is so absolutely worth it.

Her life matters!

One of my greatest joys in the midst of the challenges this week has been seeing every single person in that hospital fall in love with this tiny little being.  I have been asked countless times if I am absolutely positive that she will be 15 next month (she is now weighing a little over 26 pounds). They admit that they never see this--even in such a large children's hospital.  People just do not know that neglect such as this exists around the world. How her life is showing them what HOPE looks like!  Jesus shines through her in every smile she manages to give and every hand she clutches onto simply for the need to have human contact.

They are seeing that every single child has HOPE.

They just need to be given a chance.

We are so deeply in love and cannot stop thanking the Lord for choosing us--two very uneducated and unprepared people for this journey...

...but we are willing.

We feel so overwhelmingly blessed by this precious gift from heaven.

Thank you for your prayers.  They truly do mean the world to my family in this season.  I will continue to post prayer requests (mainly on FB as it is quicker--you are welcome to follow along) and I will try to keep you all updated as much as possible.  Thank you for blessing me with your kind comments and the many e-mails I have received.  I cannot even begin to tell you how much I appreciate your love poured out. 

Now back to my lovies here at home. Thank you for journeying with me and for believing that God will restore everything that has been stolen from our precious oldest child.

We believe!



 

4 sweet thoughts from friends:

Mark and Melanie said...

Oh Adéye, as usual I am in tears reading about your precious daughter and what she has endured. So thankful for the wonderful care Hasya is receiving and that you can spend some time at home as well. Praying for all of you!

K said...

It's so good to hear from you and know you are at home for the moment. My prayers are with your family every day. I'll never forget the first time I saw Hasya's picture and how my heart rejoiced six months later when I learned she had a family. I know you were worried about the trip home, as was I, but Hasya did make it, a great tribute to your love and skill as a mother and by the grace of God, and I can only imagine your feelings, as you say, that she's getting medical care for the first time in her entire life. I can see that she is a joy, through her suffering and the condition of her body, she can only be honest and Christ-like in all she does. She will be such a blessing in your lives and the lives of all she touches.

Allison said...

Came across your blog through several clicks. Many prayers coming from Tennessee. You have opened my eyes to a world I have never known. That children could be treated this way in an EU country is appalling. God bless you for your calling. Your babies are all precious and equal in God's eyes. I wish the world could see it more often.

Megan said...

Thank you so much for the update Adeye! I've been following your journey with Hasya and will pray for her and your entire family. Is your facebook linked to your blog? I had trouble finding it, but would love to keep up more there. God bless!

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