So Sorry!

photo (35)I kind of just left you all hanging!  My apologies.  It has been a crazy busy week trying to catch up from being in the hospital and everything else that always seems to happen all at once.  We do have some very good news to share!  Let me start at the beginning just in case.  On Friday we conferenced with our primary doctors about some concerning activity we had been seeing during Hope’s meals.  She was having myoclonic jerks in her arm and then began having episodes of zoning out that highly resembled absence seizures.  They had written us a referral to a neurologist earlier, but her episodes were progressively getting worse, quite quickly, and everyone agreed that we should go to the emergency room to get her looked at immediately.

Early the next morning we left.  Because her episodes only happened at meals (and there were no other meals that day at this point), we felt comfortable waiting.  We also knew we would be able to trigger her episodes for the doctors in the hospital for observation.  A girl’s gotta eat, right?!  So we spent two days there.  We came away with more questions than answers.  Her CT scan revealed a brain bleed which may or may not be causing her episodes.  An EEG showed no epileptic activity, praise God!  So she is not having seizures, exactly, though she is high risk for them at this time between her myoclonus and the brain bleed.

We are still not sure what is causing the bleed or how long it has been going on.  They said it could be several months old or even older.  They also found evidence that it is still bleeding, at least a little, but don’t think her shunt is causing it.  Without any other information we can’t really do anything about it at this point, and she’s not in immediate danger.  So we are going back in a couple of weeks to reevaluate the situation.

After getting home from the hospital we began to see some slow improvement in her episodes.  She is still having them, but they seem to be slowly tapering off.  Another praise God moment!  We have some theories as to what is going on, but we really don’t know, and maybe we won’t ever know.  But the important thing is that right now she is healthy and just as sweet and joyful as ever.  We had a scare over the weekend that we might need to do immediate surgery for her bleeding, what a terrifying thought.  I am more grateful than ever for the health of my children.  Lord thank you for preserving our family through this little bump!  Lots of other things to update, but for now it’s bedtime.

Christ keep you all.

In Unexpected Events…

Lord, allow me to greet the coming day in peace. Help me in all things to rely upon Your holy will. Reveal Your will to me every hour of the day. Bless my dealings with all people. Teach me to treat all who come to me throughout the day with peace of soul, and with firm conviction that Your will governs all. In all my words and deeds guide my thoughts and feelings. In unexpected events, let me not forget that all are sent by You. Teach me to act firmly and wisely, without embittering or embarrassing others. Give me strength to bear the labors of this day. Direct my will, teach me to pray, pray in me. Amen

I discovered this little morning prayer last year and it has become one of my favorites.  It also just happens to be the perfect prayer for a hospital stay.  Wisdom, peace, guidance in dealing with the many, many people who He sends to care for us and our children throughout the day.  Give me the strength, Lord, to bear the labors of these days.

I fully expected to be writing a notes post today.  I am now officially half way through my pregnancy, and feeling great.  Unfortunately, I drove to the ER with Hope this morning for seizure activity that has been developing recently.  They discovered a brain bleed; we don’t know if the two are connected, though I suspect they are.  We don’t have any answers yet, just more questions than we came in with.

Please pray for our sweet girl and for the other children, as separations due to hospitalization is stressful on everyone.  Thank you for being patient with me as my blogging has taken a backseat this week to more urgent family needs.  Thank you for walking with us and carrying us to the Lord in prayer.  We knew our children’s journeys of healing were only just beginning, and though this is a difficult time, it is one more step on Hope’s path to healing.  And we are so honored to be walking it with her.

May God richly bless your Lord’s Day tomorrow and give you the opportunity to partake with Him in the Glories of Heaven through the precious gift of His Body and Blood.  Sweet Hope and I send ya’ll much love from our little hospital room…

Heavy Heart Today

I apologize in advance.  My heart just isn’t in this post, but I have several updates to make.  My writing is just going to be to the point, so bear with me.  After I let you know what’s going on with our family I will explain why I have such a heavy heart this morning.

First thing, I’ve had some questions, so I will just reiterate my answers here in case others have also been wondering.  Someone asked if I could share pictures.  I would love to, but I don’t have a camera here.  I asked my hubby to bring ours up today so I could document some of our hospital time in pictures.  To tide you over, here is what my other two littles have been doing at home while we are stuck here:

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Someone also was wondering why the hospital is not feeding her more if she’s hungry.  The reason why we are in the hospital is to prevent re-feeding syndrome. If you feed a child, who has been in starvation mode for an extended period of time, without going slowly and taking proper precautions, their bodies will reject the food. It can be serious and deadly. 

I doubt her body is in that malnourished of a state, but they are being careful so she can stay as healthy as possible as we slowly increase her calories.  It’s tough for her and for me, but it would be tougher if we fed her too much at once and her body started rejecting it.  Only a few more days and she should be up to a healthy calorie intake for the first time in her life.

I also had a question about her bowel movement situation.  Still nothing.  She went without one for eleven days after we picked her up and she’s going on day five now.  She isn’t in pain (nor was she before for this reason, I’ll explain in a second) or any discomfort and she isn’t constipated.  The doctors and I have come to the conclusion that there simply isn’t enough food going through her system yet to prompt regular stools.  Suppositories and Miralax will do her no good, nor does she need them.  We just have to wait till her body is ready.

There are also updates from yesterday I wanted to share.  First I will talk about her discomfort after eating, as we used to think that was due to constipation, but she’s not constipated.  Yesterday morning they gave her a big helping of yogurt and oatmeal for breakfast, she’s never had those two things together before, and she was writhing in pain.  She sobbed for about fifteen minutes, and I have never seen her cry.  Crying doesn’t come easy, so I knew she was suffering.

At lunchtime, after I wrote yesterday’s post, I had a light bulb go off.  She had meat and veggies for lunch and very little discomfort afterward.  I started thinking back to all her previous meals, which ones went well  and which ones didn’t?  The day before she had also had a meat and vegetable only meal and didn’t do too badly.  All her other meals have had either fruit or yogurt or oatmeal in them…. light bulb.  Her stomach is just not handling grains, dairy or fruit right now.

In country, fruit was just about all we could get her to eat, so that and yogurt made up the bulk of her diet.  No wonder the poor thing was in pain all the time!  I talked to the dietitian and requested her meals be changed to meat and vegetables only, with the exception of the pediasure, which she seems to be doing ok with.  We will continue that at home and try to slowly add back in the other food groups as she tolerates them.

Needless to say, dinner went fabulously.  Absolutely zero pain or discomfort.  In fact she was laughing while I burped her and thought the whole experience was hilarious.  She was in the best mood I have seen her in since we took her out of the orphanage.  So thankful we’re getting our happy girl back; I had forgotten how much fun she is when she’s not constantly afraid and hurting.

So that’s all for my family’s updates.  Now, for the reason I am not doing so well, even with Hope’s improvements.

Last night I learned that a dear friend of mine lost her son in a tragic accident yesterday.  I linked to her blog a little while back and so many of you were touched by their family’s story.  Here is her blog.  Susanna has been an amazing mentor to me in the last two years.  Recalling Tommy’s adoption journey, and her transparent writing about the hardship their family faced through all of it, gave me the strength and peace to consider Hope’s adoption.

As I look at my sweet girl now, I often have thought of Tommy after he came home, and I look forward to Hope one day blossoming and growing and learning just as Tommy did.  His story gave me such peace and comfort.  I was honored and privileged to watch his life truly begin with his new, loving family, even if just through pictures.  I am heartbroken for his Mommy.  I can not imagine the pain she is going through.  I feel like a piece of my own heart has left this Earth, such a precious boy, such a precious gift to so many.  It’s an overwhelming grief, not only for his family, but for so many people who love them.

Please pray for Susanna, her husband Joe and all of their children who are grieving their brother.  Susanna still has many little ones to care for and love on during this dark valley.  Please just add them to your long term prayer list, as they desperately need all they can get, and I know I have so many amazing prayer warrior readers here who can do just that.

Rest peacefully in the arms of Jesus sweet Tommy.  I cannot wait to meet you on that Glorious Day.

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Rough Morning

I slept much better last night.  I think I got about six hours total in short little 2 hour nap increments.  I feel great compared to yesterday!  I don’t know if it’s possible to sleep any better than that in this place.  My hip is killing me though, the bed is a pull out chair, so basically a single.  And I’m sharing it with my two year old, so not a whole lot of wiggle room and I must have not been in a good position last night.

This morning, though, has been the worst so far of our stay.  I have a new nurse who hasn’t read her file yet and doesn’t know anything about her situation or history.  Haven’t had time to sit down with her and talk that out yet.  Her poke didn’t go well this morning, the lab lady came up with no hand warmer, so we had to wait for one from the nurse’s station and it didn’t get put on long enough so it took longer and she was getting pretty distressed about it.

After that it was time for breakfast.  I am so glad we are able to increase her calories today.  Nothing makes you feel like a horrible mom more than eating meals in front of your very hungry child.  At every meal she screams because it’s all gone.  Heartbreaking.  So I was glad for a bigger meal this morning, but her digestive system was not.  This is the first time I have ever seen her cry.  (It takes a lot!)  She just sobbed for fifteen minutes; I was so concerned that I asked for the doctor to come take a look.

The doctor ordered a suppository, thinking that might help move things along and ease her discomfort.  After that the nurse came in and said a routine urinalysis was ordered.  I had no idea what all involved the “bag”, but I felt like she had a rough morning and I didn’t want any more interventions than necessary.  She assured me it was quick and painless, so I went ahead.

Putting the bag on was not bad at all, but once we got the sample and she came to remove it she said “Now this is the hard part.”  I felt like punching something… not someone of course… ahem.  More crying.  It took like five minutes to get the adhesive off of her.  I was infuriated.  I never would have agreed to a non-necessary urinalysis had I known what was involved with it, and I told the nurse as much.  This girl has been through so much, the last  thing she needs is unnecessary trauma.

After I had her diaper back on and calmed her down the nurse offered to do the suppository.  Umm… no go away.  I think I said it nicer than that.  But anyway, I’m holding off on the suppository for now.  Her diaper change is the only thing she was not scared of here, and that’s just been taken away.  I mean, it doesn’t seem like a big deal.  But that seriously is a big deal.

I was thankful that they had a volunteer come up to take Stephen to the play room.  Normally I would never let a stranger watch my child, but Hope needed me and he needed out of that room.  There was about a half hour they were both just crying and it was not a good situation for anyone.  He loves the play room, and had been begging to go, so I think it’s the best I could have made out of a bad situation.  I wanted to go down and be with him now, but Hope is sleeping and I feel like it’s more important to stay with her.

The doctors ordered and EEG again for today (I had declined it the first day).  The EEG technician came up and I talked to her about Hope’s situation, since we asked for a portable EEG due to her trauma of being moved away from her bed at this point.  I thank God for that dear woman.  She asked my why they ordered an EEG and after explaining to her everything I had been told she was totally confused at why they had ordered one in the first place.

The doctors before had assured me it was non-invasive, but after explaining Hope’s situation to her, she was straightforward with me that this would definitely be an invasive procedure with her very sensitive state.  I thanked her and asked to wait on the EEG until the doctors did their rounds.  When I spoke to our senior doctor about it, it became evident that there was some misinformation about her medical history that they were going off of, so I was able to clear that up.  And they decided to have neurology come take a look at her and wait on the EEG since (as I had presumed already) there isn’t a specific reason in her medical history for her to have an EEG at this point.

That was a big victory for me this morning.  And little victory, they cancelled her second lab today, so we only have to do pokes once a day now!  Woohoo!  Hope is asleep now, and I’m praying the rest of the day goes a little smoother for her.  I think we’ll have some visitors later, so that will be a much welcomed break for me as well!

Things I’ve Learned

In the last 24 hours I have learned a lot of things.  Here are just a few of the things I learned….

10403142_691594270895165_3282434633116803121_nAbout Our Family

  • We can survive a car ride with all six of us!  At least for twenty minutes…
  • We are awesome together and it is awesome to be together.
  • We’re a normal family.  We love each other to the moon and back, theoretically of course… practically so far we just love each other to Ukraine and back but that’s besides the point.  My point is, we love each other tons, but we also scuffle and wrestle, learn and grow, and live this beautifully messy and chaotic life that only a family could step away from and realize they never want to leave it again.
  • Sometimes it’s ok to bribe the two year old with Skittles at 7:00am in the morning.  Not saying that happened, just saying that apparently there are situations where that is totally acceptable.
  • We have the best husband and father in the world.  We are so blessed to have him.

About the Rest of the Week

  • We are going to be here a while…
  • The Ronald McDonald House will hopefully have room for us on Friday.
  • Daddy, Evangeline and Jacob just left.  They will stay at home for one or two nights so Daddy can get a little work done and we can save on hotels.  Feeling quite alone tonight.
  • My Daddy is taking a long weekend to come help out at the hospital!  So excited for him to meet his new grandkids and to have the extra hands.
  • It’s going to be long and hard, but in a good and necessary way.  This is the road to healing, and we’re glad to finally be on it.

About Nurses

  • The nurses at our children’s hospital are amazing.
  • EKG nurses do not like being asked to wait until morning to run their tests.
  • There are a lot of pregnant ladies here and they look super cute in scrubs.
  • Just because they say something has to be a certain way doesn’t mean you can’t ask so many questions that they finally give up and consult the doctor about it to get away from you.

About Jacob

  • We were very hopeful that he would be able to get a walker right away to get him off the ground, but the OT didn’t think that would be realistic.  His feet are profoundly contracted and will need some time to get to a neutral enough position where standing properly is possible.
  • He needs an MRI just to check everything out and some x-rays and blood work, but other than that he should be fine until we can get him therapy at home.
  • He is super happy to have his Daddy back.  And that doesn’t even begin to describe it.
  • He has a real sense of humor.  We were able to have a translator with the doctor and he was telling jokes all during the visit and loved conversing and interacting.
  • He’s compassionate.  He asked the translator several times why Zhanna was sick, was she going to be ok, etc.  He was obviously concerned and we were able to comfort him, but how sweet to see he cares so much about his little big sister.
  • He kept telling us all throughout the doctor’s visit “I’m not scared.  I’m not scared of anything.”  Our brave boy, denied a real childhood all these years.  So excited to introduce him to the experience of being carefree.

About Hope

  • She is a warrior princess.  I am totally in awe of her ability to endure grueling, painful and terrifying circumstances for days on end with so little resistance and so much joy.  How much she’s teaching me.
  • She will need to be in the hospital for at least a week in order to get her nutritionally stable.  We were hopeful for a much shorter time frame, but God’s hand has been so near to us here it has actually been spiritually replenishing for me to just totally rest in His arms through this.
  • She tolerates her IV so well!  She hardly touches it and hasn’t tried to rip it out once, even though it is preventing her from propping herself up or laying in her favorite position.  So proud of my girl!
  • She is quite anemic, which you can totally guess just by looking at her, but strangely enough her iron levels aren’t that bad.  They’re running some more labs to figure out exactly what time of anemia it is so we can work on getting her the supplements she needs.
  • This girl is going to learn to walk!  The physical therapist believes there is no reason she cannot learn to walk with a walker as her strength increases.  Her bone density looks good and she will be able to bear weight when she’s ready.  In fact, she highly recommends we get her a stander right away so she can start getting used to being in an upright position!  How exciting!
  • And I knew this already, but the nurses are confirming it again.  She has a beautiful spirit and a delightful smile.  She is charming the socks off of everybody… except for the x-ray technicians… and the people with the pokes… She doesn’t seem to care for them much.  Not sure why.  😉

Until tomorrow friends!

It is Finished.

They are home.  We are a family of six and it feels amazing to be together (well in the same city at least) again.  Stephen and I are hanging out with Zhanna at the hospital.  Be in prayer for her, this is tough!!  Daddy, Jacob and Evangeline are at the hotel to get a good night’s sleep.  Daddy sure did earn it!  Will update more tomorrow. Thank you all so much for everything.  Truly.  We love you guys.

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