Difficult times

The past couple of months have been very difficult to say the least.

First we found out about Harli's heart/lungs in May.  That news has been paralyzing at times.  It's overwhelming to see your child who looks healthy and be told that eventually she will develop symptoms that will only leave us with the option for a heart/lung transplant.  The magnitude of being told this is almost unbearable.  At times there's only tears and it feels like you can't breathe.

Our biggest hope is, of course, that God will heal her.  She is on medication and we are hopeful that it will bring the pressure down in her lungs enough that she can have open heart surgery to close the ASD & VSD. However, this is a gray area.  Not all specialists even agree that we should try this treatment (and we're consulting the top Dr's across the US).  Some argue that unless it totally reverses the Pulmonary Hypertension (which isn't likely to happen) that we shouldn't do anything.  Even if we can get her to a point where she can have the open heart surgery, there are definitely risks. Her lungs could rebound and cause her to be worse than if we did nothing.  But, as her parents we can't sit here and do nothing.  We have to choose the path that might offer hope instead of a certain destiny.

She has been on a small dose of medication since May and is reacting a little already.  We plan to be more aggressive with medication, however in June she had a seizure which has held up our plans.  The Dr. thinks she has a form of Epilepsy that she would outgrow during her teenage years, but isn't 100% so more testing is needed. Since June we have been trying to schedule a sedated MRI & overnight EEG for two months to hopefully get some answers.  This is quite a process for a child with a serious lung issue.  The local Anesthesiologists won't even consider sedating her.  She will have to have a special Cardiac Anesthesiology team.  She had some oxygen issues after her cath procedure that scared everyone pretty badly so we actually feel better knowing she will be in a hospital that is more equip to handle her medical conditions.  She also needs some additional dental work, after the extensive dental surgery she had last December, before we can move forward with her plan for possible heart/lung treatment.  We are working on this as well.

It's been months of going around and around with several Dr.'s, Nurses, Dentists, etc.  It's exhausting.  And, I know this is only the start.  We will be traveling out of state to meet with many Dr.'s in the near future and the medical bills are already coming in like crazy.  Thank goodness she is still her happy, silly self!

Our other children have also been greatly impacted by the events over the past few months.  We are trying to move on as normal, but it's taking a toll.  We will continue to let our faith override our fear and always choose hope, but honestly it's been stressful for all of us.  We have lost a big support group through church and that has really hard.  We are so grateful to our friends that are sticking by us through this, we couldn't do it without you.

If we ever needed prayer, we need it now.  We are under so many attacks.  Please pray that we select the best Dr.'s and treatment plan to care for Harli as we move forward.  Pray that God's will is for her to be healed. The Dr.'s are going to make us decide which medications we want to try and how hard to push.  It's terrifying to have to make these kind of choices.  So much about her condition is unknown and there's no clear answers as to what will be best for her life in the long run.  There's no studies to prove that surgery is the best option.  But, as I mentioned before we have to try something that might offer hope.  We didn't adopt her to give her a life where we just wait for symptoms to appear and get bad enough for a double transplant. We adopted her to see her life full of promise and hope!

On the adoption front, we are now DTC (Dossier to China) which means in about four months we hope to bring Mia home forever!  With all of Harli's medical we decided that we needed to know more about Mia's medical.  We had requested a new MRI before taking her referral, but weren't granted one.  We decided to push for a new MRI again since Mia's was so old and actually received one this time.  However, we are having trouble getting Dr's to review the info and based on the report a few have mentioned that she could have a very serious, debilitating condition - that is not even close to the need she was listed with.  A condition that would be very difficult to manage...especially on top of Harli's medical.  Harli is very excited and asks about her mei mei daily and it's heartbreaking to hear that Mia's medical could be so bad.  We have decided to pay for a more formal review of her medical and we are awaiting their response.  We're praying that the Dr's will review the images we have and hope to get anything else they request so that we can get a true medical opinion.  A few Dr's have told us there's not enough info so we may need to request more before actually getting a solid idea of what's going on.  Please pray with us that she doesn't have this progressive diagnosis, we very much want to bring her home to our family and we are just heartbroken over this possible news.  We have to try to think positive and move forward.

Our fundraising has slowed way down as it's been so challenging to try to keep up with all the medical calls and appointments while fundraising.  We are trying to plan some more things and our Yankee Candle Fall Fundraiser is ready to go...if anyone is willing to sell for us - we would be so grateful!  We are setting up a Facebook page dedicated to bringing Mia home, I will share the FB page soon.  I think a friend is setting up a Caring Bridge page for those that want to follow Harli's medical.  I will use the FB page for our online auction also which is coming up soon!   I've added a PayPal donate button to this site if you feel inclined to make a donation towards our adoption and/or medical travel expenses.  Our insurance will not be covering any of the travel for Harli to see specialists out of state.  None of the local Dr's have experience with her heart/lung diagnosis so to optimize her future we must travel.  Please feel free to share both our blog and Facebook page with your family & friends if you feel led to help us!  Your prayers and support are very much appreciated.

Standing still

I just haven't had words for what we've learned before, during & after Harli's heart cath.  I'm still not sure I have exactly the best words for this, but here we go...

I'm going to sum up what we learned at a high level.  If you have followed our journey, you will know this is a different medical story than what we thought.  It's complicated and I'm not going to get into the details. Please do not comment on this contradiction; please just support us with prayer and encouragement as we move forward.

We went to the Children's Hospital for her heart cath on May 8th.  During pre-cath testing, her echo showed that both holes in her heart are in fact still completely open.  The ASD was obviously open, per my last post and that's the reason we were doing the cath; to close the ASD.  What we learned in addition that the VSD was still open and large in size.  Upon the advise of the Dr.'s we moved forward with the cath to determine pressures in her heart & lungs.  Normally a VSD of her size would have been closed at about 6 months of age in the US to avoid the child from developing Pulmonary Hypertension (high pressure in the lungs).  Unfortunately, Harli's heart was not repaired & is still not repaired - she is not eligible for the open heart surgery to repair her heart at this time due to the Pulmonary Hypertension she has developed due to the VSD not being closed.  I'm not going to go into exactly what we've been told, but at first some of what we were told wasn't so uplifting or optimistic.  This is hard to hear, especially hard to wrap your head around since she doesn't have any symptoms currently.  Thankfully, we have been in touch with Dr's, and other families, that are much more familiar and it seems that there will be more options than we initially thought.

For those of you that would like to be educated on her medical condition, you can read here about VSD here about ASD and here about Pulmonary Hypertension

What do we do next...

#1 - PRAY, please pray with us that God heals her heart & lungs
#2 - WAIT, to hear from all the Dr's in various states that are reviewing her file right now
#3 - BE STILL, prayerfully & diligently determine a course of treatment with her Dr's that will give her the healthiest, longest life
#4 - HOPE, do not lose hope that she WILL become a candidate for the surgery that could make a huge difference in her life
#5 - PRAY MORE, pray that our family can see God's grace in this journey and that our hearts are prepared for the unknown as we may have to travel out of state several times to figure out the best care for her

Our Super Girl; indeed

Now that I have addressed Harli's medical, I'm going to answer the #2 question. Are we still going to adopt Mia?  The answer is YES.  Honestly, we did take a small step back to make sure we were on the same page.  But, we quickly realized that this is His plan for us and we will lay this at His feet.  Harli is over the moon excited to become a big sister and Mia still needs her family.  He is ALWAYS in the details.  While we were at the hospital, we learned that our Home Study had been approved.  We were expecting some questions or delays since we have a big family, we were also expecting this to take at least 3 weeks.  However, no questions, no nothing - approval in 10 days...super fast, such a blessing.  We are continuing to work as fast as we can to bring Mia home!  Here are some updated pictures of her!

The #3 thing I want to talk about is our faith in this situation.  Our faith has not changed, this one moment doesn't define or change our faith.  Sure, we thought prayer worked and a miracle was performed...that Harli's heart healed on it's own (or that her medical was off). BUT, just because that isn't what happened doesn't mean that we don't believe God heard us or that He doesn't want her healed.  Maybe we weren't supposed to find out until now, maybe the miracle is yet to come!!  He has a plan for her and a testimony that has only just begun.

1 John 5:14

This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us.

We don't know the plan for any of our lives; only He does.  As it goes...God is good all the time, all the time God is good.  No matter what the plan is for each of us, He is in control and He is always good.  None of this is a surprise to Him.  We know that He will make our paths straight.  None of us are promised a certain number of days here on earth, not even tomorrow.  BUT, we are promised tomorrow in Heaven if not here on earth!  That is the grace and hope that moves us forward during any difficult situation.

During the last few weeks with Harli's medical, I've thought a lot about a couple in our church that lost their child at a young age.  An age the the Dr. said Harli would probably only live to had she not been adopted or without treatment.  I can't imagine their pain.  Their faith has been so incredible and I doubt they even know the example they have provided to their church family as we watched from afar.  I had to comment on our faith during this journey because we have already had people mock or question prayer and our faith a little. I don't really mind this because it allows us a platform to say...yes, this is horrible but we still stand strong in what we believe.  This doesn't make us question our faith; it really only makes us pull closer to Him.  We haven't lost hope in a miracle, hope in total healing for our sweet little girl.  It's been an emotional month, exhausting month, an emotionally-exhausting month.  It feels like our world is standing still when really everything is spinning around us and we're trying to keep up.  Life keeps moving forward, but it feels like in some ways we are trapped in the same spot.  The only thing we can do is put Jesus at the center and set our eyes on Him.  I can only wonder how this may be a similar feeling on a very, very small level to what this family must have felt/may still be feeling.  I am so grateful for their painfully beautiful example of faith.  It may seem strange, but I've thought about them several times and it reminds me that no matter how bad things are or seem - hope is always found in Jesus! 

The #4 thing, while I'm on a roll is regarding loving an adopted child as "your own" (biological child).  YES, YES, YES you can love an adopted child just as if they were your biological child.  I know people wonder this as they adopt or as they choose not to adopt.  I'm not here to say if adoption is right or wrong for your family, only you can decide that.  But, I can tell you that adoption is not a second best choice and you absolutely can love an adopted child every bit as much as a biological child.  Going through this just proved this to us all over again.  It's amazing how you can feel that bond; it truly feels like she was perfectly selected for our family - oh wait....she was!  ; )

I made this blog so that people could follow our adoption process.  I also wanted people on the fence about adoption to have a real picture of it (even though there's so much more I could share).  I have to say that I do feel badly that there are so many amazing things about our other children that I don't share because we don't have a family blog.  So, just so you know, each one of our other children are wonderful as well and we are so proud of each one of them!  A family blog may be in order soon!  

He ALWAYS makes all things work together for my good

First of all, I've learned I'm a terrible blogger!  It's been forever since I've even posted in here!!

Harli is doing great!  She is talking more and more everyday.  It's been a long road to being able to actually have a conversation with her, but we are starting to really turn a corner.  She is now five and will be headed to Kindergarten in the Fall.  It's so awesome to hear her putting words together to make small sentences. She is such a smart cookie! She had Dental surgery last December which included 8 crowns, several fillings and it eventually leaded to her two front teeth being extracted in February.  After the Dental surgery she really took off talking and we can only imagine how much those teeth had been bothering her.  She is such a happy girl!  She is full of sass (a real Chinese "spicy girl" for sure) and loves to sing.

We have continued her appointments with her Cardiologist.  The VSD we were watching continues to close.  During our most recent visit, the Dr. repeated the echocardiogram - her last one was over a year ago.  She feel alseep for the first time during this echo, due to that she was perfectly still and the Dr. was able to see a much clearer view of her heart.  He was able to confirm that her ASD, that we thought had closed because it didn't appear on prior echo's, was still there.  Due to her age, she will need to have a Cath procedure to close that hole.  We are hoping and praying that this will be all she needs.  However, there is a small chance that the VSD is still open and that she will need open heart surgery after all because the VSD is right next to the valve.  We will schedule her Cath sometime soon, within the next few months.  This was really a lot to take in at this visit as everything had been so positive with prior visits.  We took this news pretty hard at first.  We were prepared originally for her to have open heart surgery but, it was hard to hear that news after things seemed to be so amazingly well for so long.

Also, we had news that many people didn't/still don't know....

In January, we were not in process to adopt, but we found ourselves reviewing the file of a little girl.  It all came about quickly and we felt compelled to ask Dr.'s to review her file, but we weren't sure about her Special Needs as we weren't familiar with them.  After consulting Dr. after Dr. - I think 7, we felt confident that we could manage those needs.  We kept expecting doors to close.  After the medical, we started questioning how we would afford it, we are still paying the remaining balance of Harli's adoption & Dental expenses.  Even though we were open to adopting again, the reality of actually being faced with doing it was a little intimidating.  Not that we weren't going to remain open to it, but all the stress of the process and what others would think came flooding into our minds. However, every reason we came up with to not adopt her sounded so selfish.  The Holy Spirit has guided us before and we recognized that still, small voice.  Both of us prayed and prayed for God's will, for Him to lead us.  Doors kept opening; we were presented a way to pay for our Home Study out of the blue.  At that point we both knew that she was supposed to be our daughter.

Our study at church with our Small Group during this time and the messages during service were about taking up your cross to follow Him.  For us we felt like this is was our cross.  We knew what we needed to do deep down.  We knew we would be criticized for this choice and that people would challenge our decision and some have already.  We know there are people reading this and shaking their heads and thinking "what are they thinking".  What we are thinking is that God has called us to do this and we will honor Him at all costs.  We will not be ashamed when people ask us if we are crazy, we will not be made to feel like we're doing something wrong.  Ultimately we had to make the choice; will we please God or will we please others.  That's the bottom line; that's how we made our decision.  (and....just a side note that we will be fundraising like crazy so if you don't want to see it then please un-friend us now!!)

I must also say that we have also had so many people show us support and love as we've started to share this news.  To be able to share this with people who haven't judged us has been so amazing.  Some of these people I didn't expect a positive response from and I'm overwhelmed with the wonderful family and friends we have surrounding us!

So, having said all of that....we are overjoyed to introduce our daughter to you!!  She will be 2 in June and we cannot wait until we are all one, big happy family...together.

My post title is He ALWAYS makes all things work together for my good.  It's true.  Even though Harli's heart hasn't healed  itself like we thought, we know God's timing is perfect and this was reviled to us at just the right time.  Had we known this about her heart, we probably would not be adopting right now.  Even if she had surgery upon returning home, we probably wouldn't have adopted again.  Her VSD is hopefully closed and if it is then she will only need a Cath vs open heart.  There are always reasons to praise Him.  He is always in charge and aligning our lives according to His plan.  Sometimes, it's so difficult to understand, but we will remain steadfast in His goodness and faithfulness.

If you would please...pray for Harli over the next several weeks as we schedule her appointments and eventually travel to the Children's hospital where she will have the Cath.  Please pray for our adoption process. Please pray for our other children as we experience all of this as a family; that it will only draw us closer to each other and strengthen our faith.