Baby Check Up!

Jacques and I spent all day yesterday at the Children's National Medical Center having the baby checked out.  Jacques was very excited to be allowed to try his hand at the ultrasound machine, and he was even able to get some images that the technician was not able to capture! We are 28 weeks 3 days (today), and the baby is measuring at 26 weeks.  The small size is very typical of baby's with Downs Syndrome, but the doctor was pleased that the baby is still within a "normal" growth curve.  We also learned that there is a lot of extra fluid around the baby.  Once again this is very typical of pregnancies involving a baby with DS since they do not swallow the fluid as well as other infants.  The doctor said that this would explain my extreme discomfort, and constant tightness in my stomach.  It is also the cause of pre-term delivery, so they will be keeping a close eye on the fluid levels over the next few weeks.

Next, we had a very encouraging meeting with the Director of the Down's Syndrome Clinic.  We were told that this man was amazing, and with his 42 years of experience we feel confident that we are in very good and capable hands.  Our family will be working very closely with this Clinic in order to maximize our child's potential. 

Lastly, the baby had a fetal echocardiogram.  The Cardiologist said that they got a lot more information and beautiful images since the baby was 4 weeks bigger.  Our little one has an atrioventricular septal defect, which means that there's a hole between the chambers of the heart and problems with the valves that regulate blood flow to the heart.  The baby only has one valve, and is actually completely missing the other one.  The Cardiologist will be keeping a close eye on the one valve that the baby does have, since there is a chance that it could begin leaking.  As long as this valve does not begin leaking, the baby will be allowed to go home from the hospital with us after s/he is born.  We will use a lot of different medications to keep the baby alive for its first few months of life since it will be in heart failure.  The baby will dictate the timing of the open heart surgery, but the cardiologist is hopeful that the baby can wait until s/he is at least 2-3 months old.  Lily's surgeon, Dr. Jonas, will perform the open heart surgery.

Jacques and I enjoyed our almost childless day together, and laughed so hard we cried on several different occasions.  Jacques and I make an amazing team, and there is NOTHING in this world that we cannot tackle together with the help of our Lord and Savior Jesus Christ.  Just ask us!

Cardiology Follow-up

Did you hear Jacques and I screaming

from the rooftops this afternoon?

Lily had a 3 hour Cardiology follow-up appointment today.

She was all smiles when we walked into the office.

However, as soon as they asked her to put on a gown,

my sweet girl freaked out and said,

"Mommy, we gotta get outta here!!!  I need to go home!"

My heart literally twisted in my chest.
No child should ever experience this fear.

After a lot of convincing that we WOULD go home,
Lily finally calmed down.

This is Lily's "you better not keep me here" face...

Here is what the doctor told us:

Her lungs sound CLEAR...
(we left before they read the chest x-ray though)

Her heart still has a little fluid around it...

Her heart function is decent...

Today we discussed some midway and long-term plans for Lily, which as you can imagine is extremely overwhelming.  Jacques and I have A LOT to consider.  However, the goal for right now is to keep her HOME, help her pack on the lbs., and give her body a chance to recover its immune system.  Our family is living for the moment, and enjoying every beautiful second of it!!!

God is the strength of my heart...Psalm 73:26

Naughty Mack

For those of you who only know Mackenzie through this blog or Facebook, you may find it hard to believe that despite her sweet and innocent looking face, Mackenzie can be quite Naughty!  For those of you who truly "know" Mighty Mack, right now you are vehemently shaking your head in agreement with me.

After being confined to a metal crib in her orphanage for the first three years and two months of her life, most of Mackenzie's naughty behavior stems from the desire to explore EVERYTHING and ANYTHING all at the same time.  Very early on, Jacques and I learned that in order to keep Mackenzie and the rest of us safe, we would need to figure out a way to slow her down and put her in a timeout that was within our line of sight.  So, when Mackenzie gets out of control, we tell her to sit down and put her hands on her legs.  Perhaps this sounds silly to you, but it works really well for our Mighty Mack.

Yesterday, Mackenzie was being really naughty.  Jacques headed down to our basement to run 5 miles on the treadmill.  He knew he could allow the other three girls to play upstairs in the toy room while he was running, but Mackenzie could not be left unattended.  Jacques put Mackenzie in front of the treadmill where he could see her, and told her to sit still with her hands on her legs.

Within only a few minutes this is what he saw...

Mackenzie fell asleep.
Many times, her head would nod to the side,
and she would lose her balance
nearly falling over.

 

And then she did fall over,

while staying asleep...

with her hands still on her little legs.

What a precious little pumpkin!

I have to agree with you Mackenzie,

running sure is boring!

Happy Valentines Day!

 

 

Nurses - God's Gift to Families!

To say that we LOVED our nurses, would be a terrible understatement. 

Pigtails and bows for a smile!

A Sharpie marker tattoo, to stop the tears after a shot...

Special trips down to the Christmas tree...

Gummy Bears after a chest tube readjustment...

Grown men wearing taped on bows...

LilySTRONG!

So much love and support...

And many more who I did not get to photograph!!!!

Thank you CNMC Nurses...

we truly do love all of you, and miss you too!

"In everything I showed you that by working hard in this manner 

you must help the weak and remember the words of the Lord Jesus, 

that He Himself said, 'It is more blessed to give than to receive.'"

Acts 20:35 

There's No Place Like Home!

H...O...M...E...!!!

It is with a heart bursting with excitement that I get to tell you - 

Lily is getting "OUTTA HERE" tomorrow!!! 

Our morning started out with the nurse practitioner coming to tell us that during rounds this morning, the surgeons decided that Lily was ready to go home.  She is still not eating very well, and her weight is only 26 lbs...exactly what she weighed when we brought her home from China eight months ago.  The only difference is that she has grown 8 inches since then!  Dr. Jonas believes that once she gets home, Lily will eat.  We will hope and pray she does because if she continues to lose weight, Lily will need to come back to the hospital to have a G-tube placed into her stomach.  But we won't need that, right?

Lily without her ng tube!

 

What the surgeon came in to tell me later this morning is nothing short of miraculous!  Lily had an echocardiogram yesterday, and she still has fluid around her heart, as well as some fluid in her left lung.  The 6 mm blood clot is still lodged in her fenestration, which is where we would like it to stay since the alternative is not so good.  The surgeons said it was impossible, but Lily's fenestration is shunting a small amount of blood.  This is the reason why her pleural effusions have gone away, for the most part, and she has been able to keep those chest tubes removed.  

I love when God allows the impossible to happen!  

Some more amazing and shocking news was that Lily's Coumadin levels became therapeutic in only a few of days.  They decided to take her off of the Lovenox injections to thin her blood because even with the large quantity they were giving her, Lily's levels never became therapeutic.  Since Lily's clotting disorder is so severe, the hematologists thought it would take somewhere between 10-14 days for her Coumadin level to be within range.  We accepted the fact that we would be here at least another two weeks.  Imagine my shock when Lily was within range in only three days!!!

Lily will be closely monitored by the hematologist and cardiologist for the next several months.  Lily will need weekly blood draws in order to make sure her Coumadin levels stay therapeutic.  This might be a challenge at first as she eats better, and gains weight.  We will also be monitoring her oxygen saturation since she runs the risk that her fenestration might stop shunting blood, therefore causing her lungs to fill with fluid again.  Jacques and I have a lot of decisions to make about how to proceed from here.  Lily will eventually need more open heart surgeries, and possibly even a heart transplant.  We have a long road ahead of us, with a lot of difficult decisions to make.  

But tomorrow...we will go home.  

And we will enjoy being a family of 6 again. 

Praise God from whom all blessings flow!

Ready or not...here I come!

Sometimes gifts don't always come to you in the way you expect them.  As most of you know, our family has been on a journey this past year in which we have experienced some incredible highs and some scary lows. God's Holy Spirit, your prayers, the love and generosity of our friends and family (some who are scattered across the world that we have never even met yet) have given us the strength to face challenges we never imagined we could survive (my 10th grade English teacher would have made me change that sentence for being too long!). Thank you from the bottom of our hearts for your love and support. However, we recently learned of a new challenge we are bracing to face.

 

Because of Emily's high blood pressure, Carcinoid tumors, and her being pregnant in her 30's (and yes, she is much younger than me - and way hotter too), her pregnancy is deemed "high risk". That is code for plenty of ultrasounds, which increases the likelihood that some medical professional will ruin the surprise and accidentally tell us the gender of our unborn baby. Grrrrrrr.

 

During one of those ultrasounds, a doctor noticed some small indicators that lead him to suggest we take a simple blood test to rule out or confirm his suspicions. We took his advice. We waited not so patiently, and a week later, we received a phone call. Our baby has down syndrome. 

 

It is my guess that no couple on the planet can ever be prepared to hear those words. Maybe the fact that we had two perfectly healthy babies prior lured us into assuming everything would go as planned with this birth.  But like I said earlier, not all gifts come to you the way you expect them.

 

Surprise #2! We decided (since Emily practically lives there for now) to transfer our care to Children's Hospital in D.C. We love their doctors & nurses, and the care is wonderful. They preformed yet another ultrasound, and as well, just to be safe, an echocardiogram.  It was an emotional day to begin with. The rare days Emily and I get spend together are precious. We were (and are) still wrestling through how this new challenge will impact our family. We are hanging on by a thread to the hope and prayers that God will preform a huge miracle in our little Lily.  At the end of the day, we sat across the table from a Cardiologist, holding each others hand, only to hear what no expecting parents would ever want to hear - that our unborn baby also has a serious congenital heart defect that will require surgery.  My wife can fill you in on the details in a later posting - she is much better at explaining medical stuff than me!

 

As you can imagine, this is a lot to handle - on many levels.  As a husband, I have watched Emily show more love and give more strength to our Lily - making incredible sacrifices to get her the care she needs to give her a chance to live.  I wonder how much more one mom has left to give.  She is an incredible woman.  I have watched our girls - all four of them - endure having their worlds as they know it turned upside-down.  It amazes me how well they are doing.  I wonder how much more change they can handle.  For the time being our plan is to wait until the baby is born to explain the complications.  I'm sure when the time is right to talk to our girls, we will know it.  For that reason, we are asking any of you who are around our children to guard your conversation so they can enjoy this pregnancy and delivery without the added stress of trying to make sense of something their young minds cannot understand.  Since their only frame of reference for heart complications is Lily, we would like them to experience the arrival of their sibling without fear.

 

I told some of my family when I shared the news with them, that God must see something in me I don't see in myself.  If that' s the case, than He will provide emotionally, physically,  relationally, and spiritually everything we need to face this - and face it we will, both willing, and in his strength, able.

 

James 1:17 says, "Every good and perfect gift is from above".  Our soon to be born baby is exactly that; a good and perfect gift from above - God's incredibly beautiful gift - to us. For not all gifts come to us exactly like we expect.  And although we definitely didn't expect this, we accept this gift with arms wide open.  Because Emily's belly reminds us everyday, "ready or not, here I come!"

 

Peace and Goodwill,

Jacques