Update

This past week brought some welcomed changes on the medical front. I was able to talk to Natalia's cardiologist and gain some answers to our concerns and questions.

The tiredness should NOT have been chronic, and the doctor agreed that we should take Natalia off of the medication immediately. I also asked her to rate the severity of the leakage, for both last year and this year. With 1 being very minor and a 10 very serious, Natalia was between 1-2 last year. This year, a 3. (I immediately began kicking myself for not calling sooner.)

We value and recognize the importance of medicine and certainly do not shun it, but it is not the first thing we run to, or always the best solution. We try to look at our health in a holistic fashion, appreciating that God has designed our bodies to heal itself much of the time if we are caring for it appropriately, but we also know that our daughter wouldn't be alive today but for the grace of God and the advances made in modern medicine.

It's been a discerning process to know how aggressive we should be regarding Natalia's heart, and we appreciate all of you who have been praying for us. The last two weeks have not felt as emotionally heavy, we've gained clarity to know what questions to ask, and we are seeing God's hand of provision in a multitude of ways.

Through a series of circumstances, she will be seeing a different cardiologist from now on--the one that was our first choice when we moved to PA four years ago in fact. Also, despite my delay in calling the doctor and possibly saving us from a few weeks of all of this, God has been softening my heart and giving me greater patience in the way that I relate to my daughter. For that I am very thankful. (How comforting it is to know that God is sovereign and can use our weaknesses and mistakes for His ultimate good.)

We've noticed an immediate improvement in Natalia's energy level and mood in the last few days. She is once again greeting the dawn in her usual cheerful fashion instead of obstinately burrowing under the covers. She hasn't been as spacey at preschool, and our afternoons at home have been much more pleasant. There are some residual behavorial issues to address, but we expected that.

Thank you again for your prayers for Natalia and for us!

Natalia

Early in March, I took Natalia to her annual cardiologist appointment. She did pretty well through the 2 hour visit (EKG, echocardiogram, etc.) and there has always been some leakage from the sites where the two main arteries of her heart were reattached after her arterial switch surgery at 6 days old. And every year when we go for her check-up, the leakage has been about the same.

This year her test results showed more leakage/spurting, caused by slightly tightening arteries, putting strain on those old incision sites. They wanted to put her on blood pressure medication to help the arteries relax. (We have not had any restrictions or medication for her since she came home from the hospital at 3 weeks old--just routine checkups.)

Listed side effects from the medication are mainly tiredness and sore throat, both of which we noticed right away. I guess we just expected the tiredness to be at the beginning...not chronic.

We didn't foresee...the bear. The shortened fuse. Scratch that--the non-existant fuse.

She's a determined and vocal little gal, and has never been shy when expressing herself, the good, the bad, and the ugly. But what I've been struggling with, (since I'm the one at home doing the bulk of the disciplining), is how do I allow for real chemical imbalances, yet viligantly shepherd her heart?

I know I am more prone to put my inner sinner on full display when I am physically feeling low. Especially when it is for days on end. Especially with my closest family members.

This little one has been chronically tired for nearly 2 months, no matter how diligently we get her to bed early. She's been a different girl since we started the medication. Very different.

If this new medication is inducing these changes in her behavior, (the frequent explosions of anger, the rebellion and ignoring correction, the regressing on the potty front--though it seems only at home) then how best do I (we) respond?

We do not believe her behavior is caused by the medication alone--but think it is definately heightening her responses. Increasing them to the tenth degree.

I've been crying out to the Lord for wisdom. To know what questions to ask and how best to navigate the confusing and overwhelming medical scene. (We're dealing with her vital organ, afterall.) For God to quiet our daughter with His peace, and give us wisdom how to discipline her. For Him to instruct my heart as I've grown weary at times, feeling like I'm continually walking through a minefield. And to keep my attitude soft and compassionate towards her, not frustrated or angry because of yet another meltdown over something I deem insignificant.

I suspect that for Natalia, life probably feels out of control. She's trying to keep it together all day long, and then the littlest thing feels like too much. Pray that I openly model dependance on the Lord to her. Pray for healing.

She is our gift, our miracle baby. God has a future and a purpose for her life, and He can be trusted at all times.

Our Ebenezer

Some of you were asking me recently, what type of heart defect Natalia had when she was born. I was looking back through my blog posts and realized I had never really explained it. I also thought I'd include "our story" in this post as a way of recording it for the future.


Here is a simple explanation from the American Heart Association website for D-Transposition of the Great Arteries/Vessels. (If you are interested in learning about other congenital heart defects, their website is very helpful in putting things in layman's terms.)
*Italics are mine.


TGV--What is it?


A heart in which the two main arteries carrying blood away from the heart are reversed. (Instead of crossing, they run parallel.)


A normal blood pattern carries blood in a cycle: body-heart-lungs-heart-body.


When a d-transposition occurs, the blood pathway is impaired because the two arteries are connecting to the wrong chambers in the heart.


This means that the blood flow cycle is stuck in either:
body–heart –body (without being routed to the lungs for oxygen) or
lungs–heart–lungs (without delivering oxygen to the body)
This results in blue baby symptoms, and is rapidly fatal unless intervention occurs.

Without surgery, the only way to survive this condition temporarily is to have leakages that allow some oxygen-rich blood to cross into the oxygen-poor blood for delivery to the body. A hospital facility can also catheterize a patient until corrective surgery can be performed.


~~~~~~~~~~~~~~~

Our story:
I was just thinking the other morning about the day I gave birth to Natalia.


I had had a normal pregnancy (4 months of 24-hour nausea, but normal). I had no health issues, no heart disease in our immediate family history, and normal ultrasound results. Natalia's condition was completely unexpected.


I remember the joy of hearing "it's a girl!", having her placed on my belly and Pete cutting the cord. Through the blur of tears I told him, "You were right! We have a girl!"


My doctor, who had been such a calm presence during the delivery, simply said to the nurses standing by to "have a closer look" at her, that he was concerned about her color. Pete was more aware of what was going on than I, and noticed that very quickly more nurses showed up and things appeared urgent. The doctor then told us that they were going to take Natalia down the hall and he'd return in a few minutes to let us know how she was doing.


We were in shock. We honestly were protected by it. Had we known the full scope of what was happening, oh my...


When the doctor returned he gently told us of her heart defect. (The man had incredible bedside manner!) He said they were doing all they could to stabilize her and he'd let us know more when he could.


As Pete began making calls to our family, church and close friends, reality began to sink in just a bit. We knew very little, yet even what we knew seemed so daunting. But from the very first moments, God's unexplainable, unsurpassable peace flooded our hearts. We sensed acutely the many prayers being uttered on our behalf. (Even on this day, as I write these words, my eyes well up with thankfulness. Thankfulness for the believers that surrounded us. People we didn't even know.)


We would get to touch her hand through the hole in the side of her transport cart before they took her to the University of Maryland Medical Center, which was an hour south of where we lived. It would be 4 days later, on my 29th birthday, that I would get to hold her for the first time. The best birthday gift I've ever received!


Natalia would spend the first 5 days in the Neonatal Intensive Care Unit. Weighing 8 lbs., 8 1/2 oz., she was obviously a cardio baby at first glance to anyone who walked in those doors. Those extra pounds and being full-term certainly helped in the days ahead. Would you believe that even after her 10-hour surgery on day 6, she never dropped below 7 lbs.?!


At birth, the size of a human heart is about the dimensions of an unshelled walnut. They would switch her two main arteries to the currect position. The whole thing is just so hard for me to fathom!


The day of her surgery was agony. My parents had come down to be with us and we found a waiting "room" that was really a courtyard with lots of plants and running water. A very peaceful setting with cushioned benches. We were in such a blur though, my memory is fuzzy. I do remember being unable to make even the smallest decision, like what I wanted for lunch. My uterus was shrinking and I was doubled over for awhile. I also was pumping regularly so Natalia could continue having my milk with the extra calorie formula they were adding. I'm glad we weren't alone, and that Pete wasn't carrying everything on his shoulders.



We saw her briefly post-surgery. I remember someone warning me about all the wires, tubes, and equipment, but I'll never forget her palor. I had never seen anyone so incredibly white like that before. That rattled me more than anything else that day.


Once she gained her strength enough to feed regularly, she came home at 3 weeks of age on Tuesday, January 17th. I'm not medically knowledgeable, but a mere 2 weeks for an infant to recover from open heart surgery seems pretty miraculous to me.

Looking back, we can see God's fingerprints all over this story. For one thing, the doctor who delivered her had not seen this particular heart defect in 16 years of practice. Two weeks prior to Natalia's birth, he delivered a little boy with the exact same thing!


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Today, 5 years later, as I was traveling the highway on the way to the grocery store, I passed a medical transport truck for the Penn State Children's Hospital. (That's who we see for her yearly checkups now.) I smiled and thought, maybe they're helping a cardiac patient today. :o)


We are so aware of God's kindness and mercy when we look at our daughter.


We certainly went through the emotions that accompanies trauma, but God protected us from fear. How? I have no idea other than by the power of prayer. God's peace overwhelmed us.


Today, when I look at Natalia's scar, I am reminded of God's faithfulness to us in that dark valley. It has lengthened to about 6" as she's grown, but it has faded in color.



I am thankful for it. And, I hope Natalia learns to think of it as her "Ebenezer", as Samuel called the stone he placed at the spot of Israel's re-dedication.

A reminder of God's mercy and restoration.

See Ya In A Year...

Oh how I love to hear those words from the pediatric cardiologist!

Natalia had her yearly check-up this morning and I'm so thankful my Mom was with me once again. I needed an extra pair of hands to feed Adam a bottle during the 2 hour appointment AND because since last year's visit Natalia has become Miss Independent. That translates to "if I don't want you to touch me or tell me what to do I'll make this difficult for ya!"

We started with the usual blood pressure cuff, weight and height measurements before going to another room for the EKG. Even though I'd been talking to her since yesterday about how the nurse would put stickers on her arms, legs, and belly and how it wouldn't hurt, she just DID NOT like it one bit! A few elephant tears and as many distractions as I could come up with later, she was done and on to the next room for her ECHO cardiogram.

This one wasn't so bad as there was a flat screen mounted on the wall opposite the technician and Sesame Street was on to help distract her from the gooey stuff on her belly and the scanning wand...oh, and the nurses had given her a candy bracelet. (You remember those? The ones you bite the candy off the stretchy string?)

Then we were in another room and talking with Nurse Julie while she listened to Natalia's heart and asked some questions. The doctor came in after a bit and by that point Natalia had turned on the charm and decided the doctor's office wasn't such a scary place afterall! (It only took an hour and a half to get to that point! HA)

All in all, Natalia's heart looks great. We'll continue to go back once a year, and when she's 7 or 8 they'll also test her on a treadmill to check her function but they don't anticipate any limitations even then. The arterial switch surgery she had at birth was done well they said.

Thank you Lord for a good report and for a healthy growing girl!
:o)

It's Been 2 Weeks of Mother's Days

Yesterday I was in my usual spot--on the couch. Not how I would prefer to spend Mother's Day, but oh well. It became my usual resting place 2 weeks ago when the pregnancy all-day yuckies came to stay. I distinctly remember feeling nauseous for the first 4 months with Natalia, but somehow it seems worse this time. Maybe teaching full-time then was a helpful distraction, maybe having a 2-1/2 year old to take care of makes it harder the second time around...or maybe the yuckiness IS worse. Who knows?

My consolation is that this too shall pass--AND many people have had it alot worse! I know someone threw up every day of her pregnancy and even during labor. Thank you Lord that that is not the case with me! I have been able to keep things down...so far.

All that to say, my hubby has made the past 2 weeks the greatest Mother's Day gift of all--he has stepped up to the plate in such a way that it's been humbling...very much so. He hasn't blinked at the prospect of cooking dinner and cleaning up after he's put in a full day of work. If I plan the meals and make him a grocery list, he's all set to go. Smells, particularly in the kitchen, have been especially problematic for me. Just the thought of cooking sends me reeling. I have enough trouble just opening the pantry cupboards and refrigerator, so his attitude and desire to serve me in this way is HUGE. It's hard for me to be on the receiving end of such love without feeling guilty! But, I know that instead of letting my thoughts go there, I can give glory to God for the grace He's given and to honor my husband for his sacrifice. Even though I am undeserving, he lavishes his love upon me--what a picture of Christ and the glorious gospel.

~~~~~~~~~~~~~~~~~~~~

I thought I'd give a few more details to let you all know what's been going on. I've had two doctor's visits so far; the first to confirm the pregnancy and the second to have an early sonogram. The sonogram was to confirm a heartbeat and to determine if we were having multiples--chances were a bit greater because of the medication I had been on.

So, last Friday Pete went with me to my sonogram. We're just having 1 baby, and the heartbeat looked and SOUNDED just great. Considering that the baby is the length of a kidney bean, this was so remarkable! Pete's convinced he saw something between the baby's legs--he's delirious. :-)

This pregancy will be considered high-risk, but not, if that makes sense. The doctor's will order special tests along the way, due to Natalia's heart defect, but they don't expect to find anything. This is because there are no known hereditary/health issues in our family that would have caused her defect. You can click on this link for an explanation of TGV (Transposition of the Great Vessels).

We haven't been anxious about it--God has continued to grant us peace that He is sovereign. He carried us through the fire before. But we are praying for a healthy baby and a "normal" delivery this time around.

Thanks for sharing our excitement with us! I'll continue to post updates.