An Answer to Prayer

As mentioned in the previous post, we had our 30 week appointment with the Pediatric Cardiologist this past Thursday. This was something we had been anticipating for quite some time as we knew it would be more telltale of Kenzie’s status at birth. Well… we are VERY excited to say that we were COMPLETELY blessed by the news we received!! To be honest, it’s still sinking in! There is absolutely no doubt in our minds that God is doing something incredible and has begun healing Kenzie’s sweet little heart.

To quickly recap…

After the nurse finished performing our echocardiogram, the same doctor we saw 10 weeks ago came in to update us on what he observed (he was watching from a separate room).  He started out by letting us know that her Pulmonary Atresia (un-functioning pulmonary valve) isn’t atretic anymore! WHAT!? This was ABSOLUTELY INCREDIBLE to hear because it means that although it is not functioning normally at the moment, it IS functioning and at least capable of moving. Although the doctor observed blood going backwards through the valve, the fact that the valve is moving at all is a substantial leap from where it was 10 weeks ago when it was completely stationary. What an AMAZING answer to prayer! In fact, in our last post, we mentioned this EXACT thing:  “We are praying with all that is within us that she would be completely healed. Imagine what a shock that would be to the doctors! But if not completely, we’re praying that they find that her pulmonary valve would be somewhat functional to allow some blood flow through to her lungs.”

Well if that isn’t a direct answer to prayer then I don’t know what is! And God being the one “who is able to do immeasurably more than all we ask or imagine,” (Eph. 3:20) didn’t even stop there! The doctor proceeded to tell us that although her pulmonary arteries haven’t been receiving nearly enough blood to develop, SOMEHOW they are growing and developing! (Hmmm, I wonder how!?) ;) He even said that they are on the small side of normal. This is an AMAZING blessing because it means that these absolutely necessary arteries are most likely capable of transporting blood to her lungs. YAY!!! We were SOOO pumped to hear this! As if that all wasn’t enough to make it a good day, he also informed us that her Epstein’s Anomaly (defective tricuspid valve) isn’t as severe as they suspected it to be based on our appointment 2 months ago. Overall, it is still a very serious case, but the doctor said her outcome looked more favorable than the last time he saw us!!! AWESOME!!

As for her heart size, it is still enlarged and still has fluid around it, but the status has remained the same since our last visit. We’re continuing to pray for healing in her tricuspid and pulmonary valves, that her heart would decrease in size, and that the fluid build-up would subside. From this point on we’ll go to maternal-fetal once a week to check the status of her heart size and fluid. If they see any signs of distress, she’ll be taken out immediately. We’re praying that she can remain stable for the next 8 weeks so that she can be as strong and developed as possible!

We can’t even come close to adequately expressing our gratitude for all the prayers that have been said on behalf of Kenzie up to this point. We are 100% certain that this is not a mere coincidence or an inexplicable improvement, but the hand of God working in the life of our little girl. THANK YOU for your faithful prayers!!!

God is so good! Love you all!!

Upcoming Appointment...

We humbly ask for your prayers for our appointment this coming Thursday, February 16. We have our second echocardiogram with the cardiothoracic specialist to determine where Kenzie stands in terms of her heart abnormalities. The last time we met with this doctor, she was 20 weeks old and it was at this point that he discovered her Pulmonary Atresia. At that time she was too little to determine how things would look down the road.  They didn’t know how much fluid build-up she would have, how large her heart would get, or whether or not her valve situation would worsen or stay the same. Now that she’s 30 weeks, they are going to take an in-depth look to re-assess her heart and determine a plan of action for how to address what they find. We are praying with all that is within us that she would be completely healed. Imagine what a shock that would be to the doctors! But if not completely, we’re praying that they find that her pulmonary valve would be somewhat functional to allow some blood flow through to her lungs. We’re also praying for wisdom for the doctor who will be assessing her situation and for peace and strength to handle whatever news we are given. As always, we can’t thank you enough for your love and prayers towards us and our precious baby girl!

January 25, 2012 (A post from Tiff)

Hi Friends and Fam! 

Just wanted to give an update since we haven’t posted in a while! Today we had another appointment with the neonatologist at Riverside. We were INCREDIBLY thankful to hear that Kenzie’s condition is still stable! YAY! THANK YOU LORD!! After being torn away from his morning workout to come see us, our doc told us that her heart to chest-cavity ratio has remained the same over the last 3 weeks, that she has very little additional fluid built up around her heart, and that she’s still growing strong! She currently weighs 2 pounds 2 ounces which is typical and is still kicking up a storm. The doctor also informed us that the fact that he was able to find her pulmonary arteries (although very small) shows that there’s still hope that some blood might be making its way through them to her lungs. Definitely encouraging news!

On a side note, as the weeks go by and we get closer and closer to her due date (I learned today, Lord willing, that I’ll most likely be induced around April 20), I find that I’m allowing myself to be more hopeful that she’ll be okay. Up to date I had decided not to decorate her room at all, not to have any baby showers, and I hadn’t even bought a single item in anticipation of her. Not that I don’t want to do these things of course, but just as a little protection for myself. Although the risks are still high, I believe the Lord is helping me open up a bit and let go of some of the fear of losing Kenzie. In fact, with a little urging from Ryan, we even bought some adorable little clothes for her yesterday (below). Not the absolute best stuff I’ve seen out there, but the cutest pieces we could find at Kohl’s! ;) They are so precious and I just love looking at them!

 

We are continually humbled by the love and support shown to us by you all with your faithful prayers and encouraging notes and messages. A few sweet things… Just today, my friend gave me a beautiful necklace specially made with the Matthew 17:20 verse that we had posted in our last update. How incredibly sweet!! Also, several of you sent us a link to the song “All of Me” by Matt Hammitt from the band Sanctus Real. He wrote this song after his son was diagnosed with congenital heart disease. I absolutely love it and I think Kenzie likes it too because she kicks a lot every time I play it! J Here’s the link in case anyone is interested: http://www.youtube.com/watch?v=ARIe3PUgu84

Our next BIG appointment is with the cardiothoracic specialist on February 16 when we’ll have another echocardiogram. We’ll post again as the time approaches!  

So do not fear, for I am with you,
Do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
-Isaiah 41:10

And no, I do not expect anyone to make me a necklace with this verse on it! ;) Love you all and God Bless!

<3 Tiff

January 5, 2012

 

 

So we had our appointment(s) yesterday and were EXTREMELY relieved to find out that the fluid around Kenzie's heart has NOT increased at all but has remained the same for now. YAY!!! THANK YOU for all the prayers for that specific request!!! We have no doubt that God heard those prayers and answered them. We want to be sure to give praise to the Lord and thank Him for all the positives as they come. Personally we know we can tend to skip over the good easily and go straight to the bad, but we certainly want to be sure to express our deepest gratitude for His blessings. THANK YOU LORD! Oh, and it wasn't even raining when we left Riverside...nice! :)

As for everything else, she is still growing and developing normally as far as they can tell. She's in the 50th percentile for weight/size which doesn't surprise us coming from two not-super-tall parents. One thing that did concern Ryan and me was the size of her heart. It of course has always been big but it looked as if it had increased a bit more in ratio to her chest cavity. The doc told us a typical heart to chest cavity ratio at this stage is 1 to 3 and hers is 1 to 2...meaning it's taking up just under 50% of the chest. He said this isn't at a super-critical level for now, but it's certainly a concern and something to monitor. If the heart continues to increase, the lungs won't have space to develop (which they cannot tell until she is born) and she will not be able to survive if she can't breathe on her own, let alone pump oxygenated blood. So we'll just keep praying about that one!

The other conditions (Ebstein's Anomaly/Tricuspid Valve disorder & Pulmonary Atresia) are still present and in the same condition as they were last time. Each of these will require open heart surgeries when she's born if they are not miraculously healed by God before then. Another thing to keep praying about!

A few cute little things: We got to see her swallow, cuddle up with her hands, kick up a storm (she's not a big fan of them poking around in there), and yes, we even got to see her pee. She's a stinker...must be her father's child. ;)

Wanted to share a verse that has encouraged Ryan and I over the last few weeks. Matthew 17:20 says "I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'move from here to there' and it will move. Nothing will be impossible for you." I think John MacArthur puts it best in his Matthew commentary when he says "Small faith can accomplish great things only if, like a mustard seed, it grows into something greater than it was. Only when small faith grows into great faith can it move a mountain."  We pray that throughout all this, regardless of the outcome, our faith would grow into something greater! Love you all!

~Tiff and Ryan

Saturday, December 31, 2011

We were overwhelmed by the response we've received from friends and family through cards, texts, emails, phone calls, and facebook posts/messages telling us that you would be praying for Kenzie and for us. This has been so encouraging and also a humbling thing for us. There's no doubt that we've felt God's peace and we know that's a result of prayer. We're confident that our God hears our prayers, and regardless of how He chooses to answer them, we know it's extremely important to lift them up to Him because He asks us to. Thank you from the bottom of our hearts! 

 

Just a quick update on what's coming up: This coming Wednesday, January 4, we have another appointment at the maternal-fetal unit in Riverside to assess how Kenzie's doing and any fluid build-up around her heart. This appointment is with the neonatologist…not the cardiothoracic specialist (meaning that they won't be taking a super in-depth look at her heart again at this point). They will of course check the overall size of the heart to see if it's increased, decreased, or remained the same. Up to date, every time we've gone to maternal-fetal, we've gotten progressively worse news, so we're not exactly looking forward to going here. (Not to mention it's been disgusting and rainy outside every time we've been there...we need some sunshine!) ;) We're extremely hopeful that her situation has at least remained the same, and that nothing new has developed. In addition to the prayer requests we mentioned in the first post (which are definitely staples), here are a few prayer requests for Wednesday's appointment. If you would be so kind to pray...

Medical:

• that the fluid build-up around her heart has stayed the same (or even better--decreased/disappeared) since our last appointment 
• that her heart size has also remained the same or even gotten smaller due to increased functionality in the pulmonary and tricuspid valves
• that they find no additional complications at this point

Spiritual:

• for us not to be anxious about this appointment, but trust that God has it under control
• to find joy in the time we have with her now (she's kicking like crazy!) and not fear or be reluctant because of what could be

Baby Kenzie





Hi sweet friends and family!

So just a little forewarning, we certainly aren't the eloquent blogging type, so please don't expect any literary genius coming out of these posts! :) We strictly want to update you all on what is happening with Kenzie so that you can best know how to pray for her. We honestly can't thank you enough for your prayers for both her and for us. This is not a situation we ever imagined ourselves being in, but we are committed to bringing God glory through it regardless of the outcome. We know that He is a good, loving, and gracious God, and we know that His ways are above our ways. We trust that whatever happens is in His will and in His hands...and there's no place we'd rather be.

Just a little history so that you know how we got to this point. A little over two weeks ago, we went in for our 20 week ultrasound to find out if we were having a boy or a girl. We had waited for this ultrasound for what seemed like FOREVER, and we were both sooo excited--not to mention convinced it was a boy. Needless to say, we were both somewhat surprised to hear it was a little girl...but super happy nonetheless! The tech finished her part and said she was going to get the doctor. Neither of us thought much of it, as we figured our doctor might want to check on a few routine things. The doctor came in and began looking around at the baby--specifically at her heart. She told us her heart was larger than the norm, but they weren't too hugely concerned about it. They wanted to send us to a neonatologist that specializes in these types of things. We were both somewhat shocked...and scared. Of course no one wants to hear that anything is possibly wrong with their baby.

To make a long story short, fast-forward a week and a half down the road and two appointments later. We found out that our little sweetie has several heart "abnormalities" as they are called. The first appointment revealed the less severe of the two--something called Ebstein's Anomaly. Basically the valve between the right atrium and right ventricle is lower than usual and does not function perfectly, meaning blood is kicked back up into the right atrium and causes it to enlarge, hence the larger heart. We were told although this is a moderately severe issue, it is operable and fixable with open-heart surgery after birth.

The second appointment revealed that she has Pulmonary Atresia, meaning that her pulmonary valve (allowing oxygen poor blood to go into the pulmonary artery and then into the lungs) is not functioning well or at all. As a result, blood is being kicked back up into the right ventricle and is not traveling to the lungs. Because of this, her pulmonary artery is not expanding and growing as it should. This is a huge issue if it continues this way because she currently receives oxygen into her body from Tiff, and once she's born she'll need immediate care in order to breathe on her own. Lastly, she also has a little fluid built up around her heart which is also something to monitor closely throughout the pregnancy to make sure she does not contract Hydrops. Hydrops is another rare condition of fluid buildup around the heart that increases the risk of heart failure. The doctors said they aren't sure if the fluid will increase or maintain the same level as noticed in the last echocardiogram.

And this is where prayer comes into play! We are absolutely confident that God can heal her completely in a heartbeat if He so chooses. At the same time, we know that He may choose not to. The doctor was also careful to let us know that although things are very serious, he's seen things change over time and miracles take place. So that is what we are praying for. Ultimately our desire is that God would heal her completely and receive all the glory for it. If not, we're praying that the doctors' God-given skills and giftedness would come into play and be able to fix her heart. For the time being, here are a few specific prayer requests:

Medical:
Please pray that...

• no more fluid would build up around her heart but that the amount would stay the same or decrease
• the amount of blood being kicked back up into her heart would decrease so that her heart would not enlarge anymore to allow room for her lungs to develop
• God would open up the pulmonary valve and allow it to begin working so that blood could flow through the pulmonary artery and expand the artery
• her Tricuspid Valve would also heal from the Ebstein's Anomaly condition and that blood flow between the Right Ventricle and Atrium would be normal
• she would continue to develop normally otherwise

Spiritual:
Please pray...

• for peace & comfort for both of us as we face this trial
• for us to trust in God's ways and desire those above all else
• for joy throughout this situation... that we would still be excited about the pregnancy and God's plan--not overcome with worries

Once again, we can't thank you enough for your love, support, and prayers! We'll update with new requests and info as it comes. We love you all!