Category: Ryder’s Heart

reliving it

The past week has been an interesting time for me. I think during the hospital stay, the surgery, the busy-ness of being home again I didn’t allow myself to think about everything that we went through.

And then all of a sudden, it hit me and came crashing down. I have been praying for some other sweet “heart familes” (the Harris, Stanley, and Wiley familes), not to mention the families that still haunt me from our stay at the hospital, and it has just all of a sudden forced me to finally go there. To finally grieve for what we went through, the burden we have carried, and the stress we have undergone.

I am, of course, still rejoicing that God worked through the surgeon’s hands and fixed Ryder. Healed her. I’m still overwhelmed at his mercy and love for us that he performed miracles for us and for Ryder.

But I’m also, quite suddenly, sad again. I have found myself unable to stop weeping at times… unable to get a grip.

I have read through some of my posts and it just breaks my heart all over again. I have been reading the story of Caden and have a mixture of thankfulness that our situation wasn’t quite as dire and a sadness that it never seems to be over for heart families. There is always a twist, a bump in the road, a struggle, a scare. Much like cancer patients- you are always worried that the next doctor visit won’t go well and that something else has popped up.

There is so much stress to any major medical situation. The stress of being away from home, the stress of the situation itself, the stress of medical bills (and bills and bills)…. I could go on and on. And no matter how well the surgery went or not, there is always stress after as well.

Its just an unexpected phase in all of this and in my life. Maybe its a form of post traumatic stress… maybe its just that I’m not nearly as strong as I had hoped.

I’m just so thankful for the prayers that continue to carry me through and to a God who loves me even when I doubt. He loves me even when I’m ugly, even when I’m scared, even when I turn from Him. He loves me despite myself.

I am still thankful and still amazed at the work in Ryder’s life. I guess I’m just going through “the next phase” – coming out of the storm.

And oh how wonderful it is to know that God is still there, carrying me through it all. He carried me before the storm, He carried me through the storm, and He will carry me coming out of it.

 

4 week cardiologist appointment

Thursday will be four weeks since surgery. Its just so hard to believe. Time is starting to go by much faster now that she is well.

As I told you yesterday, we had some concerns about her eating. She hasn’t gained any weight (actually lost an ounce) since her last appointment so that was a bit discouraging. BUT she had grown a whole inch in two weeks!

We also noticed that the chest tube site had some infection going on and so we are treating that. Let me tell you- it was just “by chance” that we saw this too and if it had gotten ANY worse we would have to be admitted into the hospital. Little miss Ryder definitely has someone watching out for her! I’m so thankful we caught it early enough.

So we are taking her off the fortified/high calorie formula mix to see if that helps settle her tummy. If she doesn’t gain weight we will start fortifying it with oatmeal. Hopefully she will get all straightened out soon.

The EKG and Echo-cardiogram looked great though, so that was wonderful news.

Here is Ryder getting her EKG- just a typical doctor’s visit for her.

We talked about doing rice cereal and they said it just didn’t really matter. They are fine with us trying it but if it doesn’t work out thats okay too.

Last night we did give her a little rice for the first time. It was so funny because she could have cared less what was going on but she sure was happy!


So the plan from here is to get weighed every two days until the weight gain becomes consistent again. We are treating the wound and hoping that clears up quickly.

All this just goes to show that recovery is full of ups and downs, highs and lows. Praying the next appointment is another high one!

smiles

To say that I’m overwhelmed by the love and prayers we have felt the past couple of weeks would be an understatement. I’ve received emails, cards, phone calls, texts, Facebook messages, etc. encouraging me and telling me that people are praying for Ryder. I’m so moved by all of these things that I don’t even have words to express how thankful I am for them. They have helped carry me through all the doubt and bad news.

I wanted to explain what is going on with Ryder now after her procedure so that everyone can know.

We went in last week to have the balloon cath done to open Ryder’s valve. When we got to the hospital the surgeon explained that the first thing he would do was go in with a camera and take pictures and look around the heart to make sure they knew exactly what was going on. From there they would determine whether or not they could do the cath.

Unfortunately, they found that the hole between her left and right atrium was much larger than they anticipated so he was not able to open the valve. The reason they didn’t do the cath was because the valve being tight is actually helping the situation with the hole. The hole is causing so much extra blood flow through the heart and body that the tight valve is slowing down all of that to the lungs. Which is a good thing for now. The valve is continuing to close over time though, so either way something has to be done. If the hole closes up we will go back and do the balloon cath…. and if not she will undergo open heart surgery to close the hole and open the valve.

So now we have Ryder on two different medications, twice a day, to help the heart not have to work as hard and to keep fluid off of the heart so that hopefully the hole will be able to close on its own. These medications are also supposed to help Ryder eat better. She is also on a higher calorie diet (just more formula to water ratio) to help her gain weight.

The GOOD news is that she seems to be gaining weight! Finally! The days and nights are easier because even though she still has a hard time eating, its more bang for her buck with the higher calorie intake.

Its seriously my full time job now (on top of normal care for a newborn AND a sweet little toddler) to make sure her feedings go smoothly and that she is eating well. It. is. exhausting. But of course, worth it.

And Ryder seems so so so much happier. And I have proof!

Yesterday she was playing on the floor and rolled over!!! I thought it was a fluke but she  ended up doing it three times! The amazing part is that the doctor told me last week that she would probably be delayed in physical activities until the hole closes up. Well she showed them!

Please continue to pray for Ryder that God will close this hole and that she won’t have to have open heart surgery. I know He can, and I am praying for that miracle. The doctors are not hopeful that it will, but I know God can do this if its His will. And please pray that if it isn’t His will to preform this miracle that we will have an easy time understanding and be able to get through it as easy as possible emotionally (And and I) and physically (Ryder).

 

peace

One of my wonderful friends here in Paris, Caroline, called me over the weekend to check in on Ryder. I was telling her all my fears and anxiety over what the next few months would look like and how Ryder would do after surgery. She kept telling me to take it one day at a time, which was exactly what I needed to hear.

But more importantly, she told me she would pray for my mind to be at peace. She told me about a verse in Isaiah and that she’d pray that verse over me during this week.

“The steadfast of mind You will keep in perfect peace, Because he trusts in You.” – Isaiah 26:3

So that night I got my Bible out and search for verses with the word peace. I realized that peace is exactly what I needed and that God is the only person who could provide peace for me and for Andy.

“Peace I leave with you; My peace I give to you; not as the world gives do I give to you. Do not let your heart be troubled, nor let it be fearful.”- John 14:77

“These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world.”- John 16:33

“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.” -Philippians 4:6-8

“Now may the Lord of peace Himself continually grant you peace in every circumstance. The Lord be with you all!” -2 Thessalonians 3:16

And here we are the day before surgery and I am completely overwhelmed with the peace that I feel. I am only human, so of course I am still nervous and a little scared.

But mostly I am peaceful. I am peaceful because I am praying peace for myself. I am peaceful because others are praying for me and more importantly sweet little Ryder.

Thank you for praying for us. Tomorrow will be tough, but I am so thankful for all of your prayers. You have no idea how much we are feeling them right now.

the good and the bad

We have had one of those crazy weeks again. Andy has been out of town and finally comes home today- hallelujah! Its been so hard without him here to help. I definitely am appreciating all he does more after not having him all week!

A couple of weeks ago I told y’all about Ryder having a heart murmur. Well on Tuesday we had the appointment with the cardiologist.

After doing another EKG that came back abnormal and doing an ultrasound, they found two holes and they found that her Pulmonary Valve isn’t opened as it should be and the walls/opening are getting thicker with time. One hole is in the right atrium and is very small, the other is in the left ventricle and is a medium sized hole.

So that you can understand a little better where everything is, here is a diagram of the heart.

So the GOOD news is… Ryder does NOT have colic after all! Praise the Lord! The reason she cries so much at night is because she is hungry. It takes her up to 3 hours to eat maybe 3 oz. We changed her bottle and that has helped so much, but not enough. She will drink an ounce and pass out on almost all of her feedings. Eating is just too much work for her and it poops her out. So by nightime she is starving and wants to eat nonstop for about 4-5 hours.

The other good news is that the multiple defects Ryder has are TOTALLY fixable. As I sat there talking about my precious baby’s heart, I couldn’t help but cry and grieve for my precious friend Rachel who lost her son from a heart defect just last year. I am so thankful that this can be fixed and she can live a normal life.

The bad news is that Ryder will have surgery next Thursday (Aug 18th) in Dallas. She is having a balloon catheter inserted into the valve to open it up.

We covet your prayers as everyone involved (our family, the surgeons, etc) prepare for the surgery. I remember how nervous I was about Rory getting tubes…. God was only preparing me for this! Its hard to think of your tiny 6 week old having surgery. BUT! I know everything will be fine and she will feel so much better afterward.

Little Miss is just so sweet. She smiles nonstop and adapts so easily to new people and scenery. I know she will do great during the surgery and I know she’ll charm all of her doctors and nurses!

Because let’s face it…. girlfriend is CUTE!