Friday, April 13, 2012

Where We Stand

Remember that time Harper was born and after weeks in the NICU we walked out of the doors and took our baby home...but her heart was in reeeally bad shape and we just were waiting until a better time to do surgery?

Then, that time Harper had her first surgery and it went well...except for the whole "she still has a hole in her heart" thing. So we walked out of the doors and took our baby home, but in the back of our minds, we were constantly haunted by the possibility of another surgery?

Then this time when Harper had some random tissue growing in her heart that needed to be cut out and the surgery went well and we were supposed to walk out of these doors, hopefully to never come back and to not even have that immediate fear lurking anywhere around us?

Well, that's what was supposed to have happened. But it didn't.

Like Dustin said, Harper had some leakage around her Aortic valve before this surgery and immediately after. This wasn't surprising for anyone. What was surprising was when the leakage graduated from mild to moderate. It wasn't supposed to increase. At the time, Harper's heart was under a lot of stress...I mean, we were just a few days out from surgery, she had a lot of excess fluid all over her body, and her lung had collapsed after all. So the hope was that after things calmed down and we got all that fluid out, the valve would look different.

So even though we weren't expecting another Echo before we left the hospital, Dr. Robinson ordered a chest x-ray, blood work, and another echo cardiogram for yesterday morning.

And then he came in last night to deliver more bad news.

The Aortic valve, which we were hoping would have gone back to mild leakage, is still the same. This, in and of itself, isn't that devastating. We're still just 1.5 weeks post-op and there is still time for it to calm down a little as the heart adjusts to it's new "geometry" (as Dr. Robinson calls it).

So, the new and discouraging part is that Harper's Mitral valve now has a moderate leak as well. What actually happened here was that it was damaged during the course of the surgery and there was just a tiny leak that was seen on the echo immediately following surgery. But that leak has also graduated to a moderate level.

Just for clarification, I have no idea what moderate means, but I do know that Dr. Robinson's unofficial scale only includes mild, moderate, and severe, so moderate seems just a little too close to severe for me to be comfortable with it.

So the Aortic valve leak can be somewhat controlled with medicine, which Harper will be on for years and possibly life. There aren't any outward symptoms of this leak, so the severity of it will be determined by regular echo cardiograms.

The Mitral Valve leak, however, can cause symptoms of heart failure...kind of the same thing we dealt with before her first surgery to repair the VSD: not eating, vomiting, rapid breathing, clamminess/sweatiness. This valve does not respond to medicine and the severity of it is directly related to the severity of her symptoms. So we can check it with an echo cardiogram, but that information is only relative to how her body is handling it. It can look like a severe leak, but if her heart is handling it well, nothing will be done. However, it could also look like a mild leak on the echo, but if it is causing heart failure, obviously something must be done. And that something is...you guessed it....open heart surgery to repair the leak.

The plan now is to just go home and closely monitor Harper with Dr. Robinson. We are hoping to go home tomorrow, but I've learned not to get my heart set on anything. I can't wait to get our family back under one roof. I feel this intense restlessness in my soul when we are in three different places, like we have been this week.

As Dustin said last night, "I'm just so tired of bad news." We are pretty weary of this routine. I feel like we barely escape one problem, just to run straight into another one. I was hoping to get her heart all sorted out before she was to an age that she would start remembering all of this. More than anything, I just want my baby's heart to be fixed, but I'm beginning to think that may never happen.

I could go on and on about the heartache and disappointment I feel, but I'll spare you that. What I do know is that I have to come up with a better coping strategy than the crying all the time, anxiety, and depression I resorted to these last couple of months. I think I'll just go with denial this time. I want to live our lives as full as we possibly can. I want to have fun with my kids. I want to worship with our church family in Snyder. I want to serve others and teach our children the kindness and generosity that has been so richly shown to us. I want to forget about valves, and oxygen saturation, and heart failure. And while I can never really forget, I can choose to not let it be my focus and consume me.

So we'll walk out of this hospital (hopefully) tomorrow, knowing that there is a good possibility of coming back, but I'll hope that one day...it will be different.

Saturday, April 7, 2012

Roller Coaster Rides are Overrated

This is Harper’s daddy writing to you by force of Harper’s momma.  Let me catch you all up to speed.  As you know Wednesday night Harper was put on CPAP (which is basically a pressurized breathing mask that has been a thorn in my flesh) and breathing treatments, and by Thursday morning her lungs were looking much better.  A cardiogram was performed on her heart to see if there were any problems with the heart which could be causing, or at least contributing to, the lung problems.  Her aortic valve before and after the surgery had a small amount of leakage, which is why the surgery was performed.  The echo cardiogram showed that there was more leakage than before and was definitely contributing, if not causing, the lung failure.  The lungs and the heart are tied closely together and if there are problems with the heart, such as a leaking valve, then the lungs will suffer as well.

So what caused the greater leakage in the valve?  For the surgery, the doctors had to go through the valve to remove the tissue that was causing the problems.  The tissue removed came right up underneath the valve and after the tissue was removed, the geometry of the heart was changed.  You can imagine the swelling and shock her heart must be in and so these factors are most likely the cause of the new leakage.

The plan of action decided on Tuesday morning was and still is to put Harper on diuretic medicines to get rid of the excessive fluids in her body and especially her lungs.  They also put her on other medications to make the heart pump more effectively and efficiently.  Then we watch and wait to see if her heart will settle down and the valve will work like it did before and right after the surgery.  How long we wait, we do not know.  The doctors are confident that the condition can be treated with medication and without further surgery, which is of course a big relief.  Just keep praying for my sweet baby.

Yesterday, Harper showed signs of improvement.  The fluid in her lungs decreased significantly and she was awake for small periods of time, but with very little energy.  She was taken off the CPAP during the day and continued the breathing treatments, while at night was placed back on the CPAP.

Amy and I try to take shifts with Harper at night and I had the early morning shift.  She woke up and they took her CPAP off and put in the oxygen nose deals (pardon the lack medical terminology but what did you expect?) and looked much better but made no sounds and just looked at me with her big sad blue eyes.  When Amy came in, Harper immediately started crying and was not satisfied until I was replaced by her mother in the bed next to her.  For the next two hours Harper gave us an ear full, not really crying but just letting us know that she was there and was not too thrilled about her current situation.  It was music to my ears because I knew we had reached a turning point.  Harper has been slowly improving today, although she is far from being where we want her to be, so please keep praying for her and for Amy and me.

This, as expected, has been nothing less than heart breaking, to see my little Popper in such pain and has certainly been a torturous roller coaster ride that we have no idea when and where it will stop, which is almost as bad as seeing her in pain.  If you have babies, do me a favor and give them a kiss the next time you see them and lavish in their spirit and energy for it is one of the pure and delightful things in this old world.  Tonight I miss my spirited and energized boys and wish I could kiss them and I miss my Harper, the one who scoots across the wooden floor and squeals as she chase after her brothers. Goodnight, my sweet babies and hopefully we will all be together soon.

Thursday, April 5, 2012

Happy Birthday, Popper!



Here's a glimpse into Harper's first year of life. This first year has had a rough beginning and a rough end, but God has been merciful and faithful to His promises. He has watched over our little girl and our little family and we praise Him for His protective hand and for sending us comfort in our hardest moments. I especially thank Him for making sweet Harper especially for me. What a blessing and inspiration this feisty little girl is!

 Warning: this slideshow is kind of long, but it's sure to make you smile at least once.


video 

Surgery Day Two

Today started off great! Harper got rid of her catheter and her feeding tube, she came off the ventilator, and she devoured her first bottle. It was amazing to watch the transformation! The best part of today was that I got to hold that sweet baby in my arms again. That is such an answered prayer and it did this mama's heart soooo good!

Unfortunately we had quite a set back this afternoon that we are continuing to try and work through. Harper's breathing became very rapid and she was sounding very congested. In addition to that, she was running a pretty high fever. Chest x-rays showed that Harper's right lung has collapsed, probably as a result of the extubation today. It took several chaotic and stressful hours, but she is now stable and pretty peaceful. We are trying to avoid going back on the ventilator, so they immediately started the CPAP and treatments to try and open that lung back up. We won't know for sure how well it is working until we have more chest xrays done in a few hours, but her breathing and heart rate have both slowed down and it seems that she is doing better. Hopefully the xrays will confirm that and she won't be at such a high risk for reintubation.

The whole ordeal really took me off guard and was a stark reminder of just how quickly things can change. It's so scary to think that one minute she's fine and the next minute, every doctor, nurse, and respiratory therapist in the unit are all crammed in her room working at the same time. It's such a helpless feeling.

I want to celebrate the victories and blessings of the day, but I also want to ask you to pray for Harper over the next day and week, that her little body can hold up to all of this stress and she can recover from such a hard surgery. Such heavy matters that this little love of mine has had to face.

 She continues to amaze me with her strength. She is in a terribly uncomfortable situation right now, but she's tolerating it very well and I'm so thankful for that!

Praying for peace and healing for Popper tonight, tomorrow, and the rest of the week!

Thank you for checking on us.

Tuesday, April 3, 2012

A Blessed Day!

I know that so many of you have been praying for Harper and I haven't had a moment to stop and give you an update on Harper. We are all physically and emotionally exhausted, so I'm going to keep it short tonight.

Basically, Harper's surgery went the very best that it possibly could have. The surgeon got in there and discovered that he could, in fact, only cut out the tissue that was causing blockage, and that nothing else would be required. He actually saw the little residual hole from her first surgery and put a few stitches in to close that up, so that was a bonus!

Relief doesn't even begin to describe the feeling when we found out that they went ahead with "Plan A" and that it was completely successful with no complications whatsoever. The anticipation of this day has been a huge burden for several months now and to know that it is now behind us and successful...there just aren't words to describe the feeling. We are so very, very, truly, completely grateful. Grateful for your prayers and grateful for the way God answered them.

Harper's recovery is going to be rough, as today certainly was. She came off the ventilator, but they had to put her back on tonight, which was disappointing. Hopefully, her body can get some good rest tonight and we can hit this whole recovery thing hard tomorrow, getting rid of all kinds of tubes and wires.

Thank you again for your prayers. I mean it. Thank you!

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