Thursday, February 10, 2011

Baby Ashley Part 2

Continuing from earlier...

And then we got the shock of our lives. Dr. Finley, Ashley's cardiologist came in for her pre-op exam. He commented on how much better her heart sounded, and said he had to go look over her echo photos, and then he'd be back. 

An hour later he returned. He started talking as he was walking into the room but for the life of me I can't tell you what he said. I knew what he was saying, but I couldn't register the words. All I know is that he was telling us that surgery was canceled.

Mark and I started crying, as we held Ashley. Dr. Finley went on to explain that her echo showed that the VSD was getting smaller. That combined with the fact that she improved so much with the extra medication, meant they could cancel the surgery, and just wait and see what the VSD did.

We cried the whole way back to the hotel. We went and told the roomful of waiting grandparents and relatives the good news. Then we all went out to dinner to celebrate. It was the first time that the four of us: Mark, myself, Thomas & Ashley had ever been out to dinner together like a "normal" family.
We were amazed, since Ashley's VSD is a type that is rare to close. She has a membranous VSD with an inlet extension, meaning it involves her Tricuspid Valve. Only 5% of VSD's involve the inlet area, and it's very rare for them to close. Also, doctors had been telling us for months, that it was impossible the hole was ever going to get small enough to avoid surgery, and that her heart failure was too significant. Yet here we were, surgery canceled.

Only two days later, after also seeing a GI Specialist to rule out mal-absorption problems, given her slow growth, we were on our way home, a week earlier than planned.

Since she showed such improvement, the cardiologist cut Ashley's medications in half, however, within a week of being home, she was back in heart failure: her liver was swollen, her weight gain dropped and her breathing rate was picking up again. Over the next two weeks her medications were adjusted until finally, she was on more medication than she had been previously.

Once the medications were increased, we started seeing some improvements - Ashley became stronger and more active. She was much more alert than she used to be. We honestly didn't realize how lethargic she was as a baby, but we received numerous comments from friends, family and neighbors on what a huge improvement there was. We couldn't see it, because we were around her all the time, we didn't see the difference.

Shortly after coming home, we were able to get rid of her NG tube. She had increased her intake enough, that while she was just meeting her daily minimum intake, she was doing it. We had to feed her every two hours, but it was worth it to be able to see her beautiful face.

I wish that the story could have ended there, that things would have just continued to get better and easier, but they didn't. Ashley's weight gain continued to slow down. Her liver continued to swell, and she started drinking less again. They increased her Lasix yet again. Doctor's also started talking about surgery again. Her cardiologist said that while it was worth giving her every chance to let the hole close, that it was likely she would still need surgery. Her family doctor also thought that surgery would likely still happen. Shortly after the last Lasix increase, one day I noticed that Ashley wasn't peeing as much as she used to. However, at that time, I didn't really think anything of it. However, after a week, her output volume continued to drop. Babies generally adhere to the rule of "what goes in must come out". If they take in 750 ml in a day, then roughly 750 ml should come out. With a baby on diuretics, it's actually expected that even more should come out, than goes in. I knew Ashley wasn't peeing enough.

We started weighing her diapers as we had been shown to. She was peeing out only 1/3 of the volume that was going into her. Eventually it got so bad that she was only peeing out 1/4 of the volume going in, which was getting near the dangerous levels, in that her kidney's were no longer able to filter out poisons such as creatine.

Her pediatrician finally ruled that the Lasix was the problem. She was on too high of a dose, and it actually dehydrated her. The purpose of Lasix is to reduce fluid volume in the body, which reduces blood volume, thereby reducing the workload of the heart. Unfortunately, her last dosage increase had reduced her blood volume too much, and it reduced the amount of blood circulating through the kidneys, which in turn, reduced her urine output.

Her Lasix was cut in half immediately, and she had to undergo blood work to check her kidney function, to ensure that her poison levels were okay. Thankfully, we had caught it early, and all was well. Left untreated, it could have led to kidney failure. It took a couple weeks, but her output did eventually pick up. Not as much as it had been a month or so ago, but more than it had been after the Lasix.

We had no sooner gotten over this scare, when it was decided that her NG feeding tube had to be reinserted. Ashley had gone from drinking 25 ounces per day, to only taking 18-20 ounces. Her family doctor felt one of the reasons that her urine output wasn't back up to normal amounts was because she just wasn't taking in enough fluid volume. Also, her weight gain had dropped significantly. She had gone from gaining an average of 13 ounces per month to only having gained 12 ounces in the last 2 months.

I was devastated. Part of me felt guilt, as it was our decision, with the doctor's okay, to take the NG tube out in the first place, and see how she did. Granted her gain had slowed even before it came out, but still... Also, I'll admit, I was enjoying truly seeing my daughter without a yellow tube coming out of her nose, and her cheeks covered in tape. But the main reason my heart broke was for Ashley - she hated the tube, and was a much happier baby without it.

The NG tube re-insertion did not go well, and it only lasted a week and a half, three or four of which days the tube was actually out. She screamed, she cried, she didn't sleep well, and oddly enough this time around, as soon as it went in her nose would get instantly congested, to the point that she actually couldn't even breathe while eating. She would want to nurse, but couldn't breathe, and would cry and scream.

I finally had enough, ripped it out one morning, and the next time she saw the doctor, I told her they will never put another one of those things in my daughter again. She said the difficulties this time around were likely due to the fact that she was so much older, and much more aware. Again, I felt the guilt. Perhaps, had we just left it in, she would have remained conditioned to it, and it wouldn't have been a problem.

Finally, on December 21st, 2010, Ashley had her follow up with cardiology. Two months had passed since the canceled surgery date. We were both anxious for this appointment, as we knew we were going to be informed about the likelihood of surgery being needed. We honestly didn't know what to think. On one hand, Ashley was the strongest and most active we had ever seen her. She was not only meeting physical milestones, she was meeting them early! At 6 & 1/2 months of age, she was sitting completely on her own, she was crawling, and able to pull herself up to stand.

On the other hand, she was still on three different heart medications, her weight gain was slow, and she wasn't eating very much, two of the major criteria for if surgery was indicated. We went to the regional hospital located three hours from our home, where the cardiology clinic was being held. Ashley underwent her 5th echo, her EKG having been done a couple weeks earlier at home. We went through all the normal preliminaries, weight and height check, and blood pressure check. We were then left to wait for the doctor.
I will never forget December 21st, it will always be a special day in my heart, for it is the day that Christmas came early for us.

Dr. Chen, the cardiologist who we were seeing that day came in, and did his thorough exam of Ashley. He talked in depth to us going over details of what had been happening the last couple months, where we were at now. And then he got down to what we were waiting to hear, the echo results.

Once again, we sat stunned, and I in tears, while listening to what the man in front of me had to say. Ashley's ASD was gone, and her VSD had closed significantly! Her VSD was now so small, they hadn't even bothered to measure it, and the pressure gradient had increased from 64 to 108! There was no sign of either her tricuspid or aortic valves leaking. Her echo and EKG were perfectly normal, her heart function was perfectly normal, and it was back to a normal size.

"Your daughter is never going to require heart surgery," he said. Tears ran down my face as I thanked him for the news. Tears ran down my face the whole way out of the hospital.

We were also advised that she was completely out of heart failure, and were told to remove all medications, that she didn't need them. He said he expected that her VSD would close completely - a true miracle, since we had been told by numerous doctor's that that was a complete impossibility. He cleared us for a year, at which time they would bring us back just to check and make sure the VSD had closed okay, and without complications - of which he didn't anticipate any.

When we got to the car, I started sobbing, absolutely sobbing. I can't even begin to tell you all the emotions that were flooding through me at that moment. It was the culmination of six months of agony, fear, frustration, anger, worry, love, stress, exhaustion. Of hospitalizations, endless doctor's appointments, tests, blood work and feeding tubes. It was tears of thankfulness and praise to God, whom I credit fully with Ashley's healing - though I do also think that a large portion of her miraculous healing is her own spirit and determination, but that too, was given to her by God. It was the relief and utter joy of knowing that she would never require 
 open heart surgery. It was the release of a lifetime lived in only six short months.
Ashley did phenomenal coming off of the medications, and within days not only did her appetite pick up, but her urine output is now back to normal. She continues to remain on concentrated calorie formula, as she still doesn't eat enough in a day to take in the required amount of calories, and her growth is still slow. 

At her December appointment, the cardiologist told us that Ashley's weight issues no longer have anything to do with her heart, and probably hadn't for a month or two. She is going to be evaluated by a team of speech, occupational and feeding therapists in January, to see if there is a physical reason for her poor eating and slow growth. Depending on the results of that, she may go through testing to see if there is a problem with how her body absorbs and/or breaks down proteins and nutrients. I, however, remain optimistic that there really is nothing else wrong, that she's just playing catch up from her very rough start.

Ashley also continues to battle GERD (gastro-esophageal reflux disease) and is on daily medication for this, as well as special pre-digested, hypoallergenic formula. We are hoping that she will eventually outgrow this.
While many times this journey has broken my heart, and certainly brought me to tears, it has also taught us so much. We have learned the value of family and friends. Without the emotional support and physical help of our family and friends, be it in the form of a meal dropped off, housecleaning or childcare, we could never have gotten through this.

I have learned more about faith, prayer and God in these months, than in my entire life. God is real. He is my source of strength, peace and comfort. I truly believe that he has a plan for all us of, in all things, good or bad, and I know that he has something special in store for Ashley.

And Ashley. She is the strongest person I know. She has been through more in her short life, than some will go through in a lifetime.

She has taught us the meaning of unconditional love. There were days when I was restraining her to insert her NG tube or perhaps her father was holding her while lab techs drew yet another blood sample. She cried and screamed through these painful procedures, and yet, when it was all over, she would look up at us and smile through her tears.

Even though we have caused her repeated pain, she loves us. Who else, besides God, is capable of that kind of love?

God knew we had lessons that we needed to learn in life: patience, faith, trust, perseverance, humility, strength, love, dependence and many more. So, he wrapped them up and sent them in the form of Ashley. She is my angel here on earth.

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