Kayli at apprx 6 weeks old. Original blog date is June 11, 2009

Our miracle Sweet Pea, Kayli Dawn

by Kelly Essem Whistler on Thursday, June 11, 2009 at 9:12pm

Kayli had a check up with her Cardiologist today. He was very impressed with her weight gain. Normally babies with similar heart conditions do not gain weight because the heart is working so hard to compensate for the hole that it uses all the calories the little body takes in and doesn't have enough extra calories to gain weight. Average baby weight gain is half an ounce a day. Kayli is gaining an average of 2 oz. a day! Also, with her diagnosis, Edward's Syndrome (Trisomy 18), babies typically don't gain weight statistically... but we all know Kayli is so strong and doesn't understand she isn't suppose to be doing so well.
The pediatrician is even talking about cutting back her calorie intake because she is growing so rapidly and doesn't need the extra calories!

As you may or may not know, I have taken Kayli off the air canula (well, actually she kept pulling it off her face!) lol. She has been off it for 4 days now, and her oxygen saturation rate is actually higher now than it was when she was on the air. This means she is breathing completely on her own and is now able to keep her airway open on her own. Yesterday she was gaging on some mucus (I know, yuck) in her throat and she turned red. The nurse who was here told me to put her air canula back on her... I cleared out her nose and throat with the bulb thingy and then put the air canula on her. Her sats (blood oxygen saturation rate) dropped and was in the low 70s (yours would be in the 95-100 range) and her heart rate went up to the high 180s (200 is dangerously high). I kept it on for about 10 min. as I watched her struggle. Then I decided to try taking her canula off because she kept grabbing at it trying to take it off her face. As soon as I removed it from her nose, her saturation level shot up to the high 90s and her heart rate immediately went down to the 160s and eventually back down to 140s and 150s (normal for her). The nurse couldn't believe what she was seeing! Later I asked her why Kayli did better when I took it off and she said the only thing she could think of was that older patients who need a resperator to breath have to be sedated because their body's natural instinct is to fight it and breath on it's own... and that maybe she was doing that, breathing on her own with room air and no pressure from the canula. WOW is all I have to say! Amazing! I asked the cardiologist today if it was harming her or helping her having the air canula off and he said it doesn't help or harm her either way, it was just to help her breath and keep her air way open (she had low tone in her throat and needed the pressure to keep the airway open). Keep in mind, she's never been on a resperator and oxygen would be bad for her, so she was simply just on pressurized room air to help force her airway open. I think her reflex has matured and she is able to keep it open on her own now! Again, Kayli just isn't getting that she isn't suppose to do this! ( that's my girl!)

Kayil has a severe VSD (hole in her heart). The hole is in the wall between her two lower chambers. It is 9 mm in size (3/4 of the wall is missing/open). The wall seperates the blood with oxygen and the blood without oxygen. Her blood is mixing as it crosses the wall back and forth, so blood without oxygen is going into her lungs and being distributed throughout her body. The hole is unlikely to close as it would in other conditions because it is so large, and because there isn't much muscle at the location her hole is in so there isn't enough to grow and close the hole. Kayli also has a PDA (smaller hole in another location) and a bad mitro valve. She is adapting to her severe heart conditions and is still thriving!

I asked the Cardiologist when he thought a good time would be for Kayli to have the open heart surgery she needs. I was thinking that as long as Kayli is doing so well and adapting to her heart condition, we should push the surgery out as far as we can because there are no guarentees that she will be able to heal from the extremely invasive surgery and I want to spend as much time with her as we can before we take the risk of losing her. I was thinking we could wait as long as possible and do the surgery as a last resort as she desends with heart failure. Rob on the other hand, was looking at it as Kayli is doing well now, so give her the surgery while her heart isn't worn out and maybe she will have a better chance of surviving the surgery and fully recovering. It turns out, the cardiologist's opinion is this: Normal babies with her heart condition get this surgery at 3 to 4 months (if they survive that long) because it is a very risky surgery by nature, and newborns are even riskier. The more the baby weighs, the better chance of healing and surviving the surgery so the 4 month mark is usually the goal for surgery. Kayli is doing so well gaining weight that he wants her to have the surgery at 3 months because he thinks she will have a good chance of surviving and doesn't want to make her work her little heart in the conditions any longer than she needs to. He said we will plan the surgery for 3 months! (in 4 weeks). I have heard that other babies who have trisomy 18 have been denied surgery until they "prove" they can live for at least 7 months. We were even told to take Kayli home and that if she "proves" she can live for another 4 months, then they will give her surgery. As she lives each day, the doctors are impressed with her lack of "statistical setbacks" and they are more and more willing to "intervene" with her life by giving her the minimal help she needs to adapt to her symptoms.

Kayli will be having an echo this Sat. to see if her holes are closing and if her heart is enlarged. If her heart is enlarged it is likely to strain to pump and she is on her way to cardiac arrest. We are not expecting her heart to be enlarged because a symptom would be no weight gain...and she is gaining a good amount of weight. I am curious to see if our little sweet pea is oblivious to the limitations put on her... I wonder if her holes are getting smaller and closing? I wouldn't be surprised... just amazed.

As I sit here and write this, Kayli is sitting in her chair and is swatting at the dangling toys above her (a normal milestone but not to be done by a child with trisomy 18). Kayli coos now and even flashes a smile at us. We were told Kayli would be severely mentally handicapped and would not reach simple milestones such as lifting her head, smiling, sitting up, etc. The medical field told us that if she lived she would never mentally make it past 6 month milestones. We don't know what her future holds, but I am willing to bet Kayli will look past her condition and will ignore that she isn't suppose to thrive. I thank God for my stubborn little sweet pea!

I pray all of your children are as stubborn as mine are. I pray your children refuse to listen (to the medical field), and I pray your love gives them the strength to set higher goals for themselves than is imaginable.