Wednesday, June 6, 2012

Time to face the music...

I've been debating on whether or not to even post this, because its so early into her life and I don't want to even acknowledge the possibility -  but in the end, this blog is for me to keep track of what's happened throughout this journey so that is what I need to do.

Audrina has not been doing very well, things have been slowly going downhill lately. It was subtle enough at first, but now its quickly becoming obvious something is happening. 

Audrina's weight gain had slowed dramatically over the past few weeks, and she was starting to cry more and more. Combined with her gas and lack of normal pooping habits, we discussed with her GI the possibility that perhaps we should consider stopping breastfeeding. They suggested that due to Addison's history, the first choice would be Neocate and I agreed. So we decided Friday to trial Neocate and see if her weight and mood improved. 

Just like Addison - in a matter of hours she was alert and extending her arms and legs. Kicking and batting her little arms which she had never done before. AND SMILING... literally less than 12 hours after switching her, she started smiling. The change in her was dramatic, she had been sleeping and lethargic almost all the time prior to this. We were deliriously happy with the difference we saw, and at the same time, we were keenly aware of the elephant in the room.. our knowledge that her response to an elemental diet was suggestive of her having the same condition as Addison.

Quickly though, we realized that she was getting worn out during her feedings - only taking 2 ounces or so and then refusing to suck. She was vigorous when the feeding began so we know she was hungry, but just quickly started to lose strength and interest. Her intake has dwindled to the point that we are getting concerned for her nutrition/hydration. 

Sunday evening, we note she is pale, irritable and not feeding well. Its now been 8 days without poop and I decide to give her a baby glycerine enema to relieve her. She lets out a tiny amount of mucus and nothing else. No poop Monday at all, but she is acting about the same so I decide to just wait it out. 

Monday night, we put her to bed and woke up maybe 20 minutes later to her alarm going off. I realized quickly it was not her apnea alarm, but that she was having a bradycardia. She is set to alarm if her heartrate drops below 50 beats per minute. That is fairly low so I was pretty concerned... it lasted almost a minute. She was pale and sweaty - I woke her up, fed her and held her awhile. The alarm didn't go off again so I got her back to bed and figured I would wait until morning to call it in to be downloaded. 

She woke up about quarter to 7 and I feed her, she does well with the feeding and falls asleep in my bed with me. At 8:30 she wakes up projectile vomiting - almost 2 hours after feeding. I immediately called the GI and we decided a milk of magnesia bowel cleanout would help us decide if the vomiting was due to the not pooping for 10 days or a different issue. Addison only ever threw up when she hadn't pooped - vomiting was our first sign that it has been too long. Then I call the cardiologist - they want to see her immediately so we get everyone around and head out.

She appeared at one point to have what may be a seizure. I'm not a neurologist obviously, but it was absolutely terrifying and I hope it never ever happens again. I was holding her and she was dozing in and out, and fussing. All of the sudden she went stuff from head to toe. She was complete rigid for maybe 5 seconds, her neck twisted upwards and her eyes flung wide open and rolled back in her head. Then she snapped back to normal and began a hysterical cry. She cried for a couple minutes and was very weak in my arms, then fell into a very deep sleep. I believe this could be a type of infantile spasm. I alerted the Neurologist who is going to run some tests.

Cardiologist reviews the Holter monitor we had to wear Friday-Saturday and said it looked fairly good, 5 SVT episodse up to 233 but they were short and she recovered nicely. Her average heartrate was only 135 so that is great. She went as low as 80 beats per minute, but it was only one short episode as well so not concerning. Then I asked him to pull up the monitor download of the bradycardia. He shrugs and tells me it doesn't matter because the Holter monitor would've picked up any problems. I insist he humor me and look up the report anyway, just for curiosity over how low her heart went. His eyes got kindof big and he shows me the report... Audrina's heartrate during the alarm dropped to just 21 beats per minute, for nearly a minute. I'm sure not everyone here is familiar with what is normal but anything under 100 is considered low for an infant. 21 is extremely severe - its low enough for oxygen deprivation to occur in the brain. If we hadn't had the monitor to alert us....she may well have gone into cardiac arrest if we did not wake her. Its just now setting in as I sit her thinking about it and reading about how bad this truly was. Cardiologist adjusted her medications and acted very non-chalant about it. He rushed out the door to take a phone call before I could gather my thoughts and ask questions. Needless to say, I will be seeing the pediatrician tomorrow to get a second opinion. Obviously concern for a seizure after last nights events could be a sign of neurological change from the episode.  

Took her to get a CBC, those results should be back in a day or two. In the meantime, its time we get some answers.... this feels totally out of control. Did the milk of magnesia in two large doses and she still did not poop! Finally did a pediatric enema and massaged her belly until some stool paased. She screamed through the whole thing and it was awful.... poop was entirely soft and yet she couldn't get it out. Just like Addison. I hate this! I hate the thought of this happening again. I am so scared that something could happen to her. This episode brought me into a whole new level of terror I never really experienced through the worst of Addison's issues.

Please pray for her to improve and that somehow this episode was a fluke and that she is unharmed from it....and pray for me to be strong in ensuring tomorrow this gets taken seriously if needed.


  1. I was just about to turn in for the night and thought I'd check up on your girls. I'm so sorry to hear that Audrina's health has taken a turn for the worse. I am so scared for you that I can not imagine how scared you must feel. Tired yet I'm sure you can not sleep. There is absolutely no one better than you to care and fight for your girls and they are so very luck to have you as their mother. You are doing the best you can and please do not second guess yourself. My mother-in-law (who is Native American) rubs a little bit of olive oil over the tummy to help with constipation. Maybe try this also. My nightly prayer will be said for both Addison and Audrina and we will also pray that the right doctor be placed in your path. You will be in our prayers as well. God Bless Kim and Thank You for loving your girls so so much.

  2. Oh Kim, I am so sorry that you are going through this again.I really hope that with both girls having similar issues the Drs will start thinking outside the box.
    I really hope you start getting some answers for the girls.

  3. Reese's Mom from BBCJune 6, 2012 at 3:18 PM

    Kim, I am so sorry you're going through all this. I pray for you guys and hope that this was a fluke and she starts to perk back up. Is it possible she is sick with a virus? I know there is a lot going on right now. Hope today is a MUCH better day for you all/!

  4. Do you use Neocate infant? I have 4 unopened cans. They expire August of 2012. Do you want them? Email me at

  5. Chloe's mom from BBCJune 7, 2012 at 11:58 AM

    It shocks me that you had to absolutely demand that the cardiologist look more closely at the data. Kudos to you for being such an amazing advocate for your children. I pray for answers, and I pray that your beautiful babies are going to pull out of this side-by-side in health and happiness. Perhaps the hidden blessing is that if there is some correlation between what Addison and Audrina are struggling with, that it will be easier to figure out with both of them displaying similar symptoms. Hugs and continued strength. You are a wonderful mommy!!!