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Tuesday, October 27, 2009

News...

I know some of you who read are wondering what's going on with Addison. We are still waiting to hear all the results from the metabolic testing - should know something hopefully this evening or tomorrow. This is a genetics thing and any of you who know anything about genetics know it is confusing!!!

Concerning to momma is the fact that she has started diarrhea diapers again. Poop never meant so much to me. Pray for those to cease!

Kate is doing well through all of this - we have gotten so off schedule and honestly it may be a while before things calm down. One milestone we hit last Friday coming to the hospital to pick up mommy and baby Addison - the WHY QUESTIONS!!! There are lots of why's in her life right now, so I guess it was fitting.

Why? Why? Why? - wish I knew!!

Saturday, October 24, 2009

Addison

I'm sure that most of you who read my blog regularly have already heard on Tuesday night we had basically the same event happen that was described in my previous post. Chris said he liked how I detailed things in that post, but I don't think I can relive it again, so I'll just give you the facts without all the emotion - sorry if that is boring!

Addison has been diagnosed with FPIES- Food Protein Induced Enterocolitis Syndrome. This is a very rare allergy of soy, dairy and rice - possibly more later. Unlike an anaphylactic allergy that is responsive to epinepherine (epi-pen) FPIES is not. If she ingests, we will have episode like the last two and immediately must call 911. Her BP goes low and she needs IV fluids, etc. at the hospital to recover. In talking with the allergist Friday, it appears that Addison is on the extreme end of FPIES - it is really scary and dangerous. I will become the organic allergy mom! One encouraging note, some kids grow out of FPIES around 3 - that's our prayer.

This journey is not over due to the metabolic tests. Initially the genetics doctor did not think her high levels were worrisom, but they continue to be elevated. After re-testing Friday morning, her pyruvate and lactate levels are elevated and in the critical levels. A Genetics doctor discussed with us keeping her and beginning work ups to see what is going on metabolically or going home, resting and seeing/talking to him on Monday - hardest decision I've made, but her little body had no more veins to poke and she needed a break (so did momma and dadddy). He feels that the levels should have normalized in this time frame. This is all very confusing, but hopefully we will have more answers soon. We were instructed to return to the ER if she presents with any atypical behavior. Pray for her safety and peace! Thanks for the prayers! We know God is in control!

Over the past two weeks God has been showing me how He worked this out. I'm not quite ready to post of all God did to prepare me and provide the best care available to Addison, but soon I will detail it out - it is so awesome how God goes before us and prepares the way!

Sunday, October 18, 2009

In the blink of an eye...

What is most precious to you could be ripped away. This is how I felt Tuesday night when Addison nearly stopped breathing and the ambulance was lost.


Happy, smiley self, baby Addison as we refer to her around here took a turn for the worse on Tuesday evening around 8:00. Chris and I had been out for dinner and left her and Kate for no more than an hour at our church for free childcare - I felt guilty, but I think for my marriage it is important to utilize these opportunities (not sure when/if I will get myself to again). We got home and started bedtime routine. Kate was fussy and tired, but honestly Addison seemed fine. Chris was taking off her clothes and a full out vomitting episode occurred. He turned her over and pounded her back and she seemed okay. We rinsed her off, etc. and I took Kate to bed while Chris finished up with Addison. Suddenly I hear a voice call out my name - Chris is sounding scared.


Addison had vomitted a second time and became white as a sheet and was not really responsive. She was breathing but very shallow and faint. She was wobbling her head and her eyes were opening and closing very slowly. Chris immediately told me to call 911 - he knew she needed oxygen fast. He was doing a great job, but was very scared. Addison looked scary and was not doing well at all - very unresponsive to anything.


Ambulance arrives after I called back to verify where they were at - I could hear them all around, but not in sight. I flagged them down and got them to the door. The paramedic took her straight to the ambulance and asked for a blanket. Chris followed - she knew he was a pediatrician.


Kate and I got in the car - its all a blur as to how I drove to the hospital. I repeated over and over in my head the exits I needed to take and out loud I was begging God not to take my baby. Kate never quit talking. She kept telling me to be patient we would get there. I was upset because I could not keep up with the ambulance. For those of you who don't know, I'll share with you a little bit of info about an ambulance ride. If they are running with lights and speeding, it is bad - this means the patient is not doing well. I was going 10 over and the ambulance was no where in sight- I was hysterical to say the least. Preparing myself for really bad news.


Finally, we arrive. I get into the ER as quick as I can - passing my friend Christine (I had called her to come get Kate), going through the metal detector and round the corner to find my baby in the trauma room with about 20 people surrounding her - nurses, pharmacy, attendings, residents - you name it they were there. I handed Kate to Blaine (Christine's husband, a resident with Chris) and I lost it - totally broke down. The social worker calmed me down and to Addison I headed. She was being poked everywhere - so many tubes, but she was crying - tears never sounded so good.


Addison had blood drawn, urine analysis done, spinal tap, CT scan, x-ray, poop cultures done, and probably more - and nothing has been found so far. Praise God, but it's hard not to have answers. They are concerned about her acid reflux - thinking she may have aspirated along with severe dehydration from diarrhea and vomiting causing the incident.


Looking back, her bowel movements had increased, but I thought that was good - her system was working better (I was wrong). While in the ER Addison received 3 boluses of fluid (equivilant to 3 bags of fluid for an adult) and did not have urine until 5 am the next morning - DEHYDRATION at its best. Addison cracked her first smile at 3 am, but didn't laugh until well into the next day. We spent three days hooked up to IV fluids praying she would start eating by mouth better and eventually she did. She stayed awake for about 5-10 minutes at a time for two days. I'm here to tell you this little girl was sick!!


Shortly after things calmed down in the ER, I found out that Chris had to bag her in the ambulance - I knew it was bad if they were running fast with lights. Praise God Chris was home, this might have had a different ending. The paramedic was uncomfortable with the pediatric patient and was not responding real well. You are never supposed to have to bag your own child, but Chris was able to - how, I have no idea. At one point in the ambulance the paramedic told the EMT to call ahead and let them know it was worse than expected - it was bad! They labeled Addison as ALTE - Acute Life Threatening Event. They were prepared for the worse.


No more questioning why we are here - God brought us here for such a time as this. Chris was off for three days and encouraged to be with us, attendings, the program director, tons of residents all came to check on Addison and gave their opinion. God has provided Chris and I with great friends Blaine and Christine and they totally stepped up for us. I was hysterical with Blaine on the phone and he knew they were needed. They took care of Kate for us without any hesitation. God has provided life long friends for us. Christine and I have had lots of adventures together already and I know we will have many more. Our church family visited, called and prayed for us. It is so difficult to know how your church family will come through for you until a need arises - they were there and have continued to check on us. We praise God for providing them for us.


I will never be the same. One thing that kept creeping through my brain while I was speeding to the ER was I have no regrets. I have rocked my sweet baby to sleep just about every night since she has been born. She is a fussy little toot at times with all her tummy issues and acid reflux, but I have found so much joy in her. I have left the dishes another day, the laundry in baskets and the clutter around the apartment to spend more time with my girls - not a regret one! Why God allows us to go through such tramautic events I'm not sure, but thankfully when it is all over we have Him to trust in, right now that's what I have to do - it is so hard to sleep.


Prayer - the prayers that went up for this little girl were numerous. All over Oklahoma people were praying and in Arkansas the word spread fast too. So many people lifted up my baby - people I didn't even know. My brother-in-law called a friend who was with a group doing PX90 and they stopped and sent up massive prayers. Prayer works! I truly believe my baby is here with us today because people prayed and God allowed her to stay here on earth with us longer. He provided Chris with wisdom, knowledge and the ability to work on his own child. He simply allowed Chris to be off of work (one of three days for the month). He provided a quick friendship with Christine which allowed me to totally focus on Addison while Kate was with her.


GOD IS IN CONTROL!

Friday, October 16, 2009

Addison is home!

You may or may not know that we've been in the hospital since Tuesday - got home this afternoon. Haven't had much sleep - brain still isn't working that great, but praise God Addison is doing better. It truly was a scary time. Just wanted to say thanks to those of you who prayed Tuesday night and have continued. I'll give the full story soon, but pretty exhausted at the moment.

Saturday, October 10, 2009

There's this guy...

Who is extremely sleep deprived and finds himself missing the last 5 minutes of any show (wait, he doesn't have time to watch television) he is watching. Misses his girls tons when he is working, but makes the most of every moment with them.

And looks really um, "HOT" in a white coat - especially a long one!

Chris, Daddy we love you and miss you so much. Thanks for working so hard to take care of us and even though life right now seems impossible most of the time you could not make us any more proud. WE LOVE YOU!

Friday, October 2, 2009

keepin it real...and two beautiful girls

Okay, so I have totally dropped the ball on "my plan" - life's too short to dwell though, right!!! So, here is a quick catch up on the Robertson's and hopefully I'll get back on track with blogging! Chris was on vacation the last full week of September - loved every minute of it. He started Wards on October 1 - urgh! He only has three days off for the month, three overnight calls, four long calls (late evening) and a two day retreat - single parenting at its best!! - just kidding, well kind of anyway. He is all here when at home and is the best daddy in the world. These hours are killing him, but he knows God has a plan for him. Addison was 3 months on the 22nd of September and Kate is approaching 2 1/2 at the end of the month. A friend from church told me about a dance class her little girl is in and they needed a couple more little girls to keep the class, so Kate joined. She loves it so far and is so stinkin cute. Her teacher is one of the minister's wife's at our church. Isn't God great! Addison is giggling and smiling so much. She is a bit spoiled - colicky baby = spoiled baby, but she's definitely a keeper. I took them to have their pics made today and I fell in love all over again. Here are a few.