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Friday, November 27, 2009

I'm thankful for...

This year Thanksgiving meant a little more. I am thankful for my sweet precious little girl, Addison who has blessed the socks off of our family. Pray for her as we go for more blood work on Monday. All her test results came back and she has elevated pyruvate, lactate and some fatty acids are also elevated. The pyruvate and lactate are being repeated and a second test is being run to tell us more about the fatty acids. It could all be due to diarrhea, but they have to rule out any other issues.

Kate is thankful for...
Daddy
Mommy
Addison
Daddy
Mommy
For having a trip

I'm so thankful for Kate and her spunkiness, Chris and his devotion to our family and my family for their support during these hard times - THANKS!

Wednesday, November 18, 2009

Forever changed...

November 13th marked the one month anniversary of Addison's first episode. Over the past month life has completely changed and I have been forever changed. I have not been checking email, blogging, even communicating with the world except for a few close friends. I needed time to digest all of what went on and needed time to sort things out. I have been at my parents house for two weeks on Thursday - wow, long time away from home. Chris has been working 15 hour days and has had four 30+ hour shifts since I have been away. I cannot say thank you enough to those of you who have continued to lift our family up in prayer - we still need it!

Addison is doing well and will celebrate 5 months on the 22nd of November - time truly does fly. Her almost two week stay in the hospital did us in on sleeping and eating, but I figure eventually things will work back out. She is having more labs done on the 23rd to re-check her lactate and pyruvate levels and I received a call today saying they are adding one more panel of tests - not sure what, the doctor is supposed to call and explain. Addison has become a very happy and playful baby, has two bottom teeth and LOVES her mommy!

Kate has started asking more questions recently about Addison's episodes. Just tonight she was talking to me about trying to help me be patient on the way to the hospital. She is slowly working through things as best as a two year old can. She is so excited about moving into our new rent HOUSE the first weekend in December. It will be nice to finally have a place with a yard to play in.

For me, the biggest issue I face is trust. Some people take Addison's diagnosis of FPIES seriously while others seem to think of it as any other allergy. Both are equally bad and life-threatening, it is just that FPIES is so rare most doctors do not even know what they are dealing with. Addison's allergy doctor told me I would probably always know more than a doctor seeing Addison in an emergency room- scary! Addison has to have IV fluids and must be closely monitored if she ingests anything with soy, milk, or rice - rarest thing ever. Her body goes into "shock". - low blood pressure, etc.

Chris is working hard and needs prayer. I know God has a plan and purpose for our family even in the midst of hardship. Never before has life seemed so scary, unsure and INSANE - but God is bringing us through!

God Knew...
Chris cancelled his rotation to ACH three times during his fourth year of medical school, to end up rotating in September of last year and loving it

In the hush hush process of ranking, Chris ranked OU OKC ahead of ACH (to be closer to family) and right before he submitted he just looked at me and said it's not right - I assured Chris we would be ok and to follow God's direction - there are no accidents!

Addison was born at just the right time. I was able to have excellent care from my doctor (placenta acreta with both babies) but all of her health care has been in Arkansas with the most amazing pediatrician.

After Addison's second episode we were almost dismissed and I was actually told by an attending to quit entertaining the thought of it being an allergy - how dare her! That was the only thing out of the ordinary on both days that Addison had an episode. To make a long story short, a new doctor saw Addison the day we were to be dismissed without a diagnosis and she immediately knew what it was - her friends child (who is also a resident at ACH) has FPIES as well - now you cannot tell me that is a coincidence!

There are so many ways that God has shown Himself to us during this time. He chose to allow Addison to continue to bring happiness to us on this earth. I cannot say I know what it feels like to lose a child, but I can say I know what it feels like to think you lost a child. I have never pleaded with God about anything like I did on the way to the hospital on October 13th - the words, Jesus don't take my baby poured from my mouth and please God protect her. I'm sure Kate thought I was crazy but I didn't know what else to do - the worse feeling I have ever felt.

I am returning home in a few days and I know life is going to be complicated with residency and establishing a "new" normal, but I feel like I'm ready for the challenge again after visiting with friends from Tulsa and getting time to take care of myself with the help of family. Thanks to all of you who held us close. Word traveled fast and I know the prayers from even strangers were heard by God - Thank you!

Forever Changed...

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!