Happily Ever After Starts Now

Happily Ever After Starts Now

Tuesday, April 23, 2013

Kekoa my fighter!!

This little man of mine has been such a blessing to me I never thought in mine life I would have a baby with so many health problems  I mean when he was born he slept a lot and I could never really get him to eat but I thought well he's a newborn who came three weeks early and well to be quite honest I was in heaven I thought wow this is the easiest baby ever and he just loves to sleep!!  When he was four weeks old I still had problems getting him to eat and then when he would eat it was like some one literally turned on a faucet puke all day long every where had to change bed sheets clothes multiple times a day!! I thought ok is there something wrong and then I told my self no he just hasn't figured out the whole eating processes , well then his poppies diapers were nothing like I had ever seen a normal breast feed baby poop it was dark and watery and he would scream too get it out and finally after he tooted it would come, and then he would have these random screaming episodes that scared me he would scream bloody murder clench his fists throw his head back  and it would go on for hours and then noticed his stomach was abnormal looking and I kept telling my self your being paranoid but I could not seem to shake the feelings that I had deep inside there was something so wrong with my baby!! I told my pediatrician and he said oh he probably just has reflux  and I thought to myself wait a minute I've had reflux and its not like that but they gave me medicine and off I went we'll nothing changed just got worse! So I took him to summerlin er they tried to tell me it was reflux they ran some tests everything seemed normal my pediatrician sent me to a gastro who told me it was something I was eating so I stopped eating soy, dairy, eggs, wheAt, and peanut butter! It was not the answer I was looking for but I tried it knowing deep down inside it wouldn't work.. I felt so helpless no one would listen to me, I was just the crazy paranoid mother I did not know what to do or where to  turn I began thinking maybe it is inside my head, I had prayed so hard and I just kept feeling like Heavenly Father please please don't forget me all I wanted was to have this baby be healthy and get to do all those things you do with newborns cuddle with them  and show them off and enjoy them, and I couldn't help but feel like maybe he was given to the wrong mom because I was so
frustratedwith all the crying and no matter what I did for him it wouldn't stop, I'm his mother I'm suppose to comfort him love him and make him feel better  and I couldn't do any of that, and then I was torn because I wanted my little girl to have the attention she needed and it just wasn't working I was so depressed with my situation and myself. I got on my knees and prayed the longest I've ever prayed asking heavenly to tell me what to do and that if it was his will that no matter what happened I would be stronger enough to deal with the outcome! That next day I thought I'll make an apt with this other pediatrician I have seen before and I wrote everything he did down and video tapped his screaming episodes I was so desperate for help! I took him to dr ky who I had seen before and loved and I thought well if he says nothing Is wrong then that's my answer! Dr ky admitted my son to the hospital and called a different gi doc because I did not like his previous one and he assured me they would find something!! I was so excited I know that sounds awful but it was an answer to prayers knowing I wasn't crazy! They had to start an IV which was terrifying for me seeing my three month old baby scream in pain and all I could think why us why my baby, babies should not have to go through this its not fair!! Being there made me grateful for my situation  it was a very humbling experience The Lord brought me to my knees thanking him for the trials I had been given ! After two long weeks  there they discovered his colon was distended and his rectum whole was not opening for him to poop which he was being tested for hirschsprung disease but of course it was out ruled but the nurses told me to have it checked again because its very hard to diagnosis and then they found out he had delayed gastric emptying which means his stomach takes about three to four hours just to digest one little meal, so instead of being happy I just felt like that was not it and I couldn't decide if I was making myself feel like it should have been something more serious or if it was not what I wanted to hear. I suddenly felt so upset with myself thinking you should be grateful they found something but why did I keep hearing this voice telling me Carlie this is going to be a very long hard process but you can do this. They sent us home with medicine that was suppose to help the muscles move faster so he could digest things quicker! Then it hit he got bronchitis and things became worse the medicine they gave me seemed to make him cry more and I decided I would take him to salt lake thinking they would cure him if anyone could help me it would be them, we'll long story short they didn't find
anything they told us it could take him growing for all the problems to arise or maybe he would grow
out of it. Walking out those doors I had never felt such defeat in my life so helpless I knew something was wrong with my baby and I felt so strongly he would not grow out of this and I wanted to
seriously hurt the next person that said that to me I felt like how would you know are you with him every day do you go through what I do, do you watch him cry in agonizing pain looking at you like why can't you help me mommy no you don't he make look healthy on the outside but he's not looks aren't always what they seem ppl  I know you think your helping by saying those things but you aren't  your not living this, as I wept feeling so angry with my father in heaven not understandings why no one would help me I was humbled by my amazing husband  realizing this is a trial of faith and I must never give up, I went to my knees feeling so ashamed how was I was quick to point the finger at the person who sees the bigger picture who has felt everything I was feeling  and I was so quick to throw in the towel that was satin weighing on me I learned a lot about myself that day and the person I want to become. Well nothing was getting better just worse they found out he needed to go see a urologist he had two hydro seals a hernia and a twisted urninary track all in his little boy parts, and then it was back to the gastro  he told me he was referring my son to a dr in la who was a motilitybspecialist he said she can help you well finally the insurance approved and it could not come fast enough he then got RSv and was hospitalized again I was nervous and scared and was given a priesthood blessing that things would be alright. We drove to la I was so nervous I didn't know what to expect or what to say and I had these feelings the whole time that I needed to be prepared that this my be a chronic problem. As we went to the appointment everything that could go wrong did had to call the insurance And have them call to let them know every thing was covered, as I met dr punatti I was amazed at how amazing she truly was she sat at her computer typing everything I said about what was going on she then explained to me he had so many problems she would work on one at a time she told me there is a very good chance this could be a life problem normally I would have had a melt down but I was prepared for that by the spirit and at that moment I knew The Lord has been with me every step preparing me for what's to come. I got home and started him I his prune juice and mirilax to see if it would help and well things got worse he got so so very sick lathergic ae fever of 104 that I could not bring down he had diherr a  wouldn't eat we took him to the er twice they said oh it's just the stomach flu and I yelled at them telling them they were wrong and I kept feeling like The Lord was telling me Carlie he is a gift to you from me and whatever happens know that it will be ok I thought I was going to loose my baby I couldn't handle this idea I knew it would be I'm but I was not ready for that and I didn't know if I had the strength to let him go finally he was admitted and they found out his had rotavirus and c diff which is and adult infection they have never seen babies get, we'll then came the white poop and then they found out his right kidney is mal rotated  and will most likely twist and his left kidney is full of fluid. I am grateful they are finding things this little boy is strong he got his blood drawn  and didn't cry!! I got a phone call yesterday from his pediatrician letting me know his iga is completely abnormal and now he has to see an immunologist I had no clue what iga was until I read about it it's and autoimmune disease that affects the kidneys And other things I'm sure I will find out more its a chronic disorder and its seperate from the other problems, I couldn't help but think Carlie you will raise him just like any other child you will love him and encourage him to be the best he can be, by not letting him use his health as a excuse , it's hard and scary but I know I have to be strong for him so he can be strong. People often Ask me so your done having kids and I say heck no I will have As many kids as The Lord sees fit yes this little boy will be hard but he has taught me so much so fAr even about my self I have stepped out of my comfort zone and had to become an actual adult but I would trade this for the world it has made me realize wha is important in life and its not about money or whos the best at what and who is the skinniest it's about living life to the fullest enjoying every moment! I love being a mom you greatest blessing and I finally feel like I'm getting good at it and its all about forgetting about your wants and needs to sacrifice for your kids and balance in our life to much of anything isn't good I know but I'm so grateful for my trials and I'm grateful The Lord saw fit to send this sweet boy to me and I know in heaven The Lord told him what it was going to be like and koa said I can do it Heavenly Father I love my life and will be heading to la next week!


Kathleen W.

So sad and it took so long to find out!
Can all this be corrected?


What a lovely post. You have been thru a lot with this little one but you will get thru it with the Lords help. Hopefully that little guy will start feeling better soon and they can find answers to all his medical needs. We'll be thinking of you.

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