Follow momma's journey with the strongest little man I have ever known.
April 30 - This morning at 4:22am Chris and I welcomed our beautiful baby boy Miles Jensen Pawlak. He’s 2lbs7oz of fiesty. He’s 14.5inches long and totally perfect. He is breathing on his own (miracle child) so the next hurdle is to see if he can pee. We are not even close to being out of the woods yet but that is how our first 16 hours have gone.
May 4 - My first time holding my Miles ❤️ we are so proud of him and his strength. He is surpassing all of our expectations and more. We are truly blessed and grateful. The Drs. are not even convinced I was given the right diagnosis so more testing has to be done but right now he is complete perfection. We are so happy
May 25 - Preemie thoughts he’s a whopping 3lbs 6oz, only 10 oz to go!! He’s everyone’s little miracle baby. We are very fortunate and so in love
June 16 - And we are home!!! (for the first time)
July 2 - Miles is back in the hospital and they are trying to figure out what’s going on with his liver because it’s making him sick. His kidneys are stable, but his liver is having issues now. He’s doing well we just need to figure out what his liver biopsy says and start the treatment. Praying for answers soon ❤️
July 28 - So, we FINALLY have a diagnosis for baby Miles. He has Alagille syndrome. When we heard about it a couple weeks ago it checked a lot of boxes. It makes so much sense now. He doesn’t have all of the symptoms but he does have the liver, kidney and heart ones. Here is a link if you want to read up on it. It’s not life threatening unless the liver goes into failure, then he would just need a transplant. But everything in his liver is fine besides the bile not flowing through because of the choleostasis. Genetics and liver biopsy confirmed this diagnosis. I’m just happy we now know what we are dealing with. He is also getting a g tube inserted on Monday morning to optimize his nutrition. He is 5lbs 4oz as of this morning.
Oct. 16 - This amazing super hero is having surgery tomorrow to fix his inguinal hernia. Momma is nervous but I know he is a strong little warrior - Came through with flying colours.
November 7 - Just wanted to give everyone an update on Miles. He had a g tube infection last week so we brought him to the ER. He got on meds but then the g tube had a small leak so they replaced it Monday morning. Monday night things took a turn for the worst. His breathing became laboured and he was really puffy from the IV fluids. The Drs turned off the fluids to help. I got a call a couple hours later that he almost went into arrest and they intubated him and blood immediately came out, he wasn’t doing well at all. The Drs didn’t know if he would make it. While we are not out of the woods yet, he is getting a little better each day. They have to keep him sedated and he’s on an oscillator to breathe. But they are slowly decreasing the pressure. He’s getting a blood transfusion right now as his hemoglobin is low. They are still trying to figure out why this happened. Please keep us in your thoughts. He’s a strong little boy and I’m amazed what he can get through.
Dec. 12 - Miles will not get out of the hospital before Christmas. Very sad news. He is still a very sick little boy and will be going to Toronto Sick kids to be assessed for a liver transplant and possibly a kidney transplant as well on January 14, 2019 for a week. We have tried to cover all the extra costs, transportation, day care for big brother, gas, etc but are now at a point we are asking for any financial help you could give. The worry over Miles is so overwhelming, that to have financial worries on top of this is more than Momma can handle. If you are able, please consider donating whatever you can spare. Smiles for Miles is our campaign as no matter what they may do to him or happens to him, he always has a special smile for anyone who sees him.