Eventful Weekend

Trying out the new tooth brush from Nana and Papa

Snoozing little angel

Playing with cars

A little fishing

Boo boo before stitches

Playing while waiting for doctor to come back for stitches

Well the weekend started off innocent enough. Went to Pinkilicous with the family, had a great time. 

Sunday we spent the morning playing at the house, just relaxing and having a good time. We played cars, fished, and hide and seek among other things. Well after lunch Jack and I were running around playing and he ran from the kitchen into the living room where we had a small sofa table behind the couch with 2 glass vases on top filled with shells and candles. Well he hit the corner of the table and the vases tumbled off, 1 hitting his head and shattering. I was the only one with shoes on and I was right behind him so I picked him up with glass all over the ground and we went into the kitchen I only saw his forehead because of how I was holding him. But when I sat him down I noticed blood going down the side of his face. I immediately got light headed and started shaking, not because of the sight of blood, but because one of my babies was hurt. It just broke my heart. Right away I knew we had to go to minor emergency to see if he needed stitches. So we loaded the kids up in the car and headed to Immediate Care at his doctor's office. The wait was 2 hours so we left and headed to Saint Teresa's Minor Emergency where we waited an hour to hear the doctor tell us to go to the ER because he needed stitches. He was an ass so I'm glad he didn't stitch my baby up. So to the ER we went. They didn't give us a wait time but we figured we would get in quickly as there were only 1 other group in front of us, which they got called back within 5 minutes of being there. 3 hours later we got called back into a room where we waited another hour for the doctor to come in and say 2 words then leave for another 30 minutes. It was awful. Nobody would give us a time frame of waiting or anything and everywhere we looked were nurses and doctors just standing around chatting. And from what I could hear, it was about Thanksgiving plans. Really pissed me off. Even though my oldest Munchkin was in great spirits and being a total doll, I was furious that it just seemed like they didn't give a hoot about us. And then it took them another 20 minutes to get us checked out. I will say that the nurse that checked us in and helped us hold my baby down during the stitches was amazing!!! 

I would like to give out a MAJOR thank you to the Pringle's. They came out and got Lily so she wouldn't have to sit in the waiting area with all the sickies. And they brought her home and even cleaned up the thousands of shells and tiny pieces of broken glass all over in our living room. When I got home and saw they cleaned up, I about started crying! So thankful!!!

Glad this weekend is over though. Seems like we get great news (Lily being healthy), then that is quickly followed by the other getting stitches. 

Lily's Update

I received the phone call today that I have been waiting all week for. It was the actual specialist from Children's Mercy that called me. As soon as he told me who it was I thought this was either going to be a very bad phone call or a very good one. 

Dr. Heese explained that he got Lily's blood work and urine test back and everything was perfectly normal! YES LADIES AND GENTLEMEN, NORMAL!! 

He went on to tell us that we could stop with the medication and special formula. And we do not need to continue with our original plan of going back in a couple weeks to Children's Mercy. Also said our next question is probably why her acid levels were high two times in a row. Explained that it could be caused from any kind of medication that I had taken in the previous 2 weeks to Lily's birth that would have been out of the ordinary. I did not think of it while on the phone with Dr. Heese, but I was in early labor for 2 weeks before she was born and for those 2 weeks they (the hospital) were giving me morphin, lortab, and ambien... Kind of makes you think...

God has answered our prayers! Thank you to everyone who were sending prayers to heaven for our sweet little lady! You will never know how much it truly meant to us!!!! 

I would like to share another story, my cousin's oldest son has to have open heart surgery due to a hole in his heart. Please pray for him as I know we had amazing people praying for my baby, now my cousin's baby needs your prayers, he is only 14 years old and is in love with sports. Let's pray for a quick and successful surgery, quick recovery, and for God to watch over him and his family during this stressful time in their lives! 

Thank you so much!!

Our New Little Lady

Introducing Lillian 'Lily' Mae

One of many of Lily's newborn pictures

Snuggled in on our way to KC

Strapped in and ready for her first flight at 2 weeks old to Kansas City

Such a good big brother!

Goof ball

So alert

Happy Halloween! Our little race car and kitty cat

Snoozing

So pretty

Snuggle time during movie night

Already practicing her "duck face"

FAVORITE newborn picture

I know I know, it has taken me 3 weeks for my first post about our little angel. I wanted to wait till I knew as much as possible about our lady's condition.

I have not said much to anyone but when Lily was a week old we got a phone call from her doctor saying that her acid levels on her newborn screening were a little high and we needed to come in to re-do her newborn screening. Well we got the results back and her acid levels were even higher. After we received this news they informed us that Lily is at High Risk for Isovaleric Acidemia. It is a rare Organic Acid Disorder that only affects 1 in 250,000 babies. 

When we got this phone call telling us the news, our family doctor wanted us to come in right away to run some tests and so she can look her over again. This was last Friday.

Yesterday we flew up to Kansas City to take our baby girl to Children's Mercy Hospital to meet with a Genetics doctor. They ran some more labs and tests that we should hear back by this Friday. 

These past few weeks have been very stressful and emotional for our family and we ask to please keep my little Lily in your prayers. This can be a life threatening disorder and we pray that she does not have a severe case. We feel so blessed that the specialist is optimistic about Lily's case but will know more after we get her labs back this week and after we do some Genetics testing which will take around 8 weeks. 

Other than all of this, Lily has been doing great. She is not a fan of her medication but is getting better with her special formula she has to take. She is a great sleeper (during the day), and such a snuggler! Big brother is adjusting and doing well, he in smitten with her. As is Hubbs. We all are actually!

I am confident that whatever case of Isovaleric Acidemia that Lily has, she has the best doctor's possible and will receive the best care. We are becoming better educated on this Organic Acid Disorder and are ready to take it on.

Did I mention that our sweet girl decided to come 7 hours before she was scheduled to arrive? That's right, stinker wanted to come on her own terms. We went into the hospital around 11pm the night before and she was born at 12:35am on October 23rd. She was scheduled for 7:30am. She was 21 inches long and weighed in at 7 pounds and 15 ounces. Today, at 3 weeks old she is already 9 pounds and 5 ounces!! This makes the doctors more optimistic too because a side effect of this disorder is failure to thrive... Not her! Our little chunky monkey!!