McKenzy's coming home day--5 years ago

I can't believe the time has come to celebrate McKenzy's coming home day again! Five years ago, she came home from the hospital after spending 70 days in the Neonatal Intensive Care Unit. For her, the time was not the typical roller coaster ride. She basically just needed to grow. She spent her time on the ventilator, than moved to c-pap, than room air with not many problems. She took the bottle the first time we offered it and LOVED having a bath. She was the biggest baby at birth, so she was the first one that we got to hold. Her only little glitch was that she couldn't pass her hearing test and so eventually she went on to get tubes in her ears. She didn't give us much trouble during her 70 day stay and she continued to be fairly easy once she was home. (For the most part!)

The first time that we got to hold McKenzy...doing kangaroo care...she was nine days old!

The first time that we got to give her a bath..she was so tiny!Jamahl was the first to greet McKenzy when we first brought her home.Today, five years later McKenzy choose to have hot dogs and Mac-n-Cheese for dinner, which was better than her first choice , hot dogs and mashed potatoes. Of course, we had to have cupcakes for dessert. She told everyone that this was her special day and enjoyed being the center of attention. We reminisced about her journey in the hospital and she was quite enthralled to learn some of the stories about that time in her life. She was however very bothered by all the things that we were telling her because she couldn't remember any of it!
McKenzy holds a special place in our family as the first born quadruplet. She is always telling everyone that she is the oldest and likes to use that to her advantage already. She is a little girl who embraces every aspect of life and seeks out the fun in it. If it isn't fun, McKenzy has no use for it! She still has a laugh that comes from her toes and her face and eyes are as animated as a cartoon character. She loves to hang out with the naughty boys at school and is proud is announce when she gets in trouble with them. She can be so stubborn which for now can be problematic but I know that stubbornness well, and it will suit her just fine in life. She is smarter than she will ever let on and loves to gives hugs and snuggle on the couch.

McKenzy, you keep us on our toes and always remind us that life has a less serious side. Thank you for your willfulness and persistence. The characteristics that you display will make you a very strong young woman someday. I enjoy that your life is an open book and we always know how you are feeling. Please don't stop trusting people and never stop laughing! The twinkle in your eye is contagious and we thank you for that! We love you!

Eating her hot dog with a goofy smile!Last but not least, a tasty cupcake for a sweet girl!

Miss Sidney

I just had to share what my introspective Sidney said yesterday. It was just the girls and I at lunch yesterday and we had to grab lunch out because we had just a little bit of time between ballet and school. The restaurant was decorated for Valentines day and there were hearts with cupids on them hanging from the ceiling. Sidney spent a lot of time looking at them and than said..

Sidney: "Do you know what those hearts mean?"

Me: "No, what do you think they mean?"--thinking to myself-"they are just decorations...do they have to mean anything????"

Sidney: " Those hearts are just showing the balance of love!"

Me-shocked..."Wow, I bet you are right!!"

Oh it is crazy some of the thing they think of...Sidney spends a lot of time pondering things...if we only knew how deep some of those thoughts really are!

Some resons my kids don't ride the bus

This week transporting the kids to school has been quite entertaining so I thought that I would share some of the stories.

**Monday, the girls teacher met me at the car with the news that Abagayle had decided to give herself a haircut during free time. She even kept the hair and handed it to her teacher who saved it in an envelope for me! Great...at least she cut her own hair and not someone else's! She didn't do too much damage but we all know now that ONLY adults cut our hair.

**Then, the teacher proceeded to tell me that McKenzy had refused to do any work. She got two check marks and a had to have a break because she was acting like a gumba! None of this surprises me, but I will admit that neither Paul nor I are ready for this sort of stuff. Jamahl, the rule follower has us spoiled!

**Tuesday morning, I get Jamahl to school and I am talking to another mom while he goes off into the classroom. I decide I better go in and tell him to have a good day. I walk in to see him standing there with tears welled up in his eyes. I immediately ask him what is the matter. He says, "look at the schedule..just look at it! We have reading tests all morning and NO recess." I try to reassure him that missing one morning recess will not be the end of the world and he says, "Mom, what kind of school takes a recess away from the kids. It is important!" Oh boy, what could I say to that?

**Tuesday afternoon, I reluctantly go to pick up the girls from school afraid of the report I will get. I pull in and here comes the teacher. "Oh great," I think, "now what?" I hop out and she says, "We found out who Paul's favorite princess is today!" I look at her very confused and she goes on to explain that one of the little girls brought a Jasmine doll for show and tell and as soon as she pulled it out, Keyan exclaimed at the top of her little voice, "Jasmine is my daddy's FAVORITE princess!" The teacher and the nurse got a great laugh out of that one. Take a look at this picture and you will know why he loves Jasmine!

See what I would miss if I didn't run around getting them to and from school. In those few minutes in the car, I learn so much! Of course maybe reading a note from the teacher would be a little less embarrassing!

Jamahl's 1st swim meet!

Saturday was Jamahl's first swim meet and we were all very excited. He started practices right after Thanksgiving on Mondays, Wednesdays, and Fridays so he was anxiously awaiting the first meet. He had to be on deck at 7:45 that morning and before he left he told us that he had his strategy all figured out, but he wouldn't share it with us! I was a nervous wreck but he was very calm, cool, and collected. He swam the 25 meter free style, 25 meter back stroke, and was in the 100 meter free relay. He did really great. He placed 8th out of 16 in the free style, 7th out of 16 in the back stroke, and his relay team placed 3rd out of 4. The most exciting thing is that his time in the back stoke is less than a second off of the "A" time. He felt good about how he finished and we are SO proud of him.

So here starts our endless hours in the hot sauna like pools. I know you can envision it...Paul getting there early to hold some seats for us (of course, that didn't really go as planned!), me arriving with four identically dressed five years olds, us girls traipsing across the crowded bleachers and everyone pointing and asking if the girls are two sets of twins, next we have to get the girls all up to near the top where Paul was able to find seats...three of the girls walk up, Keyan walks right in front of me so that I can keep track of all of her tubes...she of course falls on the stairs. Paul decides he better carry her which is no easy feat since she WANTS to walk and she has a nine pound back pack on her back. We squeeze past the family that refuses to stand up to let us all get by, and get everyone settled in. I finally sit down and take count to make sure everyone made it, breath a sigh of relief that we haven't lost anyone or had any injuries, and then....you guessed it, "Mommy, I have to go potty!" I'll leave the rest to your imagination!

Jamahl is the one crouched down in lane 5 getting ready to dive in

The score board after his 1st race

Grammie was a time keeper for the meet...she is right above lane 7in the white t-shirt

What to do?

New years Day arrived and I was determined to find something that we could go and do as a family. We were not going to sit and watch movies all day again if I had anything to do about it. The problem is poor Keyan. Everything that we came up with, she could not do. We thought about sledding, but Keyan suffers from hypothermia so that was out of the question. Next we thought about ice skating but not only is it cold, but I am not sure how she could balance on skates with her nine pound backpack on so that was out. We love going to the movies but I was NOT going to just sit...these kids needed to get some energy out! We couldn't go to the aquatic center or to the indoor water park, because Keyan has to be attached to both of her pumps for 24 hours a day and obviously, they are not waterproof. I was so frustrated. Was our entire family going to be paralysed by Keyans medical complications? We had to figure something out. Than, Paul mentioned bowling....I challenged him to find a non-smoking lane, he actually was able to do it, and so we all went BOWLING!!!! It was the first time that the girls gave it a try and Jamahl has done it one other time. We all made it up to the counter and measured our feet in order to get our "fancy" shoes. We found our lane, ordered munchies and drinks, Daddy found us all balls and got our information into the computer, and we finally started our game. The kids all had a great time and kept saying, "this is the best day ever!" (Jamahl was quick to point out that they had said that about our party the night before!) It only took us 2 hours to play 1 game!!! I was thrilled that we had found something that all of us could do and do it safely. We may have found our new winter family outing! Either that, or we need to move somewhere warmer. Anyone else have any other ideas of what we could do with the limitations that we have?

Happy 2010

Oh what a party we had! We brought the new year in with cheese and chocolate fondue, a game of Uno, a sparkling juice toast, beads, tiarras, hats, and lots of smiles. It felt so good to be all together celebrating in one place. The kids all had fun and Paul and I enjoyed the evening thru their eyes. We hope to have a year filled with health, happiness, and a lot of wonderful memory making experiences.

The Steps I Take

Warning: This is not a happy-go-lucky post. This is me, sharing my heart!

Keyan and I are finishing our 15th day in the hospital with no end in sight yet.....I can not believe it. My mind can not come to terms with the fact that I have no idea when we are going home. Nothing is going right. We make a small step forward only to take a giant one back, and although we have been down this road far to many times, it is really taking a toll on me. A couple of years ago during one of Keyan's admissions, I took to walking the halls. Floor nine center at Devos Children's Hospital is one big rectangle, seventeen times around the "block" is a mile. So, whenever Keyan is sleeping, or there is a nurse or therapist in her room, I go out walking. I even have a friend that comes and reads to Keyan so that I can go walk the floor.

The staff all know this is what I do and also have learned that I am probably walking because I need some time to think. It is extremely difficult to have deep rational thoughts while confined in four walls with a five year old! I am not inherently an exercise fan but I have learned that the rhythmic sound of my feet hitting the floor lulls me into a world where I can access the depths of my heart and deal with the emotions that boil up. My thoughts this time around have been more reflective than usual. Five years ago the girls were born in this hospital and thus we began on this crazy journey. Five years ago, I was discharged from the hospital and had to walk out to the car without my babies. How ironic that we are still doing that?

While walking I ponder life from Keyan's point of view. She is such a trooper with an amazing spirit. Through everything she is smiling...it is unbelievable. She never holds a grudge after we poke her for the hundredth time, she never gets angry at me for holding her down for another procedure. She greets everyone with her infectious, twinkling eyes, even though everyone that comes through her door is wearing a gown, gloves, and a mask. She is so tolerant and forgiving.

While walking, I try and deal with the guilt I feel about what she goes through. We do our very best to give her the best quality of life possible, but for me as her Mom, it is never enough. Is there something else that I should be doing? Is there more research for me to be seeking out? Do I need to advocate for her better? What can I do to make her more comfortable? I figure out calorie counts in my head, I go through the lab numbers from the morning making sure we haven't missed anything. I wonder what movies and crafts I can find to keep Keyan entertained in her tiny little room. I question the fairness of this whole situation, and wonder how my family is doing without me. I wrestle with thoughts that are to private to discuss but that haunt me in those quiet moments alone.

During my trips around the ninth floor I do a lot of talking to God. It is probably more like yelling, arguing, screaming, crying, and debating with God but you get the picture. I know we are blessed in so many ways but why does Keyan deserve to go through this? Why does she have to be separated from her family time and time again? Why is it that the nurses become my friends and my support system? How is a person supposed to stay "alright" when the abnormal becomes their normal? When will this ever end for her? Will she deal with this her whole life? Will this be the time that she doesn't recover? How long can she sustain a life of medical complications. I know these are disturbing thoughts but these are the things that I grapple with while pacing the floors. I think about how much I love her and how much joy she brings our family. Her idiosyncrasies that at times drive me crazy bring a smile to my face while I am putting one foot in front of the other.

So often, the nurses will ask how many laps I have done...the truth is I don't always keep count, I get lost in my thoughts. The thing I know for sure is that in the last five years I have walked far too many miles on this floor. Walking has become a survival technique for me, time to purge my head and heart, and prepare myself for the constant battle of taking care of Keyan. The thoughts bounce around in my head until I can settle them by walking. Who would have thought that I would find solace and some peace in the hallways that have become our home away from home?