Baby Kaden and The November PCMC Service Project

I love this time of year, both because of Thanksgiving and Christmas.  It is a time to reflect on life, and how much we have been given.  I am excited to share this next story with you.   This story is from my cousin and his sweet wife.  This is a very personal story that has touched many lives as I am sure it will yours.  I am grateful for Jeanine for sharing it with us today.   

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

“I think there might be something wrong”.  Those are the words we heard at our 20 week ultrasound, words that we had never heard with our other 3 pregnancies.  The technician showed us his bilateral cleft lip, cleft palate, and the ventricles in his brain that did not look quite right.  We were sent to the Utah Valley Perinatology Clinic where further ultrasounds and testing showed us not only what we already had been told, but so much more.  Over the course of the next several weeks we had numerous ultrasounds and amniocentesis, each time learning a little more that “could” be wrong with Kaden.  At 32 weeks gestation we were told his chances of survival after delivery were less than 40%. 

Kaden was brought into this world by cesarean at 34 weeks gestation.  He was born on February 15, 2008.  My husband says Valentine’s Day that year came late for us.  He weighed 5 pounds 1 ounce, and was 17 inches long.  Due to excessive fluid in his brain his head measured that of a 42 week gestation baby.  He was born at the University of Utah Medical center and was immediately taken to the NICU where he was to be stabilized and taken to Primary Children’s Medical Center.  Within minutes of his delivery it became apparent that he was going to struggle.  At this point, many of his conditions were unknown and we were unaware that his body was incapable of survival so we took all steps necessary to keep him alive.  He was intubated at put on ventilator at four hours old because he was having a very difficult time breathing.  The NICU at PCMC was completely full and he was not able to go over until the day after his delivery in the evening.  The difference once we arrived at PCMC was absolutely amazing.  The staff were constantly checking on us and making sure we had what we needed and were always wanting to answer and questions we had.  They all were so knowledgeable with everything that was happening with Kaden.  The nursing staff was very professional and when there were parents in the room the staff did not talk to each other unless it was concerning the patients in the room.  Their expertise with these sweet babies with special needs was phenomenal. 

Within the first two days at PCMC through many tests it became apparent Kaden, without life support would most likely not survive.  An MRI showed us he had a something called Lissensephally, a condition where the brain forms smooth instead of full of bumps and groves.  Part of his brain actually never developed which is why his head got so large, his spinal fluid just filled up the empty space (and then some).  He did not have eyes, and he was missing a very large part of his maxillary bone so his nose was flat as a pancake.  His pituitary gland was very malformed so his body had a very difficult time regulating his bilirubin and blood sugar.  Our doctor, Dr. Null was incredible.  He took our whole family, our parents, siblings, grandma, and kids into a room and spent over an hour with us explaining what he could about Kaden and answering any questions anyone had.  I will never forget his reaction when he was asked what he thought we should do with Kaden, try to keep him alive, or let him go.  Dr. Null started to cry and told us that he doesn’t really know why God sends babies this ways but that we are all so blessed to have been given the opportunity to have such a special baby.  He told us that Kaden’s quality of life would be non-existent other than just laying there  He was unable to eat, or even hold food down so the only nourishment he was getting was intravenously.  He told us Kaden would be able to have a much better life if we just let him go.

The next few days we had several amazing experiences.  We were able to name and bless him.  They broke the “only two visitor’s at a time” rule and let us have as many people as we wanted around his bed it.  My husband and I were able to bathe him and we were able to spend some much needed time with him. We attended a parent lunch where we were able to visit with other parents who had children in the NICU and share our stories.  They also had tables full of items, mostly girl things, but a few boy things that had been donated and we could pick whatever we wanted.  I picked out a blanket for each of my children to have and took a picture of Kaden in it. They each have the blanket and picture in their memory boxes.  They also had a wonderful time for the kids called sibling hour for just siblings for NICU patients.  They had a nurse come and talk to the kids about their babies.  They had books for the kids with pictures of their babies in them that the NICU staff had taken.  They gave each of the kids a little doll and let them dress it and hook it up to all the tubes and things that their babies were hooked up to.  It was so great for the kids and they each still have all those things in their memory boxes as well. 

It was decided that we would take Kaden off life support on Friday, February 22nd. At this time the doctor’s were unsure of how Kaden would react if he did not have life supports.  He was not holding any food and all of his blood levels continued to rise, but he did do much of his breathing on his own.  The doctor thought he might be able to breath on his own enough to come home for a little while and spend some time with the family and die at home.   On the 21st the hospital gave us a hospice room filled with drinks, snacks and movies for the kids.  They took Kaden into it so that we could have as many visitors as we wanted.  This was also the first time our other 3 children were able to see him other than about a 30 second peak they got in the hall when he was being moved form the U of U to Primary’s.  They were each also able to hold him and touch him as much as they wanted, though it was a little difficult for them because he was connected to so many different things.  At the end of the day everyone went home and Kaden was taken back to his room. He was needing to be weighed in his bed.  In order to get a correct weight they had to lift him slightly to clear the weight on the bed and then lay him back down.  When he was lifted his breathing tube extubated.  It took about 30 seconds to realize exactly what was happening.  The respiratory therapist was immediately called and he was there within seconds.  It became apparent within the next few minutes that Kaden was not going to be able to breath on his own.  I know that among other tender mercies that week this was one.  We needed to prepare and prepare our children for his death the following day.

The day Kaden died has been the most beautiful and touching day of my life. It was so hard waking up that morning knowing what we were going to be up against. There is an amazing organization called “Now I Lay Me Down To Sleep” (NILMDTS). They provide professional photographers to come and take pictures of babies that have died or are going to die. They provide it all free of charge and give you a cd with all of the picture on it for free so you can print whatever you want. These pictures have been the biggest blessing in our lives. They keep Kaden alive in our home and we have so many precious pictures of him. The hospital had made so many preparations for us. They contacted NILMDTS , they made hand and foot molds for us and let us make as many hand prints as we wanted. They gave us a little box that we could put all of his stuff in. In this box we have the all of the wires, tubes, oxygen readers, and tape that was on his body. The doctor’s had constant check on us making sure we had what we needed and were aware of what was happening. We were given a very special nurse. They told us they chose her particularly because of her way of handling what would happen. She was amazing and was such a help to us the whole day. She helped us get everything off of him except for his breathing tube. The kids and my husband were able to get him dressed. It was so fun to actually get to see him in an outfit. He had been in nothing but a diaper since birth. We invited to this special day only our children and parents. My sister also came to help with the kids as we needed her. Everyone was in the room until it was time to remove his breathing tube. Our parents left and it was only Kaden his parents and his siblings. (The photographer was there, but she was so professional she was never in the way and was just constantly shooting pictures). The nurse pulled out the breathing tube just after 12:00 and immediately handed Kaden to me then left. I was overwhelmed to say the least. To finally get to hold him however I wanted, without anything in the way was incredible. The next three hours were pure heaven. After about an hour and the kids had all had a good turn holding him, we invited our parents in. They all got to have a turn holding him and having a picture with him. Kaden was obviously beginning to decline, his heartbeat was slowing and he was getting a little colder. They had given Kaden medication to help him be comfortable and he was very relaxed. It was such a blessing to not have to watch him struggle. Kaden for most of this time had been breathing very shallow. He almost sounded like a little cat with a wheeze that sounded much like a little meow. Abbie was holding him and said “Mom, when he makes that cute squeaking sound he’s really saying LOVE” Then Carter leaned in and listened and said “I hear it! He say’s I LOVE YOU!” After a while the boys started to get restless. Abbie was just holding and kissing Kaden over and over and telling us she loved him. This was her first “real” time getting to hold him. Our parents left and took the kids out for a walk. The photographer took a few pictures of just Spencer and I with Kaden. I was holding Kaden up against my chest and she told me I should unbutton my shirt and stick him right next to my skin. She immediately packed up and left. I unbuttoned my shirt and laid Kaden right next to me. I laid there for a minute and then all of a sudden I just knew. Kaden had died. He had left this life the same way he entered it, right next to his Mommy. Many people might not call Kaden’s life miraculous, but it was to us. We gave Kaden the middle name of Matthew, which means “Gift from God”. We know with out any doubt that Kaden chose his life. He knew he would have a broken body and he knew it would hurt and be painful, but he also knew it would be the body he needed for resurrection. I firmly believe Kaden chose this life so he could get back to the spirit world and help with the work going on there.

I am so thankful to PCMC and to the amazing staff at the hospital. I can’t even begin to imagine what our week with Kaden would have been like without their help.

You can read all about Kaden’s life at www.kadenmatthewmack.blogspot.com

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I was blessed to meet this sweet “Gift from God” before he passed away.   Jeanine and I both were pregnant and due two weeks apart  When I found out about Kaden,  I remember being very nervous and sad about all this happening to them.   When I went to meet baby Kaden I had the sweetest experience.  I can’t even begin to explain the spirit that was there and the closeness to Heaven that I felt being near him.   He truly is a Gift from God and I am grateful to have met him.  Thanks again Jeanine for sharing his story. 

The PCMC Service Project for November

Holiday ornament craft kits that the kids will paint and assemble.  These photos show some ideas, but you can really do anything as long as the kids get to assemble them.  The staff and Children greatly appreciate your support of meeting these needs. 

Here are some of the projects they have provided, but really you can assemble any ornament kit you would like.   

Bring the kits to the information desk at Primary Children’s, located at the north end of the first floor. Or mail them to..  Primary Children’s Medical Center, ATTN: Marie Hendricksen

100 N. Mario Capecchi Drive

Salt Lake City, Utah 84113

If you would like to read any other PCMC stories or service projects click here!