Friday, March 30, 2012

A new friend.

When your child is admitted to St. Louis Children's hospital, you receive a lot of really thoughtfull gifts. Noah has received several knitted blankets given by volunteers, a pillow made by a local school, tons of information and reading material and last but not least Noah got a gift from the company "Build a bear". Build a bear gives donations to the CICU (cardiac intensive care unit) at St. Louis Children's hospital. One of our "welcome" gifts from them had a gift card to their store and there was also two silk hearts. One heart we kept close to us and the other heart you put inside a plexiglass box outside the entrance to the CICU. We wrote Noah's name on it. Dwayne and I both gave it lots of love and kisses, wished for healing for our son and dropped it in the box. While Noah was still in the hospital I would stop now and then to see if I could still spot his heart. A lot of times I could even though it got burried more and more due to more hearts joining the ones already there.
When we went back to the CICU for the first time since Noah passed away back in December I looked for his little heart, but I couldn't see it anymore. I really wish I had taken a picture of the box. But I must say my mind didn't think that clearly when Noah was in the hospital and there are a lot of things I wished I had done, but I didn't.
Like I said besides the little silk hearts Noah also got a gift card. We told Lucas that when Noah got discharged all four of us would go to Build a bear and Lucas should help Noah pick out a bear.
As we know, as with so many of our plans (and dreams) that included Noah, it went down the drain.

But on a cold day earlier this year, we finally went to Build a bear. We told Lucas to pick out something he thought Noah also would like and the bear was a gift from Noah. It was a bittersweet day. Noah should have been right there with us chewing on his little fingers watching his big brother with excitement.
Lucas picked out the cutest little puppy. That puppy hasn't left his side. It sleeps with him every night.


Lucas trying to make a decision. So many choices.


This is when the little puppy comes to life. Lucas is helping stuff the dog.
Afterwards Lucas was given a little red silk heart identical to the ones we got in the hospital. Lucas was told by the lady to rub it on his forehead, nose and give it a kiss and it was put inside the dog.
Afterwards he picked out a cute little hooded sweater (forgive me for not getting a final picture of the puppy.) Finally Lucas filled out Fluffy's birth certificate :-)


Fluffy is ready to come home with us.

Wednesday, March 28, 2012

A year older.

So it was my birthday again over the weekend. 34 years old. I can't believe it. I was 22 when I got married. 26 when Lucas was born. How can I already be 34?
Dwayne had been bugging me for a while what I wanted to do on my birthday. And really I don't care too much as long as I'm with my family. This was supposed to be my first birthday as a mother of two. And it was! But I was supposed to be holding BOTH my boys in my arms. Loving on them. The day before my birthday I was sad. I was missing Noah, wishing he was here with us. On my birthday he would have been 11 months old. So just the fact that he's getting closer to his first birthday don't help the matter either.
The morning of my birthday, Lucas was in our bed. He had come in in the middle of the night. I do love my snuggles with him. Sometimes I wish he would just stay in his own bed, but then I think of that in ten years he won't be coming in our bed in the middle of the bed. So I'm enjoying it.
The first thing he said after he opened his eyes were "happy birthday, mommy". Perfect way to start the day. Before I could get out of bed, I had a good little cry. Just missing Noah again. But the cry was what I needed, and the rest of the day was great.

First thing first. You got to have a great breakfast. Dwayne made some pancakes. Lucas was right there with him helping him eat them.


Like I had said to Dwayne, I just wanted to be with them. Since the weather was beautiful I really wanted to go to the zoo. The zoo was packed. We weren't the only ones who had thought of doing that. We never park in the zoo parking lot, because who am I kidding? We are very frugal. The zoo is free and parking cost. So we always park on the street. We usually have to walk a little bit. Sunday we had to walk quite a bit. But it was ok, since it was gorgeous! Lucas got to have the best view in the house - on Dwayne's shoulders.


Such a silly face.


He CAN be quite cute when he wants to be.

First thing Lucas always wants to see first are the penguins. I love them. It was perfect timing, because as we walked up the zookeeper came out to feed them. The penguins didn't want any of the fish she brought. They followed her back to the door where she got some different fish. They were all over them!



Next it was the snakes. Gotta love a rattlesnake!


Got a family picture taken too!


This picture is taken by Dwayne. He got to play with the camera a little bit. Lucas was quite impressed with this bird since we read that it can kill snakes (darn it, forgot to write the name down of it).


Finished the day off with homemade chocolate chip cookies. Yum! Thanks sweetie :-)


I really can't complain. It was a great day!

Monday, March 26, 2012

Kash's story

Meet Kash. I've never met Kash, but I feel like I know him just looking at the pictures of him and reading the beautiful story Kash's mom wrote about him.
I met Kash's mom at St. Louis Children's hospital back in September 2011 when we both went to a memorial service. At the service they were honoring Noah and Kash among other kids. Kash's mom came up to me afterwards, because after sharing Noah's story she could relate to a lot of things I had told. I'm so glad she did. I don't know if I would have. I think we have a pretty special friendship only knowing each other for a few months.
Kash was such a strong little boy, and I absolutely love that he got to experience being outside in a gorgeous garden with his parents before taking his final breath. That is something I wished we could have done with Noah. That garden on the rooftop of Children's hospital is an amazing getaway from all the machines and where you can just soak in the beautiful landscaping they have created there. I miss that place.


I can't even describe the fulfillment that was felt knowing that our beautiful son was coming. It was just the most perfect thing in our lives, so incredibly meant to be. Getting pregnant with my little boy was my rainbow after a PCOS diagnosis in early 2010. I had been so sick for so many months, then months of hormone therapies & cleaning up my on-the-go lifestyle as a busy teacher & mother to 4 already. I ate well, I took my vitamins, I monitored cycles, I laid & prayed so many nights, & then there was that perfect morning knowing I was pregnant. This baby was a key to my healing & knowing I would be okay.  I knew his name was Kash before I knew he even existed. I had defeated my PCOS diagnosis.

It was in November of 2010 that a nurse called letting me know that my Quad Screen came back positive for elevated AFP, which I was told meant my baby had neural tube defects. Total agony & devastation. I signed on with a neonatal maternal specialist from Champaign-Urbana & started months of in-depth blood panels & sonograms. Each visit only brought good news, always showing no signs of any defects, but the specialist became concerned that Kash would be too small & wanted to keep me on close monitoring for the duration of the pregnancy. We had defeated the neural tube defects scare.

On  Monday, April 11th, I made the last OB trip before my April 13th c-section. In a fifth pregnancy of nagging false-labor, it was a shock to be told I was definitely in labor for the first time ever in my life. I made calls letting everyone know Kash wanted to come & I headed to the hospital, with 3-year-old daughter Kendall in tow. At 3:15 pm Kash McKinley Barnfield was born, weighing a hefty 8lbs & 21in long, a week & a half before his April 21st due date. We defeated the low-birth weight scare.

Kash immediately showed signs of troubled breathing & was whisked away to the Level II Nursery. He was monitored through the night to watch his O2 saturation & blood gas levels. As his numbers stayed low, we began to worry. It was 5 am the next morning when I had a nurse help me up & wheel me in to see my little boy. He was so big & beautiful, & he was here, & everything that we had worried about for months seemed to be okay. They had thought that he had ingested some fluid during the section & had wet lungs. I couldn't touch him, but watched him sleeping, so jittery & breathing so hard. He was going to be flown to St. Louis Children's Hospital “just to be on the side of caution”, but that he would be right back home in a day or two.

It was Tuesday morning & they placed Kash in my arms for a few moments before he left for SLCH. He looked up at me with his beautiful, big brown eyes & he felt so good in my arms after months of worry.

My husband John went to SLCH to meet Kash & be with him, as I spent the next 24 hours getting up & on my feet after surgery. John sent picture messages & text updates. He talked about the nurses calling Kash a strong little bunny because he was so quick & jumpy & nearly tried to hop off the table. She said she had never been beat up by a baby before as he kicked & fought her, so full of strength & life. He had to be sedated & intubated for treatments, but was responding well.

I arrived Wednesday to join my strong bunny, Kash. I did not know how long I would stay at SLCH, but that I was not going to leave until my little boy was better. I met his extensive team of doctors & he was finally given his rightful diagnosis, Persistent Pulmonary Hypertension of the Newborn. It's a common & very treatable condition occurring when a baby's lung pressure does not transition to breathing in the world after being in the womb. The pressure in the lungs stays high making it difficult for oxygen to saturate the lungs & travel through the body systems. The medical team said things looked good & we had lots of ground to go if we needed, but that it wouldn't be necessary. I pointed out the blue, plush bunny that was placed in Kash's room by hospital volunteers. We would then take that bunny & place it in his arm when we left to go down the hall to sleep in the family sleep room for a few hours each night.

By Thursday morning Kash was maxed out on the drug amounts he could have & it was decided to change his ventilation system to a more aggressive machine. This machine was big & loud & shook his body violently. It was not a good match for Kash as his lungs worked hard against the monstrous machine. That night doctors told us that it was imperative that we give consent for Kash to be placed on ECMO, a system that takes the blood out of the body to oxygenate it & pump it back through the body. This would let his lungs rest & regain strength after the trials they had been put through. There were no other options. There was no way else to go.

Late Thursday night Kash came out of surgery strong & pink & resting, but most importantly his body was finally receiving the oxygen & drugs it so desperately needed. His ECMO team was awesome & his body & his stats were improving greatly. Everyone was happy & optimistic.

It was Friday afternoon when they found the bleed in his brain. We had to consent to another emergency surgery to take Kash off ECMO & then had to wait to see what the extent of the brain bleed would be. It was that night after being taken off ECMO that I was able to hold Kash for the second time. This time felt even better than the first. I had watched my baby fight as he was attached to all those machines & medicine for those days. I had cried in agony as he had undergone 2 major surgeries, praying for his safe delivery. Holding my son felt so good. I would bury my face next to his & just absorb his presence.

During the waiting we were determined to make memories with our son. We told him about his life & his home & his family of sisters & a brother. We gave him wet baths & read him books. We sang songs & encouraged him to get well. He had already gotten through so much & he was such a strong, little bunny.

By Monday morning we were told that Kash was not going to come out of this. His head was severely swollen from the accumulated blood pooling in his brain. We met for a final team meeting as many experts presented their findings & explained why Kash could not get better. It was going to be over.

But my husband John refused to let them take him that day, that Monday. It was Monday, April 18th, & that meant that it was Kash's 1-week birthday. We spent the day celebrating the only birthday we would have with our little boy. We wrote birthday wishes on his whiteboard in his room & bought a birthday card & balloon with Winnie the Pooh on it from the gift shop. A dear chaplain, Liz Berry, had been by our side during Kash's surgeries, & she joined us on our special day to baptize Kash. Her perfect words included, "A celebration of who you are, & whose you are. You belong to your mama & your daddy, but first also to God".  While I can not deny that there were a multitude of tears that day, there was also a great amount of love & happiness as we celebrated our son whom we would not be able to keep. It was especially hard to see that his autonomic muscle responses began returning after the heavy sedation had finally began leaving his body. I would hold Kash's hand & his fingers would move & his foot would raise up & go back down to rest. Signs of life in this sweet boy that would not be able to live.

We woke on Tuesday hurrying to Kash's side wanting to spend every last moment with him that was possible, knowing that at 11 am we had plans to take Kash to the outdoor garden on the 8th floor to say our goodbyes. It was on my first day at SLCH that John took me to the garden while the NICU was temporarily closed for another baby's surgery. He promised we would bring Kash there when he was stronger & doing better. Our NICU team was able to make this happen for us, though the day was forecast with storms & rain.

Right before 11, the clouds began to lift & the rain backed away. We took the elevator ride up to the roof with our little boy & his team. The garden had been closed especially for us & blankets covered a wooden bench for us. Kash's lines were removed before the trip up & the only thing left was to extubate. Kash was wrapped in a fuzzy blanket I had bought for him months before he was born & we held our son for the third & final time. We were not able to defeat PPHN. Our fight was over.

We found out months later that Kash's PPHN was too severe to recover. If the bleed had not occurred, Kash would still not have been able to recover. His lungs showed strong thickening & his heart, though normal, simply had to work too hard. There were no genetic disorders or any other condition that contributed to Kash's illness. This whole thing just was simply a worst-case scenario PPHN & nothing more.

Today we still live with Kash's memory all around us. We speak about him each day & keep him a part of our lives. My daughter Kendall “talks” to him on her Barbie phone & we tend to his resting place several times a week, just a country block from our house & across the road from the sitter. My son Alex got out of the car the other day to play a song for Kash that he had learned at school on his recorder. Kash has a memory wall that we continue to work on & that is a prominent part of our home now. A special hutch is almost finished that was designed & built just for Kash & more of his things to be displayed. I can not wait to add this to our home & have a special place for more memories.

I still do not know why all of this had to happen, but I get through each day by being lifted up in prayer by more people than I can imagine. We are preparing for a trip back to SLCH to donate hundreds of coloring books, crayons, & goodies that are all donated to honor Kash's birthday on April 11th. It is impossible to live inside that world & not have a place in your heart for the many, many kids that stay there each day.

We miss our strong bunny every single day. The NICU staff found a blue bunny identical to Kash's so that I could have one here with me, & he has his' that was with him when he was laid to rest. We are fortunate to live in the country & feel blessed each time we see a wild bunny cross our path. It's like a hello from our sweet boy & a reminder that he was real & he was here. One of the best things I can tell my husband is that I saw a bunny today. All my hugs & love with my Kash McKinley FOREVER!


Kash shortly after birth before transfer to St. Louis Children's hospital.


Kash and his mom loving on each other after coming off of ECMO.

The final goodbye (or till next time)

Tuesday, March 20, 2012

Phoebe's story

Meet precious Phoebe. Phoebe is tomorrow (3/21) two years old. But unfortunately for Phoebe's parents, she'll be celebrating it in heaven with her younger brother, Ronan.
To continue from my previous post, I don't want all those sweet babies that left earth way too soon to be forgotten. I want to honor their memories. I'm hoping I can share many, many more angel babies.
I met Phoebe's mom and later her dad at St. Louis Children's hospital when their son was Noah's next door neighbor. I consider them dear friends of mine, and I couldn't think of a better angel baby than Phoebe to start of my new project.
Phoebe's story is written beautifully by her mom. Get ready to wipe away some tears (because I did). What an amazing little girl.
Happy birthday sweet Phoebe. I hope heaven has lots of birthday cake for you.

Many, many hugs to Phoebe's mom and dad and the rest of her family who misses her terribly.


My precious daughter Phoebe Johanna was born on March 21, 2010. She was born at home, which we had planned from nearly the moment we found out we were expecting. She was apparently in quite hurry to meet us, as she didn’t even wait for the midwife to arrive! I was blessed to have my husband and close friend with me to help me through the birth.

We had a beautiful first day with her, surrounded by family who fell in love with her on sight. She was nursing like a champ and doing all the things a brand new baby should do.

When she was just over 24 hours old, she started having some difficulty breathing and we rushed her to the local emergency room, and she was airlifted from there to the nearest high-level NICU, about 2 hours away. When she arrived at the new hospital, they had trouble stabilizing her and within a few hours she was put on ECMO (extra-corporeal membrane oxygenation), a heart-lung bypass used on infants with severe respiratory distress. We were told at that time that she had PPHN, persistent pulmonary hypertension of newborns. In other words, the blood pressure in the lungs was too high, and was making her heart work too hard to push the blood through the lungs.

She responded very well to ECMO and was able to come off the bypass in less than 3 days. Thus began the roller coaster of the most difficult month we could have imagined. Phoebe would seem to respond to treatment, and then would crash. They would try a new medication, a different combination of medications, adjusting doses and timing of the medications. She was paralyzed for several days, because she was so sensitive to noise, light, changes in the room, people talking near her bedside. We spent nearly the last two weeks sitting at her bedside, in a quiet, dark room, not wanting to disturb her in any way, hoping that the rest would give her body the time it needed to heal.

And then came the worst words any parent could ever hear: “There’s nothing more we can do.” They had used every therapy they knew of for PPHN, including some never before used at that hospital. Despite every effort of her incredible medical team, she simply would not get better. We had reached the point that any more intervention, we would be doing to her, not for her.

We called our family so they could be with us when we let her go. Shortly before she passed, they removed as many of the medications, IVs, tubes and wires that they could, and for the first time in a month I got to hold my baby girl. I held her, rocked her, talked to her and loved on her until we told the doctor he could remove the respirator tube. Without the respirator support, she passed quickly and peacefully.

After Phoebe passed, we found out she had a rare lung condition called alveolar capillary dysplasia (ACD). To find out more about ACD you can go to the ACD Association’s website at Less than 200 infants worldwide have ever been diagnosed with ACD. While it did not change the outcome, a definitive diagnosis gave us some comfort. We knew without a doubt that there was nothing anyone could have done differently, nothing we or the doctors missed, no way she could have survived.

Soon we should be celebrating Phoebe’s second birthday. While time has brought some peace, it has not filled the emptiness of not having her with us.

Love you, baby girl. Always.



Two beautiful girls. Phoebe and her mom.


Sunday, March 11, 2012

What's a hero?

That is something I've been pondering about. I don't think there's just one hero. I think there's a lot of them in this world. And it upsets me when people don't realize that or they dwell on just one.

Of course we've had our own personal experience with a lot of hero's this past year. Yes, Noah was (is) of course one of them. But I realize that he's only one out of a many, many more. Noah, unfortunately, have a lot of friends in heaven. And there are many other little babies who went before them. Because really, I don't think there's more of a hero than those itty bitty babies that leaves this earth to go be in a place where there's no pain and suffering.
It's not because they give up. They just couldn't be fixed! Their little bodies were too complicated. They were fighters from day one in utero. I often think about what a miracle these babies are. It's a MIRACLE that Noah first survived nine months in my womb. He grew big and strong. And then he lived for another ten weeks outside my womb.
But now that so many babies are in heaven I HATE that they don't get the recognition they deserve.
And now I'm getting a little personal. But it breaks my heart that we (Noah's dad and me) are the only ones to keep his memory alive. If we wouldn't talk about him no one would. Yes, they might mention him, but no one is gonna post a facebook update to rave about how awesome he is. Or Noah will never get attention in the media about what a rockstar he is. Or what a hero he was! People move on with their lives. And I understand that. But us, grieving parents, who are left behind, we don't move on. A piece of our hearts will always be missing. We miss staring into those beautiful little eyes. We miss those little fingers sqeezing our finger. We miss seeing those little legs kick in the air.
What is my whole point about me writing this? It's something that has been on my mind a lot. Something that has made me shed a few tears and even kept me awake at night too.
I think about Noah, Ronan, Elizabeth, Phoebe, Nathan, Nelyn, Kash...just to name a few babies every single day. They are truly little fighters. Strong babies. Gone way too soon but never forgotten. And I'll keep talking about them so no one forgets how much they meant to us. How tough they were.
And I don't want this to come out sounding like we are not appreciative of all the prayers Noah got when he was here on earth. So many was rooting for him to get better. I almost felt like that Noah couldn't die, because we would let so many people down. I so badly wanted to be the one yelling from the top of my lungs that my baby made it. My baby is leaving the hospital and going to his real home.
But he didn't. He died. His beautiful heart stopped beating. His purpose on earth was done.

I'm just wanting you to open your eyes. Realize that there are a lot of grieving parents out there who has fought for their babies to stay with them. They fought for their right to raise them. And think about those babies. They fought even harder. Let's not forget about their legacy.

A hero is someone I look up to and admire.

And I hope I have now broken the silence. I'm honoring those sweet babies in heaven that we miss every second of every day.

We love all of you, you sweet angel babies.