Stories from our Families

My Little Angel

She never opened her eyes but I already knew her eyes sparkled like the night sky.  Sophia, born an angel, that God already needed.  Her life lasted only a few hours but changed by life forever.  Only the best die young. Sophia deserved the life that she will never be able to experience but we will life through her.  She made the biggest impact on my life even though she'll never know it.

My mom has four kids; Sophia would have been her fifth.  On the phone with her boyfriend (the father of Dante, my little brother who's 7), she expresses to him that she may be pregnant again.  She asks me, "Do you know if we have a pregnancy test?"  I said, "I'm not sure, why?" She replied, "I think I might be pregnant." After looking for a pregnancy test and realizing we didn't have one, she ran to the store to buy one.  Moments later, she took the test and came back with the news. "I'm pregnant", she said.  I didn't know how to feel at the time. I was mad because she already had four kids, upset because I felt it wasn't the time and happy because there'd be another baby on the way. I wasn't sure how my other siblings were going to take it.  Last time my mom was pregnant with Dante' and told my brother Gage(age 21), he was completely distraught and didn't know how to handle it; I didn't know what he would say or think about another baby.  After a while, everyone seemed okay with it, and excitedly awaited the baby.

I went to one of the ultrasounds with my mom to hear the heartbeat and see what the baby looked like.  Nervous and excited all at the same time, I awaited the doctor to call out my mom's name.  Finally, the doctor said, "Miechelle?" We got up and followed the doctor back to the ultrasound room.  The doctor started the ultrasound and began looking for the heartbeat.  She searched and searched for the heartbeat, I tried to comfort my mom with a reassuring smile but I felt just as nervous as her.  After some time, she finally found the heartbeat but it was dim, a bit of relief lifted off our shoulders.  The doctor said that the amniotic fluid was low and to drink plenty of fluids and get some bed rest.  My mom nodded with acceptance and in her mind I knew she felt terrified but she put on a pleasant smile and sat up.

Throughout the following months, things took a turn for the worst. My mom followed the doctor's orders and stuck to her bed rest and drank plenty of fluids.  It almost felt like my mom went to the hospital almost every other day because of her heavy bleeding.  Every time she returned home, she would say, "The doctor told me to stay on bed rest."  Days later she'd be right back in the hospital with the same problem.  We weren't sure what was quite wrong yet.  Finally, the doctor told my mom that the baby had Potter's Syndrome, a fatal disease that caused the baby to be born without kidneys or even have room to have kidneys.  Commonly the baby would have deformities to the face or to the body.  The doctor told my mom that Sophia wasn't going to make it after the birth.  If anything, the baby would survive for moments after the birth and then she'd pass away.  My mom had no idea how to take this news, crying hysterically all the time; no one knew what to say to make her feel better.

The night of the birth, my mom experienced the same heavy bleeding, so when she left for the hospital, nobody knew we'd get a call saying, "I'm in labor, come to the hospital." My mom and I both agreed that I would be in the room when Sophia was born but once we got there, the doctor told me I couldn't because of a C-Section and I had to be 18 to be in the room.  MY brother Gage went into the room with my mom, expecting the worst but praying for the best. Sitting in the waiting room, trying to keep my little brother and sister(Madison,11) calm, only made my nerves worse.  My heart began to race and I stared at the clock, bouncing my legs up and down anxiously.  Finally, Gage walked out with the saddest face on and told us to come with him.  He had tears in his eyes and I already knew what to expect.  I walked in the room hesitantly, not sure what to think of how to feel.  My mom full of tears handed Sophia to me so I could hold her.  I just looked at Sophia's face and began to cry, just knowing that her life was about to come to an end.  The most beautiful baby girl I had ever seen in my life, just lying in my arms.  After the doctor told us that she may have some deformities, I expected the worst and almost afraid to see her but she was incredibly beautiful.  She looked like every other normal baby, just a little smaller but I can't even express the true beauty I saw in her.  I only held her for a short period before I just couldn't handle the pain anymore.  I hugged my brother and we just cried hysterically.  Dante', Madison, Hasana (Gage's girlfriend), and I all walked back to the car just distraught from taking in what had just happened.  Nobody talked the whole way home because no one knew what to say.

Sophia survived longer than the doctors predicted.  She pushed through and lived for 2 hours.  I never thought that something so tiny could have such a large impact on me.  In a heartbeat, I would have traded places with her just to let her have a chance to live her life.  Sophia brought our family closer than we've ever been before.  She taught me to take nothing for granted and your family is the only thing that matters because when you're at your lowest, they're going to be there to pick you back up.

Patrick And Debra McShane Family - About Baby Mary Catherine

We talked to our kids this weekend, and they were so individual, heartbroken and sweet. Our daughter, Annie, said she thought God must have put four seeds inside of me when I was created and one was an angel seed. So I had three babies and now I would have the angel baby. That's the story I am going with from now on because it sounds just perfect to me. Our oldest, Leo, was the most emotional. He quickly went to work drawing pictures and making a paper doll for Mary. He asked me to get a picture of her with the doll. He also thought we should make a special keepsake box to put things for Mary. He made us each a card with Mary's name (spelled "Merry") on it and told us to keep it in our wallets. Then one night I was lying in my bed with Jack watching TV. He took his favorite dog (named "Dog Dog Dog") and laid it on my stomach. He said he was letting Mary Catherine snuggle with it. He's so young, but he has come through this a very thoughtful little person. These kids are amazing.

I also called to schedule the 3-D sonogram for late April. I told the kids that we would get to see some really special pictures of Mary while she's still in my tummy. They are very concerned that they may not get a chance to meet her so hopefully this will help a little.

Ultimately the kids didn’t get to meet Mary face to face as things moved so quickly with her birth. I took great joy in telling the kids how much she looked like them. It was amazing...such tiny little features, but so distinctly familiar to us.

The kids still participated actively in Mary Catherine’s life and even in planning her funeral service and they continue to talk about her.

Joy and Joya's Family

Joy and Joya were twins, very special twins. They were joined at the chest and shared one heart. After complex testing prenatally, it was determined that Joy and Joya could not be separated surgically. Neither would survive the surgery.

The twins’, their Mother Jackie, and their older sister Jaterra were deeply embraced by Alexandra’s House and its community. During phases of the pregnancy the little family lived here as our guests. Jackie reported that one night while getting ready for bed here that she and Jaterra, who was seven at the time, were chatting. Jaterra quietly asked Jackie if Alexandra’s House was Heaven.

Joy and Joya were born alive and survived seven incredible days. Literally everyone who met them fell in love with them. Even in their short lives, though quiet, they were very interactive with each other. Joya often nuzzled Joy’s face and Joy would use a hand to push her away. Soon all noted their very distinct mannerisms and saw subtle yet special differences. They were both seen as completely unique individuals. Jaterra spoke that her favorite memory was brushing their hair. That was her special job.

On the seventh day they rested. We miss them so but Alexandra’s House will always bear the fragrance of their sanctity and treasure their memory.

A few years after Joy and Joya’s deaths, Jaterra and her family were back here visiting. Jaterra lay on the floor while we al visited with Jackie. 

Prenatal Imaging

A Bonding Experience For The Whole Family

Ten fingers and ten toes - that's the first thing every parent checks on their newborn.  For the parents of Alexandra's House those simple things are not taken for granted.  I am Jeanette Burlbaw, a sonographer with 35 years of experience.  Twenty of those have been in the perinatal departments here in Kansas City.  I have been the sonographer who evaluated your baby prenatally and have been with you when you found out there was a complication with your pregnancy.  Currently I have a private office, Prenatal Imaging Centers, LLC, in south Kansas City.  I created my office in 2002 as I realized we are a visual culture.  I realized I could offer parents the opportunity to look at their babies as well as quality affordable diagnostic Sonography for the uninsured.  I also realized parents of babies with malformations have questions that in a busy clinical setting just don’t get answered during sonograms. 

 Patti came into my life when she felt a mother needed a clearer look at her babies.  She called to see if I would image conjoined twins.  She realized that parents of children with malformations often need the reassurance of sonography on their terms.  They want to see what the perinatologist looks at during each office visit without the need for the explanation of the images in 2D sonography.  The 3D sonography presents the baby in a manner that is more easily understood.  You are often allowed to see their expressions, simple little gestures and eyebrow movement that replace a multitude of words.  Fluid around your baby is very important to acquire the best images.  Some complications that limit fluid make creating those images difficult.

 I now own remarkable new equipment, the GE E8 BT12 with HDlive.   HDlive is the second generation of 3D imaging.  It provides extraordinary image clarity and exceptional anatomical realism.   You can find my new pictures on my facebook page, Prenatal Imaging.  I also have a web site, www.prenatalimaging.com.  My web site is currently being redesigned to remove my old images and incorporate my new images.

 I have been allowed to serve the families of Alexandra's House ever since Patti called me and I look forward to serving you for many years to come.

(She is too kind to include this but Jeanette offers all her services to the families of Alexandra’s House as a gift. Thank you, dear Jeanette/ AH) 

Ben And Christy Shively Family

 (These are thoughts the children wrote before Baby Ian was born)

Dear Ian,

I know you have problems and we pray for you at dinner. People have been bringing food to the house because mom can't. I love you Ian. Mom has told us all about your problems and Ian, I felt you kick. I like to give my mom's belly kisses. Can you feel them? I can't wait for you to be born.  That's all for today. Love, Olivia  

Dear Ian, 

 I am sorry for your conditions.  We are praying for you. I love you. I hope you get to meet us when you are born. If you live for a long time, Tyler would be your best bud. I love you. I'm your biggest sister. You might be going to a soccer game of mine if you are well enough. We are thinking of you a lot.  When you go up to heaven, can you tell me what it's like? I'll listen in my heart when you tell me. Look for Toby, Smokey, and Moose when you go up to heaven. They are some pretty cool dogs. That's all I have to say today.  I'll write more another time.

Love, Samantha

ps-my nickname is Sam 

Dear Ian,  

It's your sister Lucy here.  I love you. I want to give you a hug and a kiss when you are born. You will be my baby brother. I want to be with you when you are sick. And that's it now.   

Love, Lucy 

Ian’s birthday

Ian’s Day: July 7, 2010 according to Samantha (10)

“I remember going to the sonogram and looking at him on the screen.  I wasn’t sure why we were crying.  I was trying to help Lucy to understand that Ian didn’t have a heartbeat.   Later that night, I came home from an event and my Aunt Lou Lou was over.  She took us to the hospital to meet Ian.  I was able to hold him and he was baptized in my arms.  I was sad and happy because Ian was going to live a better life in heaven rather than struggling on earth.  If it weren’t for Ian, we wouldn’t know what it felt like to have someone die close to us.  I remember seeing one eye open a little bit.  He had blue eyes like me.  There was a drop of holy water on his eyelid.  Ian was really small.  Patti from Alexandra’s House was there, taking pictures.  Now we can look at those pictures. A couple weeks later, we had a Mass and a balloon launch for Ian.  There were balloons with his name on them.  After letting them go, I felt kind of sad but happy because I wrote him a note but I knew he would get the note in heaven.  We planted a tree in is honor and wrapped our palms from church on the trunk.  I like to see his tree everyday so that I am reminded that he his always with us in our hearts.  At night when I see one big star and one little star, I know it’s my baby brother and my uncle watching over us.  I sometimes wonder if he has other little friends to run around and play with up in heaven.”

Ian’s Day: July 7, 2010 according to Olivia (9)

“I remember the day Ian died.  We were watching Ian on the screen at the sonogram and then he didn’t have a heartbeat.  We were all crying because it was sad that he wasn’t alive.  We went to the hospital late at night with my Aunt so that we could hold him.  I remember holding my baby brother and wearing the scrubs like my Dad was wearing when Ian was born.  He was such a beautiful baby.  Fr. Farnan baptized Ian in my sister’s arms.  We were all around him and it was so nice.  I really liked that we lifted balloons off to him in heaven.  All of our friends and family were there.  I pray to Ian when I need his help.  I will miss him.”

Ian’s Day: July 7, 2010 according to Lucy (5)

“I remember everyone crying when we went to see him on the computer.  I was sad because Mommy was sad.  I remember holding my sweet baby brother but he wasn’t alive.  My sisters got to hold him too.  Mommy was really sleepy but she was covered up with blankets.  I like that we planted his tree because I can sit on the bench next to it and think about him.  I feel my brother hugging me when I am warm and cozy in my bed at night.  I love him.”

(Editor’s note:  Kim and John’s first born is the delightful Gabriel. We met them when their second son was diagnosed prenatally with a fatal birth defect. Zachary did not survive. Several years later they conceived a beautiful baby girl and the pregnancy was advancing normally. Unexpectedly their perfectly formed Isabella was stillborn. Recently Kim and John received a new baby into their family through adoption. He is Lucas and these are their reflections with Gabriel.)

We've been extremely busy. Lucas is very adorable and very demanding! What five month old isn't!

Anyway, Gabriel is totally in love with his new brother. The first thing Gabriel does in the morning is to kiss Lucas. He constantly wants to hold him and has even shared his "baby" toys with him.

This past March before going to bed, I told Gabriel that it was his sister Isabella's birthday. I had questioned whether to say anything or not. I wasn't sure how he would react. We talked about how old she would be now and what we thought she would like; playing dolls, dress up, etc. After the conversation it was time for bed. Gabriel was saying his prayers and said, "God, please tell Isabella I said happy birthday."

Lucas has been a blessing! He fits in our family so well. Our adoption isn't finalized yet, (another month) but it's hard for us to believe that he ever had other parents. I asked Lucas the other day if he was born for us and I got the biggest smile! That's all the answer I will ever need!

I asked Gabriel if there was anything he would like to say and he said, "I like Lucas and he likes me, and if Zachary and Isabella were here they would like me and I would like them too!" Well said!! HA!

Kim

Brooklyn Musyoki

In November of 2009, my husband Eric and I found out that we were expecting another bundle of joy. We have a son, Brennen, who at the time was approaching his 1st birthday. We were so excited about our new edition. I spent a lot of time in the doctor's office because I was constantly bleeding and no one could really tell me why. At 17 weeks I went in for a normal check up and my doctor decided to do a sonogram. During the sonogram my husband and I found that we were having a baby girl, we also found out that I had a incompetent cervix and would need to have an emergency cerclage placed to keep my cervix closed. After the surgery I was placed on bed rest for the remainder of my pregnancy. The only time I could leave the house was to go to my doctor's appointments every Monday.
 
After being on bed rest for 6 weeks, I went to my regular Monday doctor's visit and my doctor told me that my cervix was continuing to shorten and that she wanted me to admit myself into the hospital on Thursday so that they could monitor me. On Thursday March 25th I admitted myself into The University of kansas Hospital. On Friday March 26, 2010 at 8:30 a.m. my water broke and I immediately went into labor. They were not able to remove the cerclage so I had to have an emergency cesarean section. Brooklyn Mwikali Musyoki was born at 1:07 p.m., she weighed in at 1 lb 6 oz. and 12.5 inches long, I was 24 weeks and 2 days. The doctor's and nurses worked on our little angel for 20 minutes, reviving her a total of three times, my husband never left her side. It was concluded that our daughter passed away from a Pseudomonas infection.

We decided to have Brooklyn cremated and held a small memorial service for her. Every year for her birthday we have dinner and release balloons with our loved ones. She truly is a blessing. Her short presence in our lives have made us take a look at the things that are important in life. I truly believe that everything happens for a reason. God always knows best and He will never put more on us than we can bear. Brooklyn will always hold a special place in our hearts. I thank God for giving me the time that He gave me with Brooklyn and the time that He continues to give me with Brennen.

The pain of losing Brooklyn seemed overwhelming at times. Some days I didn't want to get out of bed and I struggled with really bad anxiety. I was so angry and I felt so alone. I started attending meetings at Alexandra's House about 2 months after losing Brooklyn. It took me a while to really address my feelings but when I did I felt so much better. It's such a wonderful feeling to talk to people who can relate to your feelings. Alexandra's House has played a huge role in my healing. Our faith, our  family and our friends have all been a great comfort to us and we will be forever grateful to them all.

Kinley Lundquist

We were introduced to Alexandra's House when we lost our daughter, Kinley, unexpectedly in March 2010. My pregnancy was going well and I had reached 27 weeks. I woke up on a Monday morning and realized she had not woke me in the night by kicking me. She was very active, especially at night. I went to work and noticed little to no movement, so I called my doctor and they asked me to go to the hospital for monitoring. They monitored her heartbeat for an hour, it was good and strong, but I still wasn't feeling her move. They sent me home and agreed to do a follow-up ultrasound the next day. When we went in for the ultrasound, there was no heartbeat. I felt as if my whole world crashed down around me. I went in to be induced that evening and we had Kinley at 9:58am on March 24th. She was beautiful, looking just like her big brother. I attend the monthly unexpected loss group at Alexandra's House and find it so helpful. It's so encouraging to be surrounded by other parents that know how I'm feeling.

Addison Paige

My husband and I found out that I was pregnant on August 8, 2008.  We were excited, although a bit reserved since I had suffered an early miscarriage three months prior.  My OB was wonderful and basically held my hand in terms of doing what it took to calm my nerves.  We hit the 12-week mark and decided to tell friends and family that we were expecting, thinking that we were out of the woods for anything to go wrong.  We found out that we were having a daughter and prepared for her arrival accordingly. We went to several Baby “101” courses at the hospital to better prepare us for parenthood. We also picked out a name, Addison Paige Clabaugh, which we were waiting to reveal to everyone after her arrival, a decision that I regret.  I had a textbook pregnancy with no indication (that I was aware of) of any potential issues that could put my baby in danger.  I was so excited for her arrival and looking very forward to the baby shower that my family was throwing for me.  Little did I know that the day of that baby shower, March 7, 2009, would be the day that I would be going into the hospital to start the process of inducing labor and delivering my lifeless baby girl. 

I remember waking up the morning of Friday, March 6, 2009, having not awoken that night by the usual punches and kicks of Addison.  I really didn’t think much of it because she was extremely hyperactive the day before.  I just chalked it up to her being tired, not knowing at the time that babies have a very scheduled sleep cycle in the womb.  I also remember feeling different that morning in terms of how I was carrying her.  My stomach was a bit harder than usual and had a heavy feeling …kind of a weighed down feeling.  I brushed it off and went to work that morning in a chipper mood thinking that my birthday would be in three months and by then Addison would be here with us.   I went to work and ate my breakfast thinking that would get her moving, but when that didn’t do the trick, I decided to call my OB even though I felt like a burden for doing so.  Let me preface this by saying that I had been in to see my OB for a routine weekly OB visit that Monday and I was seen the day before because I was leaking fluid.  They wanted to rule out amniotic fluid, so they worked me in.  I didn’t see my regular OB that day and often wondered if things would have turned out differently had I gone to the satellite office to see her instead.  I have since stopped playing the what-if game just because I knew that nothing good would come from it. The nurse said to head to L&D right away so they could do an NST to reassure me that everything was ok.  I honestly had no idea that something was wrong.  To make a long story short, I went to L&D only to find out that our daughter had returned to heaven.  I was alone at the time (with the exception of the nurse) thinking that there was no need to call my husband as I would be in and out and there was no need to worry him (another decision that I regret).  March 6, 2009, was the day that has forever changed my life, my way of thinking and who I am right down to the core of my soul.  

Addison was born March 9, 2009.  She was perfect and beautiful.  She had died as a result of a nuchal cord accident.  I had never heard of this happening and certainly was never made aware that it could happen to me, nor of the extreme importance of kick counts and/or any unusual behavior, such as hyperactivity or frequent hiccups, as being an indicator of a potential cord issue.  There isn’t a day that goes by where I don’t think of her and miss her. But, I know she is sitting in the lap of God surrounded by angels and Joy and that along with the fact that I will one day get to see her again brings me peace.

Addison’s little brother, Evan Bryce Clabaugh, was born into this world 14 months later.  He was and is healthy, although a failed Bio Physical Profile bumped him up on schedule for a cesarean section that day.  He was born with the cord around his neck and his leg, though not tightly I am told.  Regardless, something was wrong to result in a failed BPP, and I believe it had everything to do with the cord.  After Addison’s passing, I did a lot of research on stillbirth, including flying to see a stillborn research specialist, Dr. Jason Collins, when I was 28 weeks along in my pregnancy with Evan.  I knew that I had to be Evan’s advocate and help ensure his well being (to the best of my ability).  My wonderful OB (the same that delivered Addi), a perinate and Dr. Collins were all very much involved in monitoring Evan. Their help, along with the support of my family, my friends (the few that truly understood), other angel moms, my church and my faith are what got me through the very long nine months of extreme paranoia, fear and sleepless nights. I was a statistic and nothing that anybody said could have made me feel better.

Evan is the light of my life, and I can’t imagine life without him.  I know now what a miracle it is for any baby to arrive into this world safe and sound.  I thank God for Evan and believe that he is a gift and a blessing.  Evan’s arrival, God’s grace, and time have helped heal my heart to the best of its ability.  I have met several angel moms on my journey and we continue to share, vent and lean on one another for support and continue adapting to what we call our new reality.  We are part of the dreaded club that nobody wants to be associated with, and we are desperate to help ourselves, our families, and others who have experienced and potentially could experience the loss of a baby.  We want to be heard and understood.  We want to make certain that our babies’ deaths were not in vain and carry out their legacy by sharing what we know and not holding it within like a dirty secret.  In my opinion, sharing is a key component of the healing process.  To anyone who has lost a baby, I give my deepest condolences.  To anyone still struggling from this, please know that happiness does return to your life.  I look back at what I call the darkest days of mine and recall how hopeless I felt and how grim I perceived the future to be.  I never believed that I would have the strength and courage to get to where I am now in life.  Stay strong by leaning on your faith, your family and your friends to help you through those dark days.

To commemorate my daughter and give purpose to her life, I initiated discussions with St. Joseph Hospital (since that is where both Addison and Evan were born) about starting an annual perinatal bereavement ceremony.  I feel it is so important for moms to connect with other moms as a way of coping and healing and feel like this ceremony provides an opportunity to do that in addition to acknowledging our angel babies.  With the help of other angel moms, we have created a Facebook page called The Angel Baby Project which is another great resource for moms, dads, grandparents, siblings, aunts, uncles and anyone who has experienced infant loss.  I am excited to announce that The Angel Baby Project of Greater KC along with St. Joseph and St. Mary’s Medical Centers will host the first annual Perinatal Bereavement Ceremony in April 2012 on the St. Joseph campus.  Please follow The Angel Baby Project on Facebook to learn more about upcoming event details at:   http://www.facebook.com/TheAngelBabiesProject

While Alexandra's House is located in the heart of America, it has served people around the world. Do not let location hinder you in seeking our help. It is always our privilege to serve.

phone number: 816-931-ALEX (2539)