Thursday, April 22, 2010

Welcome Angel Ryan's Rainbow of Hope!

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We have another very exciting new Local Project in Angel Ryan's Rainbow of Hope! Denise is the Project Leader and Angel Ryan's Rainbow of Hope who donates bags to Iowa City Children's Hospital. For more information on Angel Ryan's Rainbow of Hope, please email Denise at Here is Ryan's Story . . .

My name is Denise I have been on a journey of grief for many years now. In my efforts to help others I heal my heart and grief. You see this journey started in January 2000 when I had a very tiny baby girl named Jesse. She was only 14 weeks gestation, but she was my baby and she should be known because she was loved. She was born early in Iowa City because of a terminal defect called Anencephaly. Later in the same year I became pregnant again. I was scared I was gonna have something go wrong but as the pregnancy progressed I became more at ease. If only I knew what was in store for me. I never knew Ryan was sick until he was born in Waterloo Iowa Covenant Hospital. I think it probably was better that way in someways but in other ways I wish I had known. Soon after Ryan was born, June 23 2001, we both were transferred to Iowa City Childrens Hospital. Ryan fought but his battle was lost June 25 2001. He had just to many challenges to overcome to get the operation that would save his lil body. The hospital was awesome, they did everything possible for Ryan and to make us comfortable. Being that Ryan came kind of unexpectedly we were not prepared for this journey. I didn't have one item bought for Ryan. Since losing Jesse we became aware of what could inevitable go wrong. Ryan had no clothes to wear, no blanky, nothing. The hospital gave us some items. Ryan was buried with his clothes but I have his blanky that I cherish. The nurses also made special hand prints in plaster of Ryans hand and gave those to us which I also cherish. I have to say that they did more than they needed to but I will always remember how compassionate they were. Ryan and Jesse's memory will live on as long as I tell there story and share them with the world. I feel proud that God gave me the chance to at least be a part of there lives even though it was short and now I have 2 special angel babies to look after their mom, dad, and siblings Jayson and Justyn.
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Welcome Hailey's Hope!

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We are very excited to welcome another Local Project, Hailey's Hope to Project Sweet Peas! Hailey's Hope donates bags to the Children's Hospital of Alabama. For more information on Hailey's Hope, please contact Kristin at Here is Hailey's Story . . .

My husband and I were 24 years old and had been married for a year and half when we start our family (January 2009). At the end of March a home pregnancy test confirmed that we were pregnant. When I was 12 weeks pregnant, I had a Nuchal Translucency Screening done. This particular screening identified the baby’s risk of having a chromosomal disorder, the most common being Trisomy 21 or Down Syndrome. Even though our pregnancy had no risk associated with it, I went ahead and had the screening done. The ultrasound suggested our baby might be at risk because she had more fluid than normal behind her head. However, the bloodwork came back normal, so we were told that our baby would be just fine.

The rest of the pregnancy continued smoothly without complications. Everything looked good. We were so excited when we learned we were having a girl. We had several baby showers and decorated her room. We did everything we could to get ready for her much anticipated arrival. I felt confident that we would have a healthy baby especially because we ourselves were so young and healthy, but in the back of my mind was always the thought that there could be something wrong with Hailey.

There were no complications other than my high blood pressure (which is normal for many pregnant women) the week before Hailey was born. On December 1, 2009, when I was 39 weeks and a 3 days along, my water broke after being induced for 2 days. Hailey arrived at 6:04pm. After I delivered Hailey I waited to hear what all parents want to hear, the beautiful sound of a crying baby – and I got it. However, I knew something was wrong when she wasn’t placed on my chest, and no one was telling me what was going on. Hailey was rushed off to the NICU before I even saw her.

Eventually I learned that it appeared as though Hailey’s intestines were on the outside of her body (gastroschisis) and physically there were some other things wrong with her. They told me that she had to be flown to another hospital that had a level 3 NICU that had the capabilities of taking care of a baby like Hailey. I was able to see Hailey while waiting for the jet to arrive that was going to transport her. She had countless tubes attached to her and a huge bandage over her stomach. She clearly did not look like a ‘normal’ or ‘healthy’ baby. It hurt to see my baby like that, but despite everything, she was beautiful. When the rescue team arrived, they let me hold her before taking her. I wasn’t sure if I was ever going to have that moment with her, and I am forever thankful for that opportunity.

The next day I was discharged from the hospital and made the 5 hour drive to join my husband and daughter at The Children's Hospital. When I arrived Hailey was in the NICU recovering from the surgery she had the night before (the doctors placed her intestines back inside of her). Josh and I had many briefings by many doctors while we were there. To keep a complicated story simple, Hailey had many health issues, the most prevalent being apnea, which meant she would stop breathing. Many of the issues and several of her physical traits suggested that she might have a genetic disorder.

To determine a diagnosis for Hailey, the doctors ran a FISH (Fluorescence In Situ Hybridization) test. By the time the results came back a few days had passed. Right before Hailey was to undergo a second surgery, the doctors told us that results had come back showing that Hailey had full Trisomy 18, a lethal genetic disorder—lethal meaning that she was going to die. It was untreatable and incurable. They explained that Hailey had three copies of the 18th chromosome instead of the normal two in every single cell of her body. This prevented her body from functioning and developing correctly. The doctors didn’t know how much time she’d have with us. They explained that it could be hours, days, weeks, maybe months at best. We were in shock when we learned this... We went into one hospital to deliver our baby and expected to be at home with her at this point. Instead we were in a NICU learning our baby was going to die.

After having some time to ourselves to process the information, the nurses and doctors met with us again to discuss the next course of action for Hailey. We made the decision that the quality of Hailey’s life was more important than the quantity of days she lived. We wanted to make the most of her time here on Earth and didn’t want her attached to tubes and machines for who knows how long as that was not the kind of life we wanted her to live. Therefore, we made the difficult decision to not go through with the surgery and to stop medical interventions.
A few hours later we were moved to a private room in the hospital, and we were able to have all of our family members with us as well. We were able to hold her, give her kisses, dress her in her clothes, and I was able to work on feeding her bottles of my breast milk. She had an oxygen tube to help her breathe if she needed it, and she had an IV for fluids and nutrients until she was able to take enough of the bottle on her own. Also, she was off of morphine unless we felt like she needed it for pain. We made sure she was held every minute, and she literally was held in someone’s arms for almost a week straight.

A few days passed, and Hailey reached the many milestones she needed to so that we could take her home: she was bottle feeding well, off of her IV, having healthy diapers, and hadn’t had any more breathing attacks. After being in the hospital with Hailey for eight days, we were finally able to bring her home.

When we learned that Hailey had a lethal genetic disorder, our hearts broke, and we were in shock. Everything moved so quickly. The future for Hailey looked pretty dark. We learned more and more about Trisomy 18 by doing our own research online. We learned that Hailey’s birth was a miracle since most babies with Trisomy 18 don’t make to term or don’t survive birth. We also learned that most babies with Trisomy 18 who survive birth don’t make it out of a NICU or the hospital. The fact that Hailey was able to do so well and come home with us was a huge blessing from God.

When we were home with Hailey we had many visitors, and we made many memories with her – car rides in her car seat, a walk outside in her stroller, Birthday parties, baths, reading books to her, singing to her, dancing with her, showing her Christmas lights and the Christmas tree, etc. I made sure she smelled the smell of flowers and felt different textures. I ran her hands along my face, across our dog’s fur, across her stuffed giraffe. Her daddy wiped her chocolate birthday cake on her fingers and face. We covered her in kisses – Eskimo and butterfly included.

One week with Hailey turned to two weeks, and weeks turned to one month – what miracles and blessings from God. On her 5 week birthday Hailey got a fever (most likely a result of an infection, which the doctors explained would likely be the cause of her death). We brought her in to her pediatrician that day and she had been doing so well that I felt like it wasn’t her time yet.

Hailey remained a fighter until the very end. The next day, January 6, when Hailey was 36 days old, God decided to call her home, and He did it just as I had prayed. I had prayed that her death would not be painful or ‘ugly.’ I prayed that she would pass away peacefully in the night while she slept and that morning we woke up to find that she had passed peacefully while we were all sleeping.

Of course we were devastated to lose her, and yes I wish she had been a healthy normal baby, but she wasn’t…and that’s okay. She was created how God wanted her to be created. I never imagined that she could be as amazing as she was since she was so sick, but she was amazing and she was the best baby and daughter I could have asked for. She brought me so much joy my heart overflows, even after her death when my heart is broken and she’s not here, the memories I have of her make my heart overflow with joy. She was simply awesome.

Through Hailey's Hope, we want others to see that there are sources of light and hope even amidst the seemingly "dark" situation of a baby being in a NICU. We want Hailey's memory and life to impact others for the better and help others see that all life is precious and matters. Last but certainly not least, while being in a NICU is extremely difficult, we felt blessed and well taken care of by the workers and volunteers at The Children's Hospital; therefore, we would love nothing more than to give back to them and other families who share the experience of having a child in a NICU.
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Welcome Nimkee Blessings!

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We have a lot to update you on here at Project Sweet Peas, and this is the first of three new Local Projects at Project Sweet Peas! Nimkee Blessings donates bags to the Hospital for Sick Children in Toronto, Ontario which means that we are international! For more information on Nimkee Blessings, please contact Melissa at Here is Nimkee's Story . . .

In July 2006, I found out that I was unexpectedly expecting. I was scared, nervous, but elated and hopeful that this pregnancy would mean great things for me and my family. I embraced this new life that was growing inside of me, looking forward to our future together. I imagined what the next summer would be like with a new baby here. I pictured the next mother’s day with a little one in my arms. My boys were happy and excited….life was good.

I called my midwife and arranged to begin my prenatal journey as healthy as possible. One day she was here to draw some blood for regular prenatal tests and she asked if I would like her to draw a little bit extra to send away for a ‘maternal serum test’. I had never opted for this in the past, but this time I said, “Sure, go for it, it will give me one less thing to worry about.”

Several years ago in August of 1999, I delivered a stillborn son named Noah-Alexander. I already had 2 sons, and I went on to plan 2 more pregnancies after his birth. Each pregnancy was very nerve-wracking for obvious reasons, and every day of those subsequent pregnancies was a joy, and a struggle, and resulted in 2 more healthy sons. I told myself that lightning won’t strike twice and tried to relax and enjoy this new journey.

I remember the day that my midwife phoned to let me know she had some results for me. She stopped by to explain to me that there was a 1:8 chance of my baby having Trisomy 18. I had never heard of it. She told me it’s a chromosomal abnormality and that she had made me an appointment with a genetic counselor in the city nearly 2 hrs away. I attended that appointment and was told what Trisomy 18 is, and was offered termination, and/or a chance to have an amniocentesis performed. I opted for the amnio to find out for sure what we were possibly dealing with. I could not envision myself spending the duration of the pregnancy wondering what might happen.

I went to Toronto, nearly 8 hrs south of here, to North York General Hospital to have the amnio performed. I was frightened about the risks, but everything went fine. 3 days later I received the preliminary FISH (fluorescence in situ hybridization) test results which indicated that Trisomy 13 was detected in his cell sample. The final results came back a couple of weeks later and told me that I was expecting another son, and he did indeed have Full Trisomy 13, aka Patau Syndrome, in EVERY single cell of his entire body, meaning he had 3 copies of the 13th chromosome instead of just the 2 that he should have received—one from his father, one from myself.

More information about Trisomy 13 and Bennett-Chadlen can be found here at this site:

I chose to embrace my son’s diagnosis and give him as much love and comfort as I could during our time together. I was told that he may be premature, stillborn before Christmas, and I was very frightened as I remembered what I went through with Noah-Alexander so many years ago. This time I was prepared and decided to preplan his funeral arrangements in the event that it should occur suddenly. I wanted to be able to give him the type of service that I hadn’t been able to give to Noah. I knew that when or if it should happen, that I would be recovering from childbirth, and grieving, possibly unable to think clearly and plan as thoroughly as I would like to. I didn’t want to have any regrets.

I travelled to Toronto once again to have level II ultrasounds, and fetal echocardiograms to see if any birth defects could be detected. The doctors had noted the possibility of a non-severe Congenital Diaphragmatic Hernia. I requested to have a Fetal MRI to see what we were dealing with. He had no organs up in his chest and his lungs developed normally, which was great news! These CDH babies do require immediate intubation at birth so that they don’t cry and possibly swallow air which could cause the internal organs and intestines to swell up and make it more difficult to fit everything back in place during the surgical repair. They were unable to see clearly if there was indeed a CDH, but we prepared for that just in case.

I made arrangements to have the remainder of my prenatal appointments in Toronto at Mount Sinai Hospital, and Bennett-Chadlen would be transferred across the road and treated at the Hospital for Sick Children in Toronto, Ontario, Canada.

Bennett-Chadlen was born on March 29th, 2007, 2 days overdue. He was very alert and responsive following birth and intubation and did not require the paralyzing sedatives because he was not fighting the ventilator. When I was able to see him for the first time, I spoke his name and he turned his head to look at me. He heard me and knew I was there! It was the most amazing feeling in the world. My friend quickly snapped a photo of him looking right at me, and another one looking at her because he saw the flash of the camera. I cherish these photos more than words can express.

The surgeon came over to Mount Sinai to see him and told us the wonderful news that he appeared to be doing very well and may not require the surgical repair. He said he was transferring him to do further tests, and would be able to extubate Bennett-Chadlen if the hernia was not detected.

The next time I saw my boy later in the day, he was unresponsive and on full life-support. He fought hard and lived his life in 8 days, passing away due to unexpected complications on Good Friday, April 6th, 2007. Easter is always a period of remembrance, as well as his birth and angel dates.

We miss him very much, and are very happy that we had the chance to hold him and sing to him as he passed away in our arms, surrounded by his siblings, family, and dear friends.

We had a chance to have a prenatal photo shoot taken by photographer Heather Renee Morgan of, and she also did a photo shoot while he was in the NICU. On his final day we had a photographer come from a wonderful organization called Now I Lay Me Down To Sleep and he took photos of all of us surrounding Nimkee with unconditional love. I highly recommend that all new mothers-to-be of babies who have been prenatally diagnosed with any type of possible complication should be sure and get these photo mementos to hold onto. I have made my photos into video montages, and display Bennett-Chadlen’s keepsakes in my home so others can know he is still very real to us.

I want to be able to reach out and give love, comfort, and support to others as they to endure the difficult NICU days. It’s difficult to prepare for such an emotionally charged period, but we will strive to do our best to provide others with things that will help make the NICU experience a little more positive, comfortable and memorable.

We will also make available some Bennett Blankets and Bennett Bunnies to give as sibling gifts. My boys have these and they sleep with them every night, drifting off to sleep cuddled in their baby brother’s “hugs”.

Much love, peace, and Nimkee blessings to you and yours……Melissa & family

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Thursday, April 1, 2010

Vote for Project Sweet Pea!

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Over the next 30 days, Project Sweet Pea is in the running for a $25,000 grant from Pepsi Refresh Everything.

We need you all to vote everyday for us. It only takes a minute!

Please remember to vote everyday!!

Project Sweet Pea has been delievring smiles to families for 8 short months. We have touched the lives of 255 families! This past week alone, Donny's Shining Light and Ava's Angels have delivered 33 bags filled with items to help comfort parents.

We are so proud to work together with such awesome families. Please help us give back, by taking a minute from your day, each day until April 30th, to vote for us : )

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