Wednesday, May 8, 2013

Mother's Day

Mother's Day should be a joyous day to celebrate the blessings of being a mother, your children.  But if you have a baby in the NICU on Mother's Day it could be a difficult day. It could be a day of joy mixed with grief and/or sadness.  I didn't have a baby in the NICU on any Mother's Day but I was in the ante-partum unit on strict bed rest while I was pregnant with my son, Luke.  It was a difficult day for me.  I wanted to celebrate being a mom, out having breakfast with my family, going to the park, etc.  My husband and son, Matt did bring me flowers and a card  to the hospital and spent the day with me, but it just wasn't the same.  I knew that my baby boy was going to be born too soon and he wasn't going to have an easy road ahead of him, if he made it at all.  I was so happy to have been blessed with my son, Matt and to be expecting my new son, Luke, but I was also grieving what could have been, already grieving the loss of a healthy baby.  It was not any easy day.

As I sat this week watching children nap, thinking about the things that project NICU could do to support families, wishing we had enough blanket to deliver before Mother's Day.  Thinking about Mother's Day also made me think about what is was like being a mom in the NICU.  I rarely got to change a diaper for Matt in the beginning.  The nurses usually got that privilege.I never changed Megan's diaper (she had a colostomy and catheter). And, yes, I said privilege!  It's something non-NICU parents take for granted.  I read just today about a NICU mom that got to change her first poopy diaper.  Her three month old daughter had an ostomy until just last week.  That mom was so excited to change a poopy diaper!  Matt had a feeding tube the first 3 weeks or more of his life.  I didn't get to sit and cuddle while he took a bottle.  Preemie babies can be very easily over stimulated and for a while you can only hold your baby for a few minutes at a time.  Really, you just feel like you are not a mommy yet.

 So I decided that we should and could do something special for NICU moms.  It doesn't have to be anything big, just a simple recognition of their motherhood.  I decided that we would send Mother's Day cards to each NICU mommy with a $5 Starbucks gift card.  I just want them to know that they are not alone, they are valued as a mom.  Truly, that's what every mom wants, right? 

Want to donate $5 for a Starbuck's gift card for Mother's Day? Make your donation at www.gofundme.com/projectnicu and comment "Mother's Day"

Thursday, April 18, 2013

A Dose of Joy is a Spiritual Cure

"If you do a good job for others, you heal yourself at the same time, because a dose of joy is a spiritual cure."  ~Dietrich Bonhoeffer

I'm a giver.  I love to give in any way I can, be it financially, kind acts, word, etc. It brings me joy!

 There are so many great causes to support.  I have family members and friends that have battled and are battling cancer, diabetes has affected my family deeply, I've been touched by autism, and down syndrome.  I've been a foster parent and have great concern and care for the children in the system.  I love the work that Emergency Infant Services does and support them in many ways.  So, why did I choose to start project NICU?  I'm not helping find a cure for any illness, feeding the needy, or funding research. 

Because God gave me the NICU journey, not once, not twice, but three times.  Not because I was strong, not because I could handle it better than another.  But because I was tender, I was open.  I would use my experiences to help others. He gave me a testimony.  He gave me a great love and passion for itty bitty babies and their families. He gave me an understanding that cannot be grasped unless you've travel that road.   I didn't know it at the time, but I know God had a purpose.

 I came across the above quote and it's exactly how I feel about this project!  The only cure this project is aiding is healing of the heart and spirit. Not just the heart's of those lives we touch, but mine and yours. Those of us who give our time, money, prayers get a good dose of joy, a spiritual cure.  There's no great cure!

Wednesday, April 10, 2013

Random thoughts

I've been following a couple of NICU babies on facebook and I can't get either of them out of my mind, praying for them often throughout the day.  If you'd like to read their stories visit

www.facebook.com/TeamEmileigh

https://www.facebook.com/pages/Camdons-Fight/531397116885359

I also have another little guy on my mind.  One of our project NICU supporters has a son that has spent a lot of time in the hospital and needs lots of prayers.  I was honored to send him a blanket this week and I hope he and his family are comforted and encouraged by all the love and prayer that went into that little blanket!

I've finished three blankets this week.  Wish my camera was working so I could post some pictures. My sewing has improved a great deal.  The blanket I finished yesterday turned out nearly perfect!  I'm pretty proud! 

Now if we can just get some volunteers!  As much as I love sewing these blankets, I just can't seem to find enough time sew as much as I'd like.  I'd really like to get 40-50 blankets into the hands of NICU families every month, but I can't do it alone, I've realized. Some days I think I may have bitten off more than I can chew! But I know as the word spreads about project NICU the right people will hear and great things will happen!  I believe! 

For those that have volunteered and donated money, I cannot thank you enough!  Please keep sharing about project NICU!

This week we have six $20 gas cards going to St. Francis NICU.  Those cards will be given to families living out of town that need help with gas money to be able to visit their babies.  I cannot imagine not being able to see my baby because I couldn't afford the gas for travel! 

I saw this on facebook yesterday and loved it so much!  I think this is true for NICU families!

Friday, April 5, 2013

Just a Blanket

 How can a simple blanket make a difference in a persons life as they experience the devastation of a premature and/or very sick baby in intensive care?  It's just a blanket.  Right?

As a former NICU parent both having experienced a successful NICU journey and neonatal loss, I can say it is not just a blanket. It's a symbol of hope, encouragement, love, and comfort.  The blankets we received for our two babies we lost where the only things to touch our babies skin besides wire, tubes, needles, and doctors and nurses, before they passed away.  They are treasured momentos that would be devastating to me if lost.  They are nearly all I have left to remind me of my child that once was.  For my son that survived, thrived and is now 14, the momentos we received during our journey are still treasured and will be passed on to him someday.  The are reminders that we were not alone in our journey, reminders that there are loving, caring people around us.

I've heard from other NICU parents how a small gift like a blanket impacted their journey also.  I've seen NICU parents smile and get excited when they receive a special delivery for their baby from a complete stranger.  It means something.  So much more than just a blanket!

Here are a few comments I've received from other NICU parents about the gifts they received while in the NICU. (Not necessarily gifts from project NICU, but gifts in general)

*My son was born at 32 weeks and in the wonderful NICU at St John he received two blankets and a hat and it was the neatest keepsake I have! It meant so much that someone spent their time to make it for him!

*  My son although considered a full term baby was 3 weeks early and we spent a week in the nicu at St. Fran. He'll soon be driving but I still have the little crochet cap that someone made him while he was there.

*the nurses decorated his crib with homemade pillow cases that I still have and will always treasure as they were a symbol of normalcy in his tiny crib full of tubes and wires. God bless you for giving other families the comfort that I was afforded with those pillow cases

It's not just a blanket.......

14 hours, 7 mins

14 hours, 7 minutes.  That's how long my son, Luke, survived in the NICU.  It was a miracle he was born alive at all!  What was his purpose in life? What can a tiny human being accomplish in just 14 hours and 7 minutes?


This story is probably less about my NICU experience and more about how I learned what a hero a doctor can be even if he can't save a life and the legacy a tiny little guy can leave for his family!

 On April 3, 2008 I was 20 weeks pregnant when my water broke. We went straight to labor and delivery where I was told that my baby boy could be born at any time and that there was nothing that could be done to save him before 24 weeks. 24 weeks is considered the point of viability. (Although, I have read many amazing stories of survival at 23 weeks). I was sent home on strict bedrest to wait and see. I went to the doctor every few days for an ultrasound to see how the amniotic fluid levels were and to check on the baby. I basically just kept loosing fluid but baby seemed to be doing well. On April 30th at 24 weeks, I was miraculously still pregnant and was admitted into the hospital so that if my little boy decided to come into the world, the nurses and doctors could take immediate actions to try to save my baby boy's life. For 3 more weeks I remained on bed rest in the hospital. In the early morning hours on May 18, I began to have contractions and was sent to labor and delivery where they tried to stop contractions to no avail. I was in labor! I was sent to emergency surgery for a C-section just before 3pm. At 3:26pm Lucas James was born at 27 weeks, weighing 2lbs and 13 1/2 inches long. I remember thinking that if we could just get to 2lbs, everything would be okay. Again, I only got a glimpse of my little warrior baby before he was whisked away to NICU. Once he was stable, Dr. Michael Lenhart came to talk to us about our son's condition. Because he went so long without enough amniotic fluid his lungs were not able to develop properly. He would never be able to run and play like most kids because he would never have enough lung capacity. He was a very sick baby, but we had so much hope. We had made it so far since my water broke 7 weeks earlier. My husband Jim and my son, Matthew (10 yrs at the time) went to see Luke, but they couldn't go in because we didn't have a copy of Matt's immunization record on hand. ( I understand why they do this, but still, I was not happy about it!) They stood outside the NICU looking through the glass watching this tiny little boy giving the nurses a run for their money. He was letting them know how unhappy he was to be in an oxygen tent, tethered to tubes and wires!  He was fighting a good fight!  Matt told me he thought his baby brother was gonna be in trouble because the was punching the tent. LOL! And again because I had a C-section I couldn't go immediately to see my baby. Late that evening, I still didn't even have a picture to hold on to. Fortunately, my dear friend, Jessica Brown, went down to get pics for me. That would have to do til I could see him for myself. Around 3:30 in the morning on May 19, I was preparing to go see my son for the first time, when a nurse from the NICU told me that we needed to come to NICU right away, they didn't think my son would make it through the night. My heart dropped to the pit of my stomach. How could we possibly go through this again? I called Jim. He had taken Matt home to get some sleep. I went straight to the NICU. When I got there, there was Dr. Lenhart and, I think, 3 nurses working intensely around my tiny little fighter. One nurse came over to me and told me my husband needed to come immediately because they didn't think they could keep him alive much longer. (Jim and Matt were on their way) She told me they would have called sooner, but Dr. Lenhart had spent nearly 3 hours doing all that he could to keep my son alive. I could see it in Dr. Lenhart's face. He had truly given all that he had  but it wasn't enough. The pain on his face was almost worse than the pain I had in my heart. At that moment he was my hero, he wanted my son to live and he was heartbroken that he couldn't make it happen. I knew without a doubt, he had done everything that could be done and I appreciated that more than I could ever express. Jim and Matt finally arrived right about 5 am. We were taken to a private room to be alone with Luke, to hold him without wires and tubes, tell him good bye. 14 hours and 7 minutes after he was born my little Luke, my little warrior, went to be with Jesus. He was perfect, had his daddy's nose, his mommy's eyes and his brother's long legs. I was so heartbroken,
 
I started counseling to learn to cope with this loss. I remember the therapist asking me what I thought Luke's life purpose was. At the time I could only feel the pain what purpose could such a short life have? It took almost 2 years for me to be able to see that God had used Luke's life to put me where he needed me to be to fulfill His purpose. I am so thankful for the time I had with my son and miss him terribly, he is one of the driving forces behind Project NICU. Also I want to mention that the following week after we were home, in the mail came a note from Dr. Lenhart and attached was Luke's birth announcement from the Tulsa World. I hadn't even thought about clipping it from the paper. The fact that Dr. Lenhart took the time to do that, meant the world to me. Thank you, Dr. Lenhart! You are a hero and so is my son, Luke! 

A little update!

How I wish I was better at this blogging thing!  I need more hours in the day.  Between my family, my job (home child care provider to 7 small children), sewing and keeping up with facebook, there's not much time for too much else.  So today, as I sit here with my laptop, watching my little ones playing with blocks and asking me to look at their towers, I'm going to try to update on the progress of Project NICU.  I'm hoping to post a few entries today, we'll see!

On March 19, Project NICU delivered our first 40 blankets to St. Francis hospital. It was an exciting day for me, personally!  I talked with the NICU social worker about how project NICU got started and shared ideas as to help support and encourage NICU families.  I learned that a huge need is gas cards for families that live outside of Tulsa and are not able to stay at the Ronald McDonald house due to having jobs and other children at home or other reasons.  I was so fortunate that I live 2 miles from the hospital and could be there in minutes at any given time and never had to worry about how much money it would cost for gas to be able to see my baby. I honestly cannot image not being able to be there every day.   Unfortunately this is the reality for some families with a baby in the NICU.  As much as they want to be with their baby, they simply cannot afford the added expense of gasoline to travel to see their baby that is say 50 miles or more away from home.  Project NICU will now start raising funds and accepting donations for gas cards.  Any parent that wants to be with their baby, should be able to be with their baby!  It is crucial for a family to bond and a baby just does so much better when a parent is there with them!

My niece, Kim Patterson, has graciously volunteer to organize a fundraising event, Bunco for Blankets! It will be held at my house and we hope to have 24 people join us for a fun night of bunco and yummy desserts to support a good cause!  If you are in the Tulsa or surrounding area and you would like to join us, please visit https://www.facebook.com/events/299153950212453/ for more info and to join!

We had an amazingly wonderful donation of $205, from the Sanders family.  They celebrated their beautiful, sweet daughter's birthday in March and in lieu of gifts they collected donations for project NICU!  I am so blessed to have this family in my life and honored to have them support project NICU!

We had to cancel our Saturday Sew Day for March.  Everyone was just too busy with the Easter holiday, myself included!  Another Saturday Sew Day is scheduled for April 20th! We desperately need sewing volunteers! But even if you can't sew there are many other jobs to do!  For more information about April's Saturday Sew Day visit https://www.facebook.com/events/159283410900673/

Project NICU is honored to be featured in the Springtime Online Vendor Event on Facebook, created by Kim Sanders!  There are several fabulous venders with amazing products being featured.  Check it out here https://www.facebook.com/events/598044883560505/

And just yesterday, my most favorite man in the world offered to donate $5 for every new "like" we got on facebook, up to $200 dollars and when I checked fb first thing this morning we had not only reached our goal of 40 new "likes" but surpassed the goal!  I think he thought we might get 5 or 10 new likes but a deal is a deal!  Cha Ching!

I also set up a fundraising page for project NICU through GoFundMe.  If you are interested in making a donation to support project NICU's efforts to provide blankets, hats, gas cards, etc to NICU families please visit www.gofundme.com/projectnicu.  It's easy and secure!

I think that is all of the new happenings for now! 

Thursday, March 7, 2013

The First 29 days of Project NICU

29 days ago Project NICU was created with a single vision to provide blankets to babies in Tulsa NICUs. I had no idea that I would get so much support! I figured I'd get a few likes from close family and friends but we are now nearing 90 LIKES! We have collected $235 in cash donations (aside from my own personal cash "donations") and several yards of fabric. Jordan and Tia helped with Saturday Sew Day! In 29 days we have over 40 blankets complete. We've had people volunteer to donate blankets and hats, write cards, deliver blankets, etc. I'm seriously overwhelmed by the generosity, encouragement and support from all, especially my sweet husband! He's never really asked about how much I've spent on my little project (he's probably afraid to ask), hasn't complained that I spend all my free time sewing blankets and have fabric stored all over the house! He believes in this project as much as I do.

I'm also really excited about the possibility of expanding our efforts to include Pediatric Intensive Care Unit (PICU) patients. I was contacted by one of our supporters that had a baby in PICU and passed away at 3 months old. She would like to honor her daughter by working with project NICU to give support to families facing the overwhelming challenge of having a child in intensive care. I look forward to working with her!

We can now accept donations via Paypal at the following link:





We are also working to create a fundraising event, BUNCO for Blankets in April to help raise funds for Project NICU so that we can continue to provide love and support through our small gifts of handmade items, cards, care packages and what ever else we can come up with the encourage these families!

Another way I have decided to help raise money is to sell my blankets on Ebay. I just posted two today. Here's the link if you are interested in purchasing.   http://www.ebay.com/itm/281074856161?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649 and http://www.ebay.com/itm/281074848874?ssPageName=STRK:MESELX:IT&_trksid=p3984.m1555.l2649 Hopefully, I will be able to make more blankets to sell soon, but we've got a lot more blankest to make for NICU babies and that's my focus right now!

Not sure if there's anything else I need to share, but if so I'm sure it'll come to me just as I crawl into bed tonight!

Again, thanks to all of you that have liked our page on facebook; donated time, money or fabric; or took the time to read this blog! I cannot do this project alone and I am so grateful for each of you! ~Amie~

Monday, February 25, 2013

My First NICU Experience- Megan & Matt's story

My story: (well, one of them) I'll do my best to tell this story as cohesively as possible. Seriously my memories flood my mind like tidal waves. It's been so long that I think I may have forgotten a lot of medical details but the emotions are as fresh as they were 14 years ago!

I knew that my twins would more than likely come early as I'd had a very difficult and complicated pregnancy. Everyday we'd pray for just one more day because each day meant that my babies were bigger and stronger and would have a shorter stay in the NICU. On Sept. 12, 1998 I was 32 weeks pregnant and my water broke in the wee hours of the morning. It was time to go to the hospital, ready or not. One of my babies could not be born vaginally due to her omphalocele (birth defect of the abdominal wall) so an emergency C-section was in order. The operating room was full of doctors and nurses; my doctor and nurse, and a team for each of the babies. At 9:18am my daughter, Megan Mariah, was delivered, I heard a cry and she was whisked away by the NICU team. I barely got a glance of her. Three minutes later, my son, Matthew Vernon came into the world. He cried and the nurse took a moment to put that precious baby up to my face before he was also rushed to NICU. Matthew weighed in at 4 lb, 11 oz and was 17 inches long. Megan weighted 4 lb, 5 oz and was 14 1/2 inches long. After getting to my room from recovery I learned that I would not be able to see my babies for 24 hours because of my C-section. I was devastated! I needed to see my babies and they needed their mommy! To make matters even worse, the omphalocele was much worse than the doctors had thought it would be. Megan was diagnosed with OEIS complex.(We knew at 16 weeks that our baby would be born with a defect) My poor husband had to receive the new of our baby's serious condition on his own. It was so difficult to process all the information we were getting not just for one baby but two. Megan could not breathe on her own and was on a ventilator. Matthew was mostly healthy, he needed some oxygen support, had to learn to suck and gain weight. He did spent about 24 hours on a respirator but that's pretty good for a 32 weeker! I spent 4 days in the hospital. On the day my husband drove me out of that hospital parking lot, I just lost it. I cried huge sobs from the depths of my soul. Not leaving that hospital with my babies was one of the hardest things I ever had to do.

Megan had her first surgery at 5 days old to attempt to put her bowels and liver back into her abdomen and a protective covering was placed over the organs that couldn't fit just yet. Megan also had an imperforate anus and had to have a colostomy And that was the first day we were able to hold Matthew. Yes! 5 days without being able to hold my baby was excruitating! That day was so exhausting. We were so worried about our baby in surgery (I can't even how long the surgery lasted, but it was several hours) and at the same time we were so excited about our baby that was doing well. One minute you feel joy and the next minute you feel guilty for feeling that joy when you have a baby that is so critically ill. Matthew continued to have ups and downs. That's very typical of preemies. One day you see progress, the next day is two steps backwards. Megan had her 2nd surgery at 17 days old to "stuff" the remainder of organs back into her abdomen that didn't fit at the previous surgery and to have a skin graft to cover the opening in her abdominal wall. Within a couple of days her conditions rapidly deteriorated. She got an infection and became septic, her organs began shutting down and at 23 days old our precious baby went home, not to our home here on earth, but to our heavenly home. At the same time our Matthew was improving each day. He just had to learn to eat better. He would burn more calories trying to feed than he would get from nursing. Once we decided to bottle feed him he began to gain weight and thrive! I was so disappointed that I was not able to nurse him but it got to the point that I just needed to get my son home!
You begin to feel like you will never get to take that baby home. You feel so alone, even though there are many nurses, doctors and other families there with there own little ones. It seems like you live in a bubble inside the NICU walls, you lose all contact with the outside world. Really, you wonder how the world could possibly continue about it's business when you are experiencing such a difficult time. But the world does go on. Thankfully there were so many people, family, friends and complete strangers praying for us, encouraging us to hold on to hope and faith. One day I walked in to the NICU and inside each of my babies' isolette there were little stuffed animals that someone had delivered for them. We were told about the ladies that knitted the hats for our babies to keep their little heads from loosing too much heat. Cards were delivered, special tokens and momentos. These things helped keep us going, especially on those days that just seemed like we would never survive this experience. This is why this project means so much to me. I could go on and on about our ups, downs, emotions and how we coped. I'm sure I will continue to share about this experience as I remember other details and other memories.

Matt finally went home at 5 1/2 weeks old weighing 6 lbs. After a week at home, he gained a whole pound! He did go home with a apnea monitor since he would still have some apnea episodes and bradycardia (slow heart beat) on rare occasions. He stayed on the monitor for 6 months without incident. Well, the monitor would go off and scare us to death but that was because the wires would come off. Matthew did suffer from respiratory problems through his first two years of life but he is now 14 years old, nearly 6 feet tall and perfectly healthy!

Saturday, February 23, 2013

Welcome to Project NICU

My name is Amie and this is my very first blog so bear with me. A little about me......I am married to an amazing man. He's my rock, my go to guy! We've been married for almost 19 years and it's been quite a ride! We have a handsome, smart, talented, 14 yr old son, Matt, and a beautiful, sassy, energetic, 2 1/2 yr old daughter here on earth and two precious babies in heaven. I own and operate a home child care. I am passionate about the important things in my life, I wear my heart on my sleeve, I love to shop, and wish I had an extra day in the week between Saturday and Sunday(don't we all!). I love chocolate, coffee, and wine (all in moderation of course!)I have been blessed to have some pretty amazing people in my life in good times and bad! Well, enough about me and on to how Project NICU came to be.

 I recently discovered that I love to sew. I started sewing clothing for my two year old daughter, but she already refuses to wear hand made clothes. Even though she loves dresses and skirts, and I've made her some really cute ones, she just won't wear them. Seriously, she's quite the diva. So, a few weeks ago, I made a baby blanket as a gift for a friend that is expecting any day now. The blanket turned out so cute and mom to be loved it! She loved it so much that she told me I should start selling so that got me to thinking!. Although it would be nice to make a little extra money, I decided I wanted to do something with my new found "talent" (I use the term liberally, I'm no Martha Stewart) that was meaningful to me, represented something important to me, and allowed me to give in a way that was meaningful to others. Making blankets made me think about my own babies who were NICU babies, how traumatic those experiences were and how I could use these beautiful blankets (well, I think they are beautiful)to touch the lives of families experiencing the NICU.

 And there it was.....the birth of Project NICU.

 Ideas started flooding my brain like tidal waves! I started calling all the hospitals to see how many babies each currently had in their NICU's. One hospital had a staggering 34 babies, another had 40 some odd beds but couldn't tell me exactly how many were occupied on that day. Wow! That's a lot of blankets! I couldn't wait to get started. Rushed right out to buy fabric to start sewing my blankets for these precious little babies. I quickly realized there was no way I could afford to make enough blankets for even one hospital, let alone all the hospitals in Tulsa! One blanket costs almost $20 to make unless you get the fabric super cheap which I didn't for the first few. So, I decided to share my idea with friends and family on facebook. I created a Page and shared it on my personal page and immediately started getting "Likes" and people asking how they could help. I was blown away! I really thought I'd get a few likes, you know, from my mom and maybe a couple friends.

 Currently we have 81 likes and several people volunteering to help sew, write notes of encouragement, make deliveries, buy fabric, or make cash donations among other things. I'm totally excited about this project! I'd love to see it grow into something HUGE, but even if we just get blankets to one hospital, to let those families know they are not alone, to make a difference for even one day, then so be it! But I believe together we can do something HUGE! Please share this blog and visit www.facebook.com/project NICU I'd like to thank my wonderful friend, Jordan Sanders, for her support with project NICU and for setting up this blog! I am so thankful God put you in my life!