Pieces from The Mighty

Tuesday, December 31, 2013

A Year Of Healing

It feels like I just sat down to write my year end blog for the year 2012, and now here I am sitting down to write it for 2013.

This year has flown by, and it has been an amazing year. We started out the year 2013 with Ellie at home with us. She had only been home about 2 weeks, was on oxygen and monitors all of the time. Although she was home with us, our fears were not gone. We were still concerned about her brain bleed, ROP, her chronic lung disease, and her small size.

Over the course of the year some of our fears were eliminated.

Ellie came off of oxygen at 4 months old! That was a huge relief for us, and I still vividly remember the fear that I had when we first took her off! We were given a pulse ox machine to monitor Ellie’s oxygen numbers, and to be completely honest, we still have it! There are still times that I check her oxygen levels to make sure she is breathing at 100 percent! I also keep it around so that when she does get sick (and I do know that she eventually will), we will not have to go into the emergency room to have her oxygen numbers checked.
Next up, Ellie was able to come off of her monitors much more quickly than we had originally thought. She stayed on her apnea monitor at night for several months after we quit day time usage, mainly to ease my own fears.

Ellie’s brain bleed resolved itself! Although it was considered a minor brain bleed as far as brain bleeds go, it was still a huge relief to hear that it was gone! We had a brain ultrasound at the end of April where they confirmed that her brain looked great!

Ellie’s ROP also resolved itself! Her eyes crossed for quite a while, but the eye doctor assured us that it is completely normal for newborn babies to have crossed eyes from time to time. I remember working really hard with Ellie on tracking things with her eyes. We tried to find different toys that would catch her interest, but in the end, the thing that helped Ellie with her tracking…was the dogs. I was so worried back then about her eyes, but now, I am reminded daily of how well her eyes work. Ellie has a knack for finding the smallest speck of anything on the floor, reaches down and picks it up!

Ellie has come so far developmentally this year, from rolling over to sitting up, to pulling up, to standing, and now taking a few unassisted steps! She is doing so well, and I am proud of each and every accomplishment that she makes- from mastering using her pinchers to taking her first steps. Each accomplishment is a victory. I know that she is not right on track developmentally as far as the October babies go, but that is okay. Ellie seems to be hitting her milestones somewhere between the October babies and the January babies- which is amazing! She is doing more than they expected her to do, and for this I am thankful.

Ellie’s weight is something that I do not stress out over anymore. For the first year of her life I kept a food journal. Everything she ate was written down and tracked. When she turned one, I finally pitched the food journal, and we have been sailing through ever since. Ellie is still slightly small for her age, but she was going to be small even if she had been full term.

I feel that this year I have come a long way in my “grief journey.” I have recently taken a step that I wasn't sure I would ever be able to take…I bought something that was boy specific, and then a few weeks later I did it again. The first gift that I purchased that was boy specific was for my Uncle and his wife, as they recently found out that they are expecting a little boy, and the second one was for a dear friend’s little boy’s first birthday. This was difficult for me because the last things I bought that were for a boy I purchased for Robby on the day before I went into labor with him, and then after he died, I had to pack them all away in storage containers. I have also recently realized that I am having more good days than bad days.There is not a single day that goes by that I do not think about my son, but instead of having days where all I want to do is cry, I can smile at his memory. I also know that not everyone can see what big steps I have taken forward, but the people who really know me, know that the steps that I have made this year are huge. I still miss my son every single day, but as the days go by I am also able to find ways to cope with my grief, and I am thankful for the people who have stood by me during this time. I know that at times some of the people around me have had a difficult time understanding my grief, and I do not expect those who have not lost a child to completely understand what I am going through, but it means so much to me when I have friends and family members who do their best to be supportive and understanding. Thank you to my friends who have recently been pregnant, for understanding when I am not an active “clicker” and “commenter” on their facebook pages. It is still difficult for me to see pregnancy and new baby related things, especially baby boys. This is something that I am working on, and I really do appreciate all of my friends for giving me time to find ways to cope. Also, I want to thank the loss community, because you ladies have been a pillar of strength for me. You help me to realize that the things that I am feeling are normal, and that is a huge comfort to me. A good friend once said that losing a child isn't a single event- it is a lifetime of loss. When you lose a child, you lose all of the hopes and dreams that you had for them, and you spend the rest of your life wondering who that child would have been. I am proud of myself for the steps that I have taken this year.

This year I had to say goodbye to my dog of ten years, Barbie. Barbie was a rescue dog, and therefore, she required some extra love and care. She was extremely special to me, which made it an especially difficult decision for me to make, but when I am sad about it, I just remember that she led a full life and happy life here with us and that I did not want her to suffer any longer.

I have some big plans for the year 2014!

First, a dear friend of mine has inspired me to start a year of scripture memorization. She blogged about doing it (Click Here), and on the same day that I read her blog, I came across a list that my great-grandmother (Delphine, Ellie’s namesake) made years ago of scriptures that were special to her. I took this as a sign and I am going to memorize two of her favorite scripture verses every month. I am really excited to start this scripture memorization, and if there is anyone else out there who would like to join in with us, please let me know. I used to do a lot of scripture memorization, and I am positive that it helped me in my walk with God.  Memorizing scripture will help to strengthen me in times of stress and comfort me.

Secondly, this year I want to find something to do in Robby’s honor. Whether it is planting a tree or donating to a hospital or cause close to my heart, I want to actually do something this year. I am still trying to decide what I am going to do, but I do know that we will be doing something.

Thirdly, Tanner and I are moving forward with our gestational carrier plans. My doctor has contacted our local fertility clinic on my behalf, and hopefully the beginning of 2014 I will have an appointment to discuss doing an egg retrieval. We would appreciate prayers as we begin this journey. One big concern right now is that I am not sure how my health will factor into the egg retrieval process, but it is our hope that it is something that is achievable for us. After the consultation appointment we will begin the process of finding a gestational carrier and we would certainly appreciate prayers for this part of the process as well. I am still having a difficult time coming to terms with the fact that I will not be carrying anymore children, but I think this is something that will just take some time.

Fourth, I am going to continue to enjoy Ellie each and every day. Good days, bad days, teething days, grumpy days, sweet days, and ornery days- all of them will be enjoyed. Ellie is a miracle and a blessing, and I am so thankful that I have the opportunity to watch her grow, learn, and change.

These past two years have been intense years for us. From losing Robby, to having Ellie prematurely and all of the stuff that came along with her extremely early birth, to being in isolation during flu and RSV season last year and now being in isolation again for the second year. Thank you so much to our friends and family who have stood by us through it all. We have had some difficult times, but for those who stuck with us, we have had some really great times as well.

 I can proudly say that it has been a wonderful year, and I am looking forward to what 2014 has in store for us!

Thursday, December 19, 2013

Loving Ellie: One Year At Home

One year ago today my dream actually came true: We were finally able to bring Ellie home!

After 64 days of watching her lay in an isolette hooked up to monitors and cords. 

After 64 days of watching and staring at her monitors like it was our job or like we could change anything on the monitors. 

After 64 days of praying. 

After 64 days of waiting. 

On day 65 our moment finally arrived. The day that we had all been waiting for- Ellie’s homecoming day!

I can still remember the excitement that we felt when my mom and I typed up our final update for Ellie's facebook page from the hospital. I tear up every time I read the last sentence:

“We have done it prayer warriors- victory! Ellie IS our TAKE HOME BABY!”

When Ellie was finally able to come home with us is when I truly started to feel like a real parent. When you are a NICU parent, you have to let other people take care of your child for you, from the minute that they are born. In the middle of the night, if I wanted to know how Ellie was doing, I had to call and let someone that most of the time I didn’t even know, tell me how my baby was doing. Although all of the nurses were very well trained and knew what they were doing, it did not make it any easier to leave my baby with them. Instead of waking up every three hours all night long to feed and rock Ellie, I was awake every 3 hours to pump her milk and call to check on her. 

We were on the hospital’s schedule, for a reason of course, but even though there was a reason, it is difficult for a parent to have someone else tell them when they can hold, change, and feed their baby. Somebody was always watching us, and always critiquing us. However, when we came home, the only person who dictated our schedule was Ellie…as it should be! 

Once Ellie was home, I would wake up every three hours and instead of calling into the nurse's station and pumping, I was able to pick up Ellie, feed her, and rock her back to sleep. That was the most amazing feeling! I think that being in the NICU made us appreciate all of the little things just a little bit more. Something as simple as picking up my baby when she was crying brought happy tears to my eyes because I was finally able to comfort her. 

Sometimes I sit at my computer and go back through all of the updates that my mom wrote for the Loving Ellie group and the pictures that we posted for our prayer warriors and wonder how in the world we made it through everything. 

When I sit and think about Ellie’s NICU journey I cry, because the emotions are still so raw. I can still smell the NICU, hear the beeping of the monitors and hear the song that played while I was on the phone each time I called to check on my baby. Then when I pull myself back into what is going on now I see a happy, vibrant, active, 14 month old, and I remember that as difficult as it was to go through the NICU, we are so very lucky that she is alive and healthy!

At 14 months old and weighing in right at 18 pounds, 8 ounces, we are starting to really see Ellie’s personality blossom. She is tough, strong willed, and resilient. She is very loving and will openly give lots of kisses! She has an ornery streak a mile wide, is very busy, and loves to climb on and touch everything!  I think that these qualities are what helped her make it in the NICU. When she was admitted to the NICU, nurses told us over and over that a baby’s personality is one of the strongest determinations in how they are going to do. Ellie had a strong will to live. She was and still is a fighter. Last year she was fighting to make it home, and this year she is fighting to win the “I’m going to drop my sippy up over my high chair onto the floor and you ARE going to pick it up for me” game!

How quickly the last 65 days went as opposed to last year. Last year the days seemed to drag on. Day after day we did the same thing. We sat by Ellie’s isolette from early morning until late at night and watched her-wondering if and when we were going to be able to take her home. This year, we spend our days playing with Ellie, watching her learn new things (like taking her first steps!!), and watching her personality bloom. She is constantly changing and growing, and I cannot say enough how thankful I am that she has the opportunity to grow up.

As exciting and as much relief as it was to bring her home, the fear that we had (and even still do have) weighed us down. While we were packing up our bags to leave the hospital last December 19, four nurses and one nurse practitioner came in to see us at different times. While they were there, they pretty much all said the same things:

She really shouldn’t be going home yet.

She is too small, so she is at risk for failure to thrive which would put her back in the hospital on a feeding tube.

She WILL be back this RSV season.

When she does come back, she will end up on a ventilator.

Don’t pass her around for others to hold- limit this to immediate family.

They scared the you-know-what out of us. Before they came into the room I was feeling extremely confident in taking Ellie home. Flu and RSV season was starting to get bad, and I was ready to get her out of the hospital. I believed Dr. Hsaio and knew that she was going to have a better chance of staying well at home.

Well, after the nurses came into visit, I started to panic. I kept a hospital bag packed until March, because I just knew that we would be back for one reason or another. I was told that she would most likely go back to the hospital for failure to thrive, or RSV.  I know that each and every single one of those nurses meant well, and were only saying what they did so that we would be extremely careful. I would imagine they see many micro preemie babies go and then return. Though said with well meaning- they scared us! I am STILL terrified of Ellie getting sick. I know that one of these days it IS going to happen, but I dread the day that it does. 

 When we took Ellie home she was so small and sick, but we didn’t see it then like we see it now as we go back through pictures. At the time we were comparing her to the 1 pound 12 ounce baby she was at birth. As I look back through the pictures from when she came home to now, I think I am finally starting to realize how small and sick she really was. I did not notice it then. My mom and I would actually say, “Wow, she looks like a normal baby here!” However, looking back at those exact same pictures now, I can see it. We are able to see now what others (the nurses) were seeing then.

I’ve said it before several times, but I’m going to say it once again, Thank you so much to all of the people out there who have been praying for, cheering on, and loving Ellie. Not only did you pray for her during her hospital stay, but so many of you continue to pray for Ellie now. You cheer her on when she hits a milestone, and send prayers for doctor’s appointments. You are a constant and amazing support system for me, Tanner, Ellie, and our entire family. Thank you for continuing to follow Ellie’s journey even though she is no longer in the hospital. I fully believe that Ellie is destined for greatness, and I know that God and every single one of her prayer warriors is to thank for that.

I also want to thank everyone at Wesley hospital who helped us get out of there at 65 days. If it wasn’t for all of the wonderful nurses, respiratory therapists, nurse practitioners, doctors, and office staff, I do not think that we would have made it out of there when we did. We should have been in the hospital at least another 30 days, but thanks to all of the people at Wesley, we were able to go home sooner. A special thank you to Dr. Hsaio, as he is the one who truly believed in Ellie. He believed that she would be fine going home…as he told us…Ellie is “kick ass!”

 For anyone who is wondering what special thing we did for Ellie today on her one year homecoming: We let her eat her dinner in playland and wearing only a diaper! She was a very happy baby!

I am so thankful for this past year. I am so thankful to have Ellie home with us, and to be able to watch her grow and learn. I think a lot of times we take the little things for granted, but I remind myself every morning to take nothing for granted. I savor every diaper change, screaming fit, snuggle, 5 am. wake up call, sleepless night, and bad teething day. Ellie has taught us so much. She helped us to appreciate the small things in life, helped us to practice patience, given us hope, and demonstrated the power of prayer. She is a true miracle and blessing.

Monday, October 14, 2013

What A Difference A Year Makes: Happy Birthday Ellie!

Last night as I rocked my sweet little girl for the last time before she turned one, I thought about all that she has been through this past year, and how far she has come. 

One year ago I was terrified for her. I was scared that she wouldn’t ever come home with us. 
Through her first seven weeks I was scared. I was scared that she was going to die. It took the doctors and nurses 49 days before they were able to tell me that she would in fact be okay and would eventually go home with us. 

When I was in the hospital contracting on October 15, 2012, Dr. Hsaio came to introduce himself and tell us a little bit about what would happen if I were to deliver Ellie that night. He stood there and talked about all of the things that could potentially go wrong with Ellie. The picture that he painted for us was very grim, and I know that he had to do that to prepare us for what could happen. 1 in 10 premature babies develop a permanent disability. He said that she is at a very high risk for a severe brain bleed, cerebral palsy, blindness, deafness, Chronic Lung Disease and so many other things. This is what I was told just an hour before they wheeled me back into emergency surgery to deliver Ellie.

49 days. 

It was the scariest 49 days of my life. For those 49 days we sat by Ellie's isolette and stared at it. There were a lot of days we weren’t even able to open up the curtain that covered the isolette to look at Ellie other than at diaper change time. It all depended on the day and how she was doing. So, if it was a day that we needed to let her rest in quiet and darkness then we just sat and looked at the isolette and prayed. 

During those 49 days we watched her struggle to breathe. She was what they called a “swinger” which means her oxygen would jump from high to low back up to high. We would watch her numbers and listen to the bells and whistles go off when her oxygen was too low. The nurses would sit close by so that they were able to easily adjust the oxygen up or down depending on how she was doing. 

Since she required so much oxygen, I was unable to hold her for the first several weeks. To be able to get her out to hold, her oxygen needed to get below 30. Each night when I went home I would call several times throughout the night and the early morning to check on Ellie. The two questions I would always ask were: "What is her oxygen at?" and "Has she had any bradys?" 

One morning when we got to the hospital, the nurse asked me why I always asked what her oxygen was. I then told her that I hadn’t been “allowed” to hold Ellie in a couple weeks due to her oxygen number being so high, so it is a big deal to me. It was like although she knew the protocol on oxygen, it hadn’t occurred to her that I hadn’t been “allowed” to hold my baby in weeks. 

One night at my 3:00 am call to the hospital the respiratory therapist that was on duty that night got on the phone to talk to me and sounded ecstatic because they were able to get her down to 28% oxygen for a few minutes. She knew how desperately I wanted to hold my baby and so she wanted me to know that they were working hard at getting her oxygen low enough for that to happen.

Ellie was in the hospital for a total of 65 days, and at the time those days went by so slowly. It seemed as if the day was never going to come that she would be our “take home baby.” 
After 65 long days of being in the hospital, we finally got to bring her home, and since then, the time has gone by so very quickly. 

The thing that I learned from Robby’s death was to cherish every single moment. We only had two hours with him, and so I have spent every single moment of this last year with Ellie thanking God that we have longer with her. 

This past year I have tried my hardest to savor every single moment with Ellie. Each tear, each and every middle of the night feeding, the spitting up, and even each teething poop, I have savored because we will not ever get this back.

Ellie has made it through so much this past year. She overcame having pneumonia, her ROP has resolved, her brain bleed resolved, and she stopped needing oxygen at 4 months old. 
In her admittance papers to Wesley, the nurse wrote down that she looked: “Quiet, depressed, and floppy.” One year later, she is Loud, happy, and we can’t get her to sit still! 

When looking at her today, the only signs still visible from being a micro preemie are the scar on her chest where her CVC was placed, the scars on her heels from the dozens of heel pricks she endured, and two tiny spots on her head where hair does not grow due to the tape from the ventilator. 

The one thing she has not yet overcome is her Chronic Lung Disease. Her lungs are still very fragile. Sometimes it is hard to remember that they are still so fragile, because she looks like a completely healthy baby. If she gets sick this year it will not be quite as bad as it would have been if she had gotten sick last year because she is bigger now- her lungs have grown. However, it will still be difficult for Ellie because of the Chronic Lung Disease and that is why the doctors, nurses, and respiratory therapists at the hospital recommended being extra cautious with Ellie during her first two RSV seasons. Although Chronic Lung Disease can be, and is, very serious, we are thankful that this is her only lasting condition from being a micro preemie at 1 pound 12 ounces at birth.

I cannot even begin to express how thankful I am for all of the support that we have had this past year. All of the prayers have been deeply and sincerely appreciated. I truly believe that it was all of those prayers that got Ellie and us through her NICU stay. 

I have recently gone back through each and every one of the updates that my mom made on the Loving Ellie page. It is absolutely amazing to go back through and see all of the comments, love and concern from everyone, and it just brought me to tears. Thank you so much to everyone who has been “Loving Ellie” this past year. We are so lucky to have such amazing family and friends. 

On the night that Ellie was born, I was scared, and I didn’t know what was in store for us, but tonight- one year later- I am not scared, but thankful. Thankful that despite the rough start Ellie had to her first year of life, that she is now healthy, happy, and thriving. In the past couple of weeks several people have asked me if I am sad that she is about to turn one, and I always respond that her birthday is nothing to be sad about. Ellie’s birthday is something to celebrate and praise God for. I tell them that you should never be sad that your baby is growing up, be glad that they have to opportunity TO grow up.

Ellie’s first 65 days of life was scary. I remember the night that I was discharged from the hospital, my mom and I stayed even though we did not have anywhere to sleep other than hard chairs. We carried everything we needed with us in backpacks. I remember asking her that night how we would make it through. She told me “I don’t know, but we will figure it out, and we will get through this.” 

"You'll get through this. It won't be painless. It won't be quick. But God will use this mess for good. In the meantime don't be foolish or naive. But don't despair. With God's help you will get through this." *Max Luccado 

Happy 1st Birthday Princess. Although your first year started out rough, you were a strong little fighter and have made it though. We have made it through with the help of God, family, friends, and many prayers. We are all stronger because of it. You bring us happiness and joy every single day. It brings me so much joy to be able to watch you grow and learn new things. You are beautiful and perfect, and you have been since the night you were born. You truly are our shining rainbow of hope, and I love you so very much.

Thursday, April 11, 2013

In Ellie's Honor

Every day thousands of babies are born too soon. When babies are born too early they are often very sick and some don't make it.

Last year I gave birth to two babies-one in February and one in October. Both Robby and Ellie were born prematurely at 23 and 26 weeks respectively. Unfortunately Robby did not survive. He lived for two hours before he died because his lungs were too immature and therefore he was unable to breathe.

After Robby was born I was told that I had gone into premature labor. My big question was "why?", but unfortunately nobody could give me the answer to that question, not even our Maternal Fetal Medicine specialist here in town. I was told to try to get pregnant again because “there was no reason why it should have happened."
Well, it happened again when Ellie was born at 26 weeks 3 days gestation.  Luckily, I made it far enough with Ellie, that she not only survived, but she is thriving.

Each year, the March of Dimes hosts the Walk for Babies in different cities around the United States.  The one here in Wichita was April 6, but because Ellie has chronic lung disease and the walk was scheduled at the tail end of RSV season, we decided it would be best for us to pass walking this year. I look forward to the day that our family can walk together in honor of Ellie, and in memory of Robby.

A fellow January mom, Amanda Pansey, is walking in honor of Ellie in her hometown. I met Amanda through an online support group for women who were due in January. She is a part of Ellie’s facebook group (Loving Ellie) and has been watching her grow. I feel so very blessed to have so many people like Amanda that have taken such an interest in Ellie and have been praying daily for her health! We are so very lucky to have people that were total strangers to us just months ago participate in events like this for Ellie! Thank you Amanda Pansey for walking for Ellie!

A donation to the March of Dimes goes to research that could help determine the causes of premature labor as well as things that doctor’s can do to prevent or stop preterm labor from happening and things that can be done after a baby is born prematurely to help improve their quality of life.

Right now there are several studies being funded by the March of Dimes that are near to my heart.

In a research study being help at Duke University, Richard Lambert Auten, MD is looking for ways to help prevent premature babies from having BPD, or as it is often referred to- Chronic Lung Disease.  They are looking for ways to better deliver nitric oxide to the lungs of babies who are likely to get Chronic Lung Disease. Chronic Lung Disease happens when a baby has to be on oxygen support for longer than 28 days of life. Since Ellie was on oxygen until she was 4 months old, she has chronic lung disease. What this means is that her lungs are weaker than the “normal” lungs, and because of this if she gets sick, she will get sicker than most babies, and have a harder time recovering.  Ellie’s Chronic Lung Disease is the reason why we have been in isolation this winter. So very few people have been able to meet our sweet little miracle, because this is RSV season, and if Ellie were to get RSV, it is likely  she would end up back in the hospital and possibly on a ventilator.

At the University of Nevada, Iain L. Buxton, is studying variant versions of a protein structure in uterine muscle cells to see if any of these variants are linked with preterm labor. These structures appear to help keep the uterus relaxed during pregnancy. If women who are at risk for premature labor can be identified early, then steps can be made to help prevent premature labor.

Stephen Lye, is holding a research study at the Mount Sinai Hospital, University of Toronto Canada, that is looking into how inflammatory proteins (cytokines) produced by the uterus can contribute to triggering preterm labor.  Cytokines are the first step in the onset of autoimmune diseases. With an autoimmune disease, the body attacks its own cells. Since this study is being done on cytokines and cytokines are the first step in the onset of autoimmune diseases, it is my hope that in some way this study will help link autoimmune diseases to premature labor. I truly believe that my autoimmune issues (fibromyalgia and rheumatoid arthritis) contributed to my premature labor.

All of the studies above are examples of why I support March of Dimes. They are funding research studies that could help prevent premature labor. Although I doubt we will have any concrete answers in time for me to carry anymore children, it is my hope that Ellie’s generation will benefit from this research that we are helping to fund by supporting people like Amanda Pansey and the walk for the March of Dimes.

Click here to donate to Amanda Pansey's Walk for Babies

Sunday, February 24, 2013

Happy Birthday Robby

One year ago today I gave birth to the most beautiful, perfect little boy, Robert James Smith.

After Robby was born I struggled with all of the “what ifs”, but the time when the "what ifs"  were the worst was when we were in the NICU with Ellie.

When I was pregnant with Ellie I knew that I could not and would not go to the same hospital that I had Robby at. I researched the local hospitals and found that Wesley Medical Center by far had the best NICU.  The way Wesley's  NICU is set up, everything is very open so you hear and see most everything going on. Nearly every single day of Ellie’s NICU stay we heard at least one story about a 23 weeker ( most of the time boys) who they (the doctors and staff at Wesley) were able to save.  The people who told us these stories most of the time had no idea that just 8 months prior I had given birth to a 23 weeker who did not make it. I know they thought that they were giving us stories of hope since Ellie was a 26 weeker. One doctor told me that 16 years ago in the exact same spot that Ellie was in (Team 1, Bed 8) , a 23 week boy’s isolette had been and now he is  a happy, healthy young man who had very recently been back to visit the doctors in the NICU.

Stories like those were hard for me to swallow, and inevitably these stories pulled me back into “what if  land", but the day that I almost broke was the day that a 23 week girl was admitted to our team- right across the way from Ellie.  What made it even worse was that when I went to wash my hands one day and I glanced over at her name tag, I saw that this little girl weighed exactly what Robby weighed- 1 pound, 4 ounces. I spent the next several days by Ellie’s isolette crying, and feeling guilty.

I felt guilty because I couldn't stop the “what ifs” from going through my head:

What if I had researched the local hospitals when I was pregnant with Robby?

What if we had been at Wesley when he was born?

If we had gone to Wesley instead of St. Teresa's they might have been able to save him!

Then I  felt guilty for thinking these things because if Robby were here, we wouldn’t have Ellie.

Then one day a very kind, but very blunt respiratory therapist, Deb, leveled with me. She told me that on average the 23 weekers don’t do well and some of the ones that we were hearing about that did do well possibly had their dates off and/or weren't true 23 weekers. If they were true 23 weekers, the stories that  I kept hearing were probably about babies that were 23 weeks, 6 days, where as Robby was born the day I hit 23 weeks. Each day at that gestation makes a world of difference- the difference between life and death.

She kept reassuring me that the 23 weekers that she sees in the NICU are older 23 weekers or their dates were off, so the baby is more developed than an average 23 weeker would be. She went into all of the problems that the 23 weekers can have. She even went so far as to tell me that with a 23 week boy a lot of the time you sit by the bedside and watch your baby die- a little at a time. After we told her our story she told us that she truly believes that the hospital we were at did the right thing by not saving him.

I believe that God placed us in that NICU with Deb for a reason. If it weren’t for Deb, I would most likely still be spending my days in “what if” land,” because of all of the stories I heard while we were in the NICU. She pulled me into reality, and assured me that the hospital did the right thing. Being in the NICU forced me into dealing with all of the “what if” questions that I had.

I still have some momentary lapses back into “what if land,” but one year later, a NICU stay later, a very blunt respiratory therapist later, a miracle little girl we call Ellie later, and I finally feel as if I am coming to terms with Robby’s death.

There will always be a place in my heart for Robby, however I don’t want to be one of those people who spend their whole life dwelling on what could have been. There is a fine line between remembering and dwelling. Today I want to remember Robby, but not dwell on the fact that he isn’t here. I don’t want to be stuck in the past.  I need to keep moving forward with his memory in my heart. I miss him so much, and I wish that he could be here, but that is not my reality. If I spend all of my time and energy wondering “what if” and dwelling, then I would miss out on what is right here- our little miracle baby, Ellie. Ellie is getting so many extra kisses, hugs, rocks, and cuddles because we were only able to cuddle Robby for 2 short hours before he was gone.

Here is a sweet message that I got from Brittany as she remembers Robby today. 

"Hey Amanda- I hope that you are doing ok. 1 year ago today we were all hoping that Robby wouldn't be born this early but he was! We miss him sooooooooo much! But I am also happy that Ellie is here and is as healthy as she is and getting bigger and bigger each day! Robby knows how much we love him even though we (Brooke, Brittany, Courtney, and Abby) didn't actually get to meet him! He would be so happy to meet his stylin sister Ellie if he was here!   Miss u guys! Love~aunt Bri Bri"

Today I don’t want to spend my day mourning Robby, but instead celebrating him, because his memory deserves to be celebrated.  Today I want to remember the good times we had when I was pregnant with him and planning our life with him- the times that made us smile. Today and every February 24 we will celebrate Robby Day and we will be happy for our little boy who is watching over us and his little sister from heaven.

In honor of Robby Day I want to share some of my favorite pictures and memories of the time I was pregnant with him. 

 Other than my parents and brother, the girls were the first ones to know our little secret! My plan was to wait awhile before telling them, but I just couldn't keep it to myself! I got them all gifts with a different baby item in each...Abby was the first one to figure out what it meant!

One of my favorite quotes from Brittany:

" You mean you were TRYING and you didn't even tell us?!?!"

After our first sonogram appointment on November 11, we announced our pregnancy to facebook with this announcement! It took us about 25 different tries in the photobooth to get it perfect!

This picture is from our NT scan at 12 weeks. The four girls went to this appointment with us so that they could see the baby. The tech was not happy that they came with us to such a "serious appointment," but looking back now I am so glad that they went, because that was the only time they were able to see Robby.

This was taken the day we went to Oklahoma City to find out if we were having a boy or a girl. Up until that morning I knew we were going to have a girl, but when I woke up that morning, I just knew that we were going to have a little boy.

The four girls came over that night to find out what the gender was. I made up a scavenger hunt game for them. They ran all around the house finding clues that led them to four balloons, and in the balloons were pieces of paper that would tell them boy or girl.

They were all so excited!

This is the day that I felt Robby move for the first time- Super Bowl Sunday!

I had so much fun picking out Robby's nursery theme! I love Dr. Seuss and I was having so much fun putting his room together.

This was my very last bump picture. I was really starting to show and I loved showing off my beautiful Robby bump.

"The love of a parent is not contingent upon the amount of time we had with our child. Love simply cannot be measured in time."

~ JoanneCacciatore