Pieces from The Mighty

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

Monday, February 4, 2013

Amanda's Life For $800, Alex!

 Since starting Ellie’s facebook page, a lot of people have been welcomed into our lives as we share every detail about Ellie's health, daily life, and medical care and treatments. Many of these people have become very dear to our hearts and we truly appreciate how much they care about Ellie. I made a list of the questions that I get asked frequently (whether in person, facebook message, or email) so that you can all know and understand a little bit more about me.

How are you doing emotionally? I am so thankful for Ellie. I know that with her being born at 26 weeks, so many things could have gone wrong during her NICU stay, and we could have been there much longer. Having Ellie here doesn’t make the pain of losing Robby any less, but she is certainly the bright spot in my life. It is hard to be sad when I look at her sweet little face every day. Robby’s angelversary (the day he went to heaven) is quickly approaching, which has been difficult for me.

Why don't you drive? I don’t drive because I lack feeling in my hands a lot of the time due to my neuropathy. I remember the last day I drove because when I went to park my car, I wasn’t able to get my car out of gear.  It took me several minutes and a lot of pain to accomplish this small task.  On that same trip I was unable to turn the steering wheel at the intersection where I needed to turn. It was frightening going through a light when I should have turned. I ended up detouring to get to my destination. At that point I knew that it was not safe for me to continue driving. When I was about 16 I started having trouble with my hands, but instead of just admitting that I was having a problem with my hands I just passed off me not driving very much to the fact that I didn’t care to drive. I didn’t want anyone to know about my hand problems, but as I got older the weakness in my hands just got worse and the point came when it was time to give up driving and admit to everyone why I didn’t drive. Someday when I am able to get on medicine I would love to be able to drive again!

How are you and Tanner doing? Tanner and I are doing good. We have been through a lot in our relationship, and this is just another chapter in our story. It has been very hard being away from him for so long, but we do not want to put Ellie at risk of getting sick. Since Tanner works in retail he is exposed to all kinds of junk during RSV and flu season. We have to be extra careful with Ellie because of her Chronic Lung Disease, so even though I hate being away from Tanner, for now it is what is best for Ellie.

Are you going to homeschool Ellie since you were homeschooled? Yes, the plan is for me to homeschool Ellie. I loved being homeschooled- it was a wonderful experience for me, and I can’t wait to homeschool Ellie!

How is your c-section recovery going? Recovery from my c-section was actually very easy.  I was sore for a few days, but since I am used to being in pain most of the time, it really did not seem that bad. My doctor doesn’t use staples, so that was very helpful.  The only time my incision hurt really bad was when I laughed, and when you have a baby in the NICU, laughs are few and far between, so it really wasn’t too bad!

 When are going to finish college? I am a senior and very close to graduating with my Elementary Education degree, but the classes that I have left all require me to do a lot of time in the Elementary schools. This wouldn’t be a big deal for most mothers of typical newborns, but since Ellie has Chronic Lung Disease I have to be extra careful. If I decide to finish my Elementary Education degree I will wait until Ellie is at least two years old to go back into the schools. Recently I have been thinking about just finishing up with a Liberal Arts degree so that I can be finished. I can always go back later to student teach which would allow me to get my Education degree.

Why do you live with your parents? When Tanner and I got married my health was very poor. I was in a wheelchair most of the time, and I needed help doing simple things such as showering, fixing my hair, and getting dressed. I am not on any medication right now due to the fact that when we got married we planned to start trying to get pregnant right away and the medication out there for Rheumatoid Arthritis and Fibromyalgia is not safe for pregnant/breastfeeding women. We basically have half of my parent’s house which gives us plenty of room. We have three bedrooms, a bathroom, living room, a kitchen and a dinette area. Now that Ellie is here I doubt (even if we could) that they would let us leave anytime soon because they love being able to see her everyday and they are so in love with their granddaughter!  I am thankful that we have the option to live with my parents as the extra help is needed and greatly appreciated!

Are you going to have any more children? Our plan before we lost Robby was to have several children very close together, but after we lost Robby our plan changed to several children all spread out. Well, now we have to re-think that plan. Because of my health issues and the two preterm births, we are leaning towards me not carrying another child. However, we do want more children.

Have you thought about adoption?  Tanner and I have seriously considered adoption. It is something that I wanted to do even before I realized that I might not be able to carry another child to term. We have also looked into a gestational carrier. The difference between a surrogate and a gestational carrier is that the baby that she would be carrying would be genetically mine and Tanner’s child.  It is mine and Tanner’s prayer that if this is the road for us to take that God will put someone in our life that is willing to carry a child for us.

Why did you get pregnant so soon after losing Robby? I got asked this question a lot while Ellie was in the NICU. When many of the nurses figured out that I had Robby in February 2012, prematurely, they questioned why I got pregnant so soon. Some people are genuinely curious, but others made me feel as if Ellie’s premature birth was my fault because I got pregnant so soon after having him. This did quite a job on my emotions right after delivery.  I had several meltdowns due to this question and the judgment I received. There were times that they had me convinced that it truly was my fault, but I just had to be reminded by my mom that Dr. O’Hara gave me the a-ok.  Right after giving birth to Robby I went to go see an MFM, Dr. O’Hara, who told me that (after running several tests) there was no reason for us to wait to get pregnant. Her reasoning was that Robby wasn’t considered viable at his 23 week gestation, (viability is 24 weeks) so we didn’t have to follow the normal guidelines. She believed that getting pregnant would be best for my mental health. So, I got pregnant so soon because an expert told me that it was okay. Tanner and I wanted to try again as soon as possible, and we did.

Will your fibro, arthritis, neuropathy ever go away? No, they won’t ever go away. Hopefully once I am done breastfeeding I will be able to find a medication that will help to ease my pain. Since all of my health issues are chronic, so they don’t go away. With the fibromyalgia I did go into remission when I was pregnant with Robby and it stayed in remission until 16 days after having Ellie. I am so thankful for that time that I was free of the fibromyalgia!

Is Ellie's room done yet? No, her room is still not done!  I have a few projects that I am still working on, but we are getting close! Ellie's room is the room we had put together for Robby and I didn't re-do it at all during my pregnancy with Ellie so there was plenty to do! It would be much easier to finish her room if I were able to get out and shop, but since I am unable to get out it is taking much longer than I would like it too! As soon as it is done, I will post pictures.

Is it hard being stuck at home all the time? Yes, it is hard being stuck at home. I would love to be able to get out and do my own grocery shopping, buy stuff for Ellie, eat a meal at Texas Roadhouse or even just take a stroll around Target while drinking some Starbucks. However, I know that this is what is best for Ellie. If I were to go to the grocery store then I am exposing myself to all kind of germs, and since I have a weak immune system, the chances of me getting sick and bringing something home to Ellie would be very high. I am so thankful that she is home, and if staying home from January through April is what is best for her, then that is what I will do!

Did you go into pre term labor because you are too small or maybe you didn't gain enough weight? This question always makes me laugh. If you turn on MTV and watch an episode or two of Teen Mom or 16 and Pregnant, you will see girls who are much smaller than me, and they manage to have full term babies. Neither of my high risk doctors were concerned with my weight at all. When I questioned if my lack of weight gain was an issue, Dr. O'Hara told me that the most important time to gain is in your third trimester. Well, I didn’t ever make it that far!

What would you have done differently in your pregnancy if you could go back? While I was pregnant with Ellie I refused to buy anything for her and I wouldn’t work on her nursery. If I would have had a crystal ball and knew for certain that Ellie would come home, I would have done things differently. I would have gone shopping for her so that when she arrived she could have had tons of clothes, tu-tu’s, and hair bows! I also would have gotten her nursery all ready for  her. I was so terrified of losing her and having to pack her stuff up like we had to do with Robby that I just didn't buy a thing.

Is Delphine a family name? Yes, Ellie is named after her great-great-grandmother. My great-grandmother and I were very close. We shared a birthday, and she was very special to me. She was a strong, Christian woman, and when we learned that Ellie was a girl, I knew that I wanted our little girl to be just like her.

You and your mom seem very close, but does she ever get on your nerves? My mom and I have always been very close, and we are very used to being with each other all of the time. We definitely have our moments, but overall we get along extremely well. She really is my best friend, and I don’t know what I would do without her!

Are you going to write a book? Or....as Nanny says:"Amanda needs to write a book!" I love to read, and because of my love for reading I have always wanted to write a children’s book, but I wasn’t ever sure what topic I would write about. Well, after this past year, I have come up with two topics that I would love to write about- being a NICU baby, and being the child after a late loss. I know that there is already a book out there about being the child after a late loss, but I don’t feel that this topic is a “one book fits all” type of topic. Different people handle their losses differently. I know that these books wouldn’t ever become best sellers, but they are two topics that are very dear to my heart.

How long is your mom going to continue to update Ellie’s page? My mom plans on continuing to update Ellie’s page as long as people are interested! We love having it especially now during RSV season so that we can keep family and friends updated with Ellie’s new pictures and her progress. We hate not being able to have visitors, but we hope that all of our pictures and updates make people feel like they are part of her life.

Those are the questions I am most commonly asked! I appreciate each and every one of you that have become a part of Ellie's life through her facebook group! Ellie is proof that there is power in Prayer!