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.