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.