My new reality

Saturday, May 29, 2010: Me at 24 Weeks:

Tuesday, June 15, 2010:

This week would have marked 26 weeks. The start of my Third Trimester. But I’m guessing you’ve noticed that the belly doesn’t really look like I’m 6 Months along. And that would be because I am no longer the pregnant lady.

I’m a Mommy.

My daughter, Abigail Jenifer Francis, was born at 1:30pm on June 2nd, 2010. She came into the world 16 weeks early, and weighed in at 1 lbs, 8oz and 12 3/4 inches long. She is classified as a “Micro Preemie.”

I can’t really describe to any of you what that actually means to me right now. While I know in my heart that I became a Mom the moment I learned I was pregnant, my head is just not ready for my new reality. For the last 6 months, I’ve been so obsessed with “September 18th” that “June 2nd” won’t stick. I find myself double checking the date, making sure I’ve gotten it right. So much so, that after she was born, I realized I didn’t even know the date! I had to ask – what is the date today? And when the reply of  “6-2-10” came back at me, it just didn’t compute.

Truth be told, it still doesn’t. Tomorrow, Abby turns 2 weeks old. But it is difficult to continue to grasp the concept of a June Baby, especially when we don’t work with her “age” like that in the NICU (Neonatal Intensive Care Unit). We work with her age as if she was still inside me. They don’t say “2 weeks.” They say 26 and 4, which means 26 weeks and 4 days gestation. Had today gone “as planned” I would have been settling into the home stretch of my pregnancy, knowing that I had entered my third trimester. Today, I would have been at work, answering phones, inputting orders, and playing with Pup. Today, I would have gone to my Pre-Natal Yoga class to help with the back pain that my pregnancy was causing. I would have had some sort of weird craving just before dinner was ready, and I would have enjoyed several half-hour intervals of “Peep” kicking me.

Never, in a million years, would I have imagined how different today would actually be. Just under 4 Months early, my daily schedule is now completely based on the two most important things in my life – visiting Abby in the NICU and pumping breast milk. I wake up just before 9am (which isn’t actually sleeping in… it is necessary recuperation from what I keep forgetting was “major” surgery). The first thing I do after potty/teeth brushing is pump. And every three hours after that, I pump again. Feeding Abby breast milk is THE one thing I can do to help her along the road to recovery and coming home to us. I can’t help her breathe better. I can’t regulate her heart rate for her. I can’t keep her warm anymore. But I can give her the nutrients and immunity she needs to survive. So pumping that “liquid gold,” as the nurses call it, is the focus of my day. And we visit Abby twice a day. Once in the afternoon, and once in the late evening to say goodnight to her before coming home and heading to bed. 2 visits are about all she can handle at the moment, but those two visits are spent bonding as best we can with our tiny baby girl, and Anthony and I cherish those visits as if our lives depended on it.

Our life right now is just so different. Things that parents are SUPPOSED to take for granted are serious milestones for us. For example, most parents don’t even think about the “when” of all the little things that just happen naturally during those first 24 hours – “When” can we see her open her eyes? (One of them opened just 2 days ago, and the other is still fused shut). “When” can we hear her cry? (We heard her tiny cry for the very first time, 9 days after she was born.) “When” can we hold her? (At two weeks old, I’ve never held my daughter in my arms. And another week or so will pass before I do.) Little things that people would never imagine having to do are reality for us – like asking the doctor how her daily blood draw went, or getting  briefings on her stats/meds/conditions every time we see her, or scrubbing in like a surgeon EVERY TIME we visit her… I swear to you, the underside of my nails have never been this clean! We have to sanitize our hands any time we even accidentally touch something outside of her “house.” Like the other day – Anthony absent-mindedly put his hand in his jeans pocket… and then had to re-sanitize before he could touch her again. I think the worst part of it all is that I am her mother, and I have to ask someone else how my own daughter is doing every day because I don’t know for myself.

And the fear factor! Oh, Lord, give me strength. I can’t even begin to tell you the kind of fear level I can handle now. While she is just the most precious and adorable thing I have ever laid eyes on, it is so scary to see all these wires stuck to her, and some even stuck IN her to keep her alive. It is scary to have tubes stuck down your baby’s throat just so she can breathe. It is so scary to hear the alarms go off whenever her oxygen level or heart rate drop. It is scary to watch her struggle to breathe, or to have a nurse literally push you out of the way to bring your daughter back from a “crash.” I’ve cried more tears in the last two weeks than I have in the last several years combined. My emotions are high and my energy is low. And if it weren’t for the strength I draw from my family, close friends, and (most intensely) my amazingly strong husband, I would probably be curled up in a ball in a corner somewhere and the crazy police might have to take me away in a straight jacket. No Joke.

I feel obligated to stop there and tell you that, overall, Abby’s story is a highly positive one. I don’t want to sound like everything is negative, because the progress she has made in just two weeks is utterly astounding. She is much stronger than even the Doctors expected her to be, and they are consistently happy with her daily progress. But that is just it – that is the overall picture. It is the day-in, day-out that is so hard. We call her our “Tiny Dancer” because she is doing this sort of dance where she takes 2 steps forward and then one step back. She does this little dance several times a day. While it is great that she is eating and digesting almost 2 full ounces of breast milk a day, she is having more heart rate problems than she was having last week. While it is great that she is off the ventilator, she stops breathing when she falls into a deep sleep and they have to wake her up to get her to breathe again… so going back on the ventilator is a real possibility. And as long as she continues to need that breathing help or has heart rate dips, we can’t hold her. She has to stay in her little “house” for her safety. All of these back and forth movements are totally normal for a baby her size – technically at 26 weeks, they shouldn’t be able to breathe on their own AT ALL so the fact that she has been off of a ventilator for 5 days is simply a miracle. But the reality is that her life is still fragile and still in danger. And that is a very hard reality to face.

In just 2 weeks, several babies have already come in to the NICU and gone home. And while I am so happy that these babies are healthy, I am so jealous of these mothers that get to be wheeled out holding their little ones that are younger than my little one. I was visiting Abby just a few days after she was born, and a baby came in that needed observation. This baby was 4 weeks early and only weighed about 6 pounds. The mom came in and couldn’t believe how small her little girl was. And in any other situation, I would have agreed!!! But as I stood in my corner with my small hand cradling Abby’s whole body, I couldn’t help but think, “Lady – you have no idea what small is.” So, of course, I am thankful for the ability to keep my mouth shut. 😉

Abby is still the smallest baby in the NICU. But she already has a following! The nurses love her. And while I know that I think she is just adorable, it is nice to hear that others think she is cute as a button, too. Her doctors like her progress and we have every reason to believe that we will get to bring our little girl home by her original due date. So yea – this is my new reality. I have a beautiful baby girl, who is living in a “womb with a view” and fighting hard to come home to me. To us. And my days from now until then are centered around her care, just as if she was still inside me. So while it is totally different from how I envisioned it, my third trimester is going to come and go, and come September, I will be bringing home my healthy and happy Abigail. And in the end, that is all I can hope for.

-Jen

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9 thoughts on “My new reality

  1. Micki says:

    Your stories bring back memories of our little Jennifer – 38 years ago. The three months she spent in NICU were very wearing – but she did become family for the nursing staff at the hospital. One of the nurses started making little kimono jackets that were the right size for her. That support was really comforting. Someone else cared with my husband and me.

    I do remember going back to work – and slipping into the bathroom (ugh!) to get breast milk. Each half ounce gain of weight for our little girl was a victory of sorts.

    The tubes and wires are confusing and frightening. I was especially upset the day I came in and there was a huge tube coming out of her head – the only vein doctors could find that would handle the medicine they needed to give her. But they did what was needed to help her.

    I am sitting at my computer crying with you over the little things – but also remembering that our God is a good God and gave us 5 additional healthy babies – who are now adults and having children of their own. Stay strong – lean on the support that is there – and keep praying.

    God bless.

    Micki

  2. xo Jen!
    A friend of mine had a preemie a couple years ago (she might have even been considered micro, I forget), but I have a little bit of an idea of how hard it is for you right now …
    Let me know if I can do anything!
    xox

  3. Dana Rodden says:

    I had no idea any of this was going on, so my heart rests with your attitude. You are blessed and you will be blessed with your daughter coming home before too long. Keep your head high and your heart strong. You’re fighting the good fight in so many ways, as hard as it may seem now. Before too long … before too long… you both will be whole again and your family complete again. If I can help in any way… name it.
    Dana

  4. Wow I didn’t know our kids shared a birth day too! Anthony was born june 2nd 2007. I hope little Abby is still continuing to amaze everyone! I know she is in the best hands!

    Kim

  5. Hello Jen-

    It is so amazing to read this- I am both so excited and so sad for you. I honestly don’t know how you feel right now. My now 6 month old daughter was born healthy and 1 week late. But I do know how much I love her, and how amazing this love is, and how much bigger it gets every single day. It is 20 million times bigger than it was when I brought her home.
    And so my hope for you is that you can experience that, and get to know the person who will become the jewel of your life, the person you would do anything for, the person who needs you so much.
    Your milk is the most powerful elixir- I am so proud of you for pumping.
    Congratulations on your new life- and welcome to the world of Motherhood, however strange it may be. Everyone’s journey is different…

    Love,
    Maeg

  6. Kaitlin Schubert says:

    Hey Jen, You dont know me, but I just wanted to let you know that I am praying for you and your family and I pray that the Lord will give you the strength you need during this very difficult and emotional time!! Your story is very touching and it just reminds me of how grateful I am to be alive and I will continue to pray for you and your precious gift!

  7. Sunni Wallace says:

    Hi Jen –

    You don’t know me but I was sent your link because I too just had a “micro-premie”. My little p-nut was born 16 weeks early and I swear I could have written this blog word for word pretty much. It is almost impossible to deal with the emotions that this situation brings on and if it weren’t for my husband I would be locked up. I thought coming home without him was the hardest thing but I know that the road that I am going to be traveling for the next 4 months is going to be far rougher.

    I am so thankful that your little one walked away fine from her ordeal and I pray so much everyday that Preston is that lucky too.

    Love,
    Sunni

    • Sunni –
      Thank you for the comment. I’m glad my blog can be of some comfort to you. The road is long, and even the best of them have both ups and downs, but medical technology can do amazing things. My husband and I will pray for you and your family. Take care, and if you need someone to talk to, please let me know. I would be happy to lend an ear. I also have MANY contacts of other moms and dads who have been there, too – and surrounding yourself with others who understand the road you are on can do wonders for your mental health and your spiritual strength. Please keep us posted on your little one’s progress!

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