Tuesday, November 17, 2009

Prematurity Awareness Day

Today is Preemie Awareness Day. I have joined Bloggers Unite (see badge to the right) to Blog for Preemies. I had debated whether to do this or not…I finally feel healed and didn’t want to have to recall again how hard everything was, but I need to do this, not for me, but for others, to make them aware. So, today I am blogging for a baby that I love – my daughter Lily who was born too soon.

At 28 weeks I was hospitalized with severe and sudden onset pre-eclampsia and HELLP syndrome, I also had a blood clot in my arm. We were told that I would be delivering in 48 hours – we were shocked. Thoughts raced through my head…nothing was ready, I wasn’t ready, what about work, how small would Lily be? I didn’t really know what a NICU was, or how small a baby could be and survive, or what kinds of difficulties preemies face; I hate to say this, but, like many of you, I thought that a preemie was a cute, small baby, not realizing there is nothing “cute” about having a preemie and they face many challenges and obstacles.

With the help of my Doctors, lots of drugs, close monitoring, my very supportive family, friends and co-workers, lots of prayers and strength that I dug down deep to find, we lasted 3 weeks in the hospital until it was just not safe anymore and Lily was delivered at 31 weeks. I had a crash c-section and was completely put under after having a seizure during my spinal – I never saw Lily being born, to this day, any day that I think about that, I can tear up in an instant. Chris was waiting in his scrubs to come in to the operating room, after about an hour of waiting the nurse came in to tell him that there had been some complications and Lily was born at 2:43 p.m. She weighed a mere 2 pounds 14 ounces and was 15 inches long. The Doctors said she came out screaming and had Apgars of 7 and 9.

During my hospital stay, I had to take one-day-at-a-time, I couldn’t really think about the NICU or what that was going to be like, in retrospect, I couldn’t have even imagined how awful it would be. I can’t explain what it’s like to carry a child, and then wake up and not be pregnant anymore. People are telling you that you’ve had your baby, you haven’t seen her, and still feel pregnant, to say the least, it’s unnatural.

Having a preemie means having to say goodbye to a lot of things that most first time parents take for granted. I finally saw my daughter the day after she was born, she was much smaller than I ever could have imagined she would or could be. The day after that I was finally able to hold her. She had leads on, iv’s and had a central line in her umbilical cord so she could be fed. It took a lot to even hold her. I had to be seated and ready, the nurse had to get all her wires straight and then get her out of her isolette and place her into my arms and then she could only be out for about an hour to be held, because of overstimulation. This was a lot for a first-time mom to understand and comprehend – this was what having a preemie was going to be like.

From the moment Lily was born I was sad and felt like nothing was fair, I was happy that things had gone “good”, but felt like things could have went a lot better. I felt a tremendous amount of guilt that I hadn’t been able to last longer, I was sad that she wasn’t in my tummy anymore, I was sad that I couldn’t be with her every moment and had to put all my trust in her nursing staff, I thought it was unfair that I hadn’t gotten the full “experience” of being pregnant, and hadn’t had my shower yet, I felt conflicted worrying about work and about Lily surviving. I think some people thought it was weird that I had all these crazy worries and feelings of things being unfair and was crying about this stuff. I think if you have a preemie and are happy with a NICU experience, and you don’t cry when you leave your baby each time at the NICU – I think that is weird. It’s unnatural, having a preemie is unnatural. It’s totally weird and bizarre and yet becomes part of your life. Having a preemie turns your life upside down and no one knows how they will react until they are in the situation.

For 44 days, our days went something like this: Get up, pump, package and label milk for the NICU, shower (sometimes), head to the hospital, pray the whole way that we get a good report when we get there, get to the hospital, put our belongings in a locker, scrub up and sanitize our hands, get buzzed in, meet the morning nurse, get report on Lily, see Lily!, take Lily’s temperature, change Lily’s diaper, hold Lily and do Kangaroo Care with her (we can only do it twice a day, so we take turns, one of us does it in the morning and one of us does it at night), talk to Lily, sing to Lily, take pictures of Lily, an hour later Lily has to go back in her isolette, say goodbye, shed tears, pump and package milk, go home and work on Lily’s nursery until her next care time in 4 hours, call family and give report on Lily, eat, pump and package milk, back to the NICU, hoping for another good report, put belongings in a locker, scrub up and sanitize our hands, get buzzed in, meet Lily’s afternoon nurse, get report, see Lily, take Lily’s temperature, change Lily’s diaper (we take turns on this too, and fight over it), Kangaroo Care with Lily, more pictures, more stories, more promises whispered into her ear about how things will be when we are all together at home, our hour is up time to go, pump and package milk, shed more tears, get dinner together and try to connect, talk about Lily the entire time, get home and try to pay some attention to our cats, pump and package milk, try to clean the house, get Lily’s nursery ready, call NICU, hear that nurse is holding Lily, shed tears, go to sleep. Start over. This is not normal. Nothing about having a preemie is normal.

I felt like people didn’t know how to react (I don’t blame them), they didn’t know if they should come and visit, send something, be happy that Lily was born, or feel sorry for us. I didn’t know how I wanted people to react either. If people came to visit, it cut into my time with Lily – I was selfish and wanted that time with her. On the other hand, I wanted my relatives to meet her and see first-hand, how tiny she was and how things were at the NICU.

Most new parents don’t have to deal with all this stuff…they have their baby, relatives come to the hospital to visit, everyone is happy, they take their baby home with them when they leave the hospital, the car ride home is nerve-wracking, driving with such precious cargo, they maybe have some issues on who’s doing what, but things are easy. I wanted that. Unfortunately that doesn’t come with having a preemie. We were going to have to deal with some tough stuff.

During Lily’s NICU stay we had a terrible scare of NEC, they decided to stop feeding her for 7 days. An orogastric tube was placed in her abodomen, which essentially sucked green gross stuff out of her stomach. They were the worse days. One day when I came in, I saw her and knew that something was not right, she was pale, lethargic, wouldn’t open her eyes. I left that day and thought she would not make it. A worry a new mom shouldn’t have. During her stay she had 22 head ultrasounds to check for brain bleeds, her tiny little head was shaved and a picc line was put in a vein in her head to draw blood from and have her iv’s attached too. I can’t even count the number of times she had to get a new iv or how many heel pricks she had, she has tiny little scars to prove it. She was fed thru a tube in her nose and stayed in an isolette so her temperature could be kept up. A nasal cannula helped her breath. For about a week she had stickers on her face to keep her nasal cannula on, finally the stickers were removed and I saw my tiny daughter’s whole face.

One day I helped calm her and hold her still as she screamed because a nurse had to put a new iv in her arm. All 3 pounds of her screamed and fought the nurse, you would not believe how strong a 3 pound baby can be, Chris almost had to leave the room. For some reason I was as calm as can be – because I had to be – now when I think about it, I cry. This is what having a preemie was like for us as first-time parents.

Finally things started getting better and slowly she was taken out of her isolette, weaned off her nasal cannula, started bottle feeding and finally feeding on demand. Lily was ready to become a NICU graduate. We had faced some tough stuff. The car ride home seemed like a cake walk, compared to holding her down for an iv.

We finally brought her home and were thrilled, not knowing that we still had things to worry about. At her first evaluation we found out that Lily would need physical and occupational therapy for some developmental delays she had because she was a preemie. From January until May we worked and worked on things. She was discharged from therapy by her first birthday and we have been living a “normal” life since then. I am still nervous about this year’s evaluation and would honestly say as a mother I am probably more nervous about a lot of stuff.

Lily hit 5 pounds right before her due date

Everyone who knows us and has traveled this journey with us over the last 18 months, knows that it wasn’t easy. I believe that every child is a miracle – but each day when Lily looks at me and smiles and says “Mama, hold you” (which means she wants me to hold her), I can’t help but be overwhelmed with gratitude. I have a miracle looking at me everyday. I am blessed. Lily makes people smile, her laugh is contagious, she is as silly as can be. She is the best thing that I have ever done. She is amazing.

Today, when you see the smiles on our faces, it is hard to imagine all that Lily went thru, all that we went thru, and sometimes I even catch myself forgetting things about our NICU days. Time heals all wounds (therapy helps too) I guess. It is because of her start in life, all that we went thru and how we were “kept away” from her, that we do not taking moments with her for granted.

Our story has a happy ending, but not without a lot of tears, worries, fears and struggles….sadly, there are many families who do not get the happy ending. I know that it is something that is seldom talked about, but it happens, babies do not always survive being born too soon, there is a reason that women are supposed to be pregnant for 40 weeks – it’s not so they can get fat and swollen and hate how they feel – it’s so their baby’s brain and lungs can develop, it’s so their baby can breath on their own when they are born.

Thank you to everyone again for all your help, support, thoughts and prayers over the last year and a half – we couldn’t have done it without you. Thank you to those who helped us raise $1,400 for March for Babies this past April. Thank you for being “Aware” that preemies are not just “small babies”. Thank you for loving our preemie – Lily. Now, get out there and hug a preemie today!

March of Dimes Walk 2009

Some words from March of Dimes: “Premature birth is a health crisis that jeopardizes the lives and health of nearly half-million babies each year. It is the #1 killer of newborns and can lead to lifelong disabilities. Worse: the number has increased 31 percent since 1981. It can happen without warning and for no known reason. Until we have more answers, anyone’s baby, could be born too soon.”
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Trish said...

This was incredibly moving. Very, very well written.

BabyKevinMom said...

thanks for sharing. I love the picture with the 5lb bag of flour. very cute idea. I agree with Trish- very well written.

tammy said...

wow shana...what a life changing experience! thanks for sharing. very touching.

Azzy said...


Like you said, every baby is a miracle and Lily is your miracle. She is absolutely adorable. Your story like many other is so touching, thanks for sharing it with us.

Thank you for all you and your family have done for the March of Dimes. Your support is so important. There’s still so much we need to do. On behalf of the March of Dimes, we thank you for your supporting this event.

Jason said...

Jason here from BloggersUnite. Thanks for being part of the BloggersUnite event, sharing your story and helping to raise awareness for the March of Dimes and all they do.

What an amazing account of your experience. You brought me to tears once or twice...don't tell anyone ;)

kate hopper said...

Thanks for this wonderful post. As a mom to a former preemie (and as a another preeclampsia survivor), I really appreciate your honesty. I'm so glad Lily is doing well!


Fredy said...

Congratulations !
you have
nice baby , nice family .

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