Fight for Preemies!! Our story...

(Maddy at 7 weeks, 2 days shy of her due date)


Today is Preemie Awareness Day. I have joined Bloggers Unite (see button to the right) to Blog for Preemies. As you probably know, Maddy is a preemie. She was born on January 29, 2009 at just barely 33 weeks, 6 days and weighed a meager 3lbs, 12oz & 16 3/4" long.

I developed a sudden onset of severe preeclampsia and started showing signs of HELPP Syndrome, so she had to be delivered via emergency csection. I went from being at home w/my 2 year old and talking to 33 weeker Maddy in my belly and snuggling, to 2 days later, being tied down to the operating table, numbed & sliced open and had that uncomfortable pressure of having a baby ripped from your body, and feeling an intense flood of emotions without the gratifying kiss from your husband of a job well done (he was barely allowed in...not his fault!) or the snuggle of your brand new baby. I had barely 2 doses of steroids in before she was born, but thankfully she was born breathing on her own, never needing oxygen to breathe. They whisked her off to the NICU and I was alone (aside from hospital staff). I couldn't believe what had just happened, and it felt like a dream. A dream I wouldn't wish upon my worst enemy & one I don't want to ever have to experience again.


Madelyn stayed at the NICU for 18 days due to her having alarms (one of the requirements of being discharged from the NICU is the baby needs to not have any breathing or heart alarms for 7 consecutive days before release). Maddy would hold her breath or her heart would beat oddly for a second (common among preemies) and then another 7 day stretch would begin. She lost weight as normal newborns do and at her tiniest she was 3lbs, 3oz and was the same size as one of Sophie's doll babies.


Those 18 days were the hardest days in my life. period. It was so surreal that my sweet angel was lying in that incubator, crying in her sleep for mommy's touch (which it was amazinghow she responded when I did touch her), hooked to all sorts of IV's that she kept ripping out, a nasal cannula to feed her, and monitors galore. I was terrified to touch her, let alone hold her. I saw her a few hours after my c section for about 2 minutes and then not again until that evening because I was so overwhelmed by my own feelings. It's weird not being able to hold your baby after they're born, not being able to nurse for days until they're strong enough to start learning how to suck, holding her for 5 minutes before she's too tired to be held, having a nurse take complete care of YOUR baby when all you want to do is wrap them in your arms and run away. I felt helpless and in the way, when all I wanted, no, needed to do is bond with my sweet tiny girl and learn her smells and who she is.It was hard trying to find rides into the hospital and someone to take care of Sophie so I could try to nurse Maddy.


My days went something like this:
Get up, look at pictures my Dad & Aunt Dolores printed of Maddy while I pumped (helped encourage letdown), package and label milk for the NICU, take my fenugreek/blessed thistle/vitamin/mother's milk+ supplements, shower (sometimes), feed Sophie & get her ready for the day, pump, package and label milk for the NICU, put on the tv so Sophie quits begging to use my pump to pump her boobies, message Brian to feel normal again, find a ride to the hospital, try to clean up the house and continue working on washing Maddy's clothes and setting up the nursery, make lunch for Sophie & I, take my fenugreek/blessed thistle/mother's milk+ supplements again, have said driver arrive to pick us up, pray the whole way that we get a good report when we get there, get to the hospital, put our belongings in a locker in the waiting room, get buzzed into the scrub area, scrub up and sanitize our hands, meet the nurse caring for Maddy that day (our FAVORITE was Rita & the receptionist Diana), get report on Maddy, see Maddy, take Maddy’s temperature, change Maddy’s diaper, hold Maddy, try to nurse Maddy (sometimes worked, sometimes didn't), let Sophie see Maddy, talk to Maddy, sing to Maddy, take pictures of Maddy, let other person with me hold Maddy while I chase Sophie and get her to stay behind the privacy screen, rewash and re-sanitize hands, an hour later Maddy has to go back in her isolate, say goodbye, hold back tears, go back home, pump, package and label milk for the NICU (which was the most abundant after seeing her; amazing how the maternal response to seeing baby helped!), make dinner, take my fenugreek/blessed thistle/mother's milk+ supplements, watch the news, pump, package and label milk for the NICU, work more on getting ready for Maddy at home, do dishes/clean up the house, give Sophie a bath and bedtime snack, stay up reading books and pamphlets about preemies and watch TV to get my mind off of it, pump, package and label milk for the NICU, get my breast pump ice packs ready for when I pumped throughout the night, try to fall asleep and then wake every 2-3 hours naturally to pump, package and label milk for the NICU before starting it all over again.


I felt very alone, even though I had Brian & Sophie around me (who were amazing supports!). I had support from my mom who helped w/Sophie & helped prepare things for Maddy's nursery when she came down from NY for a week and gave us rides to the NICU daily & watched Sophie while we were there,
had support from my in-laws who took me over to Maddy every weekend & came to the hospital a few times while I was there to encourage and support, had support from my dad
& step-mom who were amazing and watched Sophie throughout my extended hospital stay and visited us daily in the hospital (a HUGE help getting to snuggle my 2 year old in the hospital, even if I couldn't snuggle Maddy)& visited every Sunday in the NICU, had support from my Aunt Dolores who took Sophie & I to the NICU a few times, treated us to lunch and gave me a sweet necklace because she was proud of me & watched Sophie while I nursed Maddy, and had support from my MOPS group, even though we hadn't been able to attend for a few months prior.


I had a few visitors while I was in the hospital still after my c-section, but once I was home, that was it. We didn't even have visitors (aside from my close family) and I felt like they just didn't know how to react, not that I blame them. It was tough in those early weeks! And when we did have visitors, I just wanted them to get going so we could go to the NICU. I wanted to share them with her, how that NICU worked, how tiny and strong she was. And I wasn't shy about nursing around visitors either. I wanted to ooze that confidence that my baby would get whatever I could give her. A lot of my visitors were uncomfortable with breastfeeding, which gave me MORE confidence to want to try harder.


Nursing a preemie has it's good and bad points. Good points-she didn't eat much at first and I could fill her tummy with only 5cc of milk. I felt successful! We got to snuggle skin to skin and the nurses said she was always so calm and peaceful after I left her. Bad points-preemies get tired easily and sleep a lot, so you don't get many attempts to nurse. Nursing takes up most of their energy, so by the time I got her successfully latched, she was nearly asleep. Her mouth was too tiny to get a good latch for the first few weeks too. It's hard willing your milk to come in, and when you have severe supply issues like I have, there just aren't enough options out there to try! I am blessed that my friend Lauretta had just had a baby in the beginning of January and graceously offered to pump extra milk for Maddy. I know that helped boost Maddy's immune system, despite being born in the middle of cold/flu season.


When she finally was allowed to be discharged, she was close to 4 1/2 lbs. We had to quickly buy a Chicco carseat, as Maddy was too tiny for the carseat we already had. I didn't have a ride (or a car) until that evening, so we picked her up at 7pm and didn't get to do any of the typical discharge stuff (pictures, hugs from nurses, etc), but were so proud to take our sweet baby home finally. We all crammed into the car and snuggled once we got home. I'm still thanking God SO much that we lived in that crappy duplex, because we were literally 8 minutes from the hospital.


I felt robbed of getting to experience her entire pregnancy. I was angry at myself because (even though the doctors said otherwise), I blamed myself for letting this happen. If I had only drank more water (I was up to 79oz/day!), exercised more, laid on my left-side at night instead of my right...I felt like I had no control of what happened to my daughter & hated it.
It was strange going to my 6 week check-up the day before my due date (which was March 13). But at the same time, I felt like I was given a unique gift of knowing my baby already, while most mommies-to-be are complaining about the aches and pains of the end of pregnancy. While they only felt the kicks and wonder what that baby would be like, I already knew. She was here, she was healthy & she was mine.


I'm happy to report that at 9.5 months old now, Maddy is right on track with other babies her age. She's around 18 lbs and 28" long (what a growth!), is developmentally on track with scooting across the floor on her tummy, 2 teeth (working on #3) and calls for me "Mmmm" or "Mmmmamama" or "Mmmmmumum". I lovethat she says my name! She is quite the snuggler too, probably because of how much I held her in my wrap to keep her close to me at all times and the "kangaroo care" we did. I snuggled her so much that she's grown into a big snuggle bug! She's got gorgeous blue eyes and a huge smile that melts your heart.


I use cloth diapers on Maddy partly because it is something so good for her that I can do. I hated how she got yeast infections and bleeding, oozing diaper rash from the nicu pampers disposables and as soon as I got my hands on some (in March '09), Maddy was cloth diapered no problem. I couldn't nurse after my milk dried up at 2 months, but I can cloth diaper her no matter what and I KNOW what is on her bottom. I couldn't keep her from entering the world earlier than plan, but I can do my best to prevent her from getting reproductive cancer from disposables and leaving it early.


I think about those early days and tear up now, knowing how fragile she was and how I had to push myself to stay strong for her. I cannot believe how tiny she was and what obstacles she has overcome. I am grateful for the March of Dimes for helping other preemies out there and advancing technology so our story has a happy ending. Many do not. My friend Jennifer over at BabyMakin(g)Machine had a March of Dimes fundraiser this fall raising over $1100 in a month for these precious babies & I hope we can actually walk in a walk for babies event this year. God has blessed my family and I pray that other families out there going through this will be blessed as well. What a great organization.


Some information taken from the Fight for Preemies bloggers unite site:

“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.

Medical advances give even the tiniest babies a chance of survival, yet for many babies premature birth is still a life or death condition. It’s the #1 cause of death during the first month of life. And babies who survive face serious health challenges and risk lifelong disabilities.

The rate of premature birth has never been higher. In half the cases, we simply don’t understand what went wrong. We need to fight for answers. And, ultimately, preventions.

November 17 is dedicated to raising awareness of the crisis of premature birth.

We need to fight ― because babies shouldn’t have to.”