Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Monday, August 11, 2014

From Birth Day to 4th Birthday

During the four days leading up to Jack's 4th birthday, I made an attempt to summarize what our journey has been like the past 4 years through Facebook.  Something about the number four is significant for me.  I think it's because Jack's birth story lasted 4 days (from the Saturday I was admitted to the Tuesday night that he was born).  While his birth day was one of devastation, his birthday will always be one of celebration.  In your spare time, please read our story:

Birth Day - August 10, 2010

August 7, 2014:
Four years ago, on August 7, I called my OB's office early in the AM to ask about the headache I had suffered from for over a week. I asked to be seen and she offered me an appointment on Monday (it was Saturday morning). Could I take more Tylenol than suggested? Read the directions on the bottle, she said. About 8 hours later, with a headache, nausea, and chills...I called the office again and got the doctor on call. She asked me to check my BP, but I insisted I was coming to the hospital. My BP was 211/115 or so and I mentioned that something was wrong with their BP machine. "No, honey, there's something wrong with you." We immediately chose a name and I was transferred the next day to a hospital that could care for such an early baby. At the new hospital, they spoke of bedrest (in the hospital) until I hit 35 weeks or so. I was given "the mag" to stop seizures and possible stroke and to protect Jack's still-developing brain. I was also given steroids to help speed up his lung development. Then suddenly, the conversation shifted and there was discussion about not being able to save both our lives. The drugs to keep my BP at safe levels were not working. My life was in danger. (I'm sure there is more to this story, but "the mag" keeps the patient pretty "out of it" and also causes memory loss.) I knew I didn't want to die, but I was so, so unaware of how precarious life would be for Jack on the outside. Had I known, I'd like to think I would have fought against the emergency c-section (probably to no avail). I was awfully calm, a nurse noted. I didn't know any other way to be. Not long after, Jack was born (weighing 2lbs 1oz) and ready to fight for his life. The surgeons said, "Hi Jack!" (so glad we chose a name) as he cried quietly. I didn't see him until over 24 hours later. What a journey it has been!

First Birthday - August 10, 2011
August 8, 2014
(Fine print:  I apologize for any confusion yesterday.  Jack’s birthday is on August 10th, but I feel like his birth story starts on the day I entered the hospital and we named him).  We abruptly stopped our normal lives and entered the world of the NICU.  We discovered that Jack was very sick and smaller than a typical 28 weeker.  He (and we) would spend four months in the NICU, slowly becoming strong enough to come home, but not exactly what one would call healthy.  Once home, we would survived from one tube feeding to the next, hoping beyond hope that someday our boy would eat on his own and breathe without support.  It was a blur of inserting NG tubes, giving medications, preparing special formula, fighting with insurance companies, therapy sessions, RSV injections, and specialist appointments.  All with the happiest boy in the world.  Despite his rough beginning, Jack’s personality was more than smiley!  Once he was finally relieved of all his tethers, tape and tubes (at about 10 months), we started to see him hit some typical milestones…sitting up on his own and crawling at his 12-month doctor’s appointments. As he turned one, I slowly stopped holding my breath, realizing that he just might survive.  He was growing stronger every day.  At a time when I thought I would also start feeling more like myself, I instead started to relive the NICU nightmare, become very irritable and crying for what seemed like no reason.   While he was in the NICU, I wrote almost daily about his days.  As I relived those days a year later, I realized that what I wrote was not exactly what occurred…I was protecting myself (and others) from the trauma of the NICU and the war that is too often waged by 2-pound soldiers.  PTSD…it’s not just for vets.  I learned from other NICU moms that it’s only natural that surviving year one would now allow time for processing what really happened.  Both Jack and I had faced death and we survived.  That’s when I felt the need to start blogging about what prematurity and the NICU life (and after) is really like.  So while Jack was happily on his way to healing, my healing (both physical and mental) was just beginning.   

Second Birthday - August 10, 2012

August 9, 2014:

As Jack turned one, I still bought into the hype that preemies typically catch up at age 2. He started walking at 18 months and running shortly after. He loved to play at home with his toys and books and watch Mickey Mouse. He was happy all the time; except when we went to his many, many appointments. He received, for the 2nd year, Synagis injection that helped his body create antibodies that he didn’t have from being from early. A common cold for you (RSV), could have put Jack back in the hospital or worse. We kept him healthy, giving his little lungs time for growth. He might have missed some family events and trips to the grocery store, but he didn’t know it and kept smiling! He was signing, but not saying much. As he approached two, we realized that “catching up” was going to be later for him and increased his therapies to three each week: Occupational (which he was receiving since 6 months old), Physical (started at 12 months), and Speech (at 18 months). They were fun “play” times for him, with one-on-one attention from great therapists who became like family to us (especially during “lockdown”).  Finally, the summer before Jack’s 2nd birthday, we gradually “let go” of the fear of RSV and other illness and spent an awesome time doing all kinds of things together. The beach. Restaurants. Amusement parks. Family events. Playing with cousins. Disney World. And Jack’s first real illness (of many to come)…a cold that turned into an ear infection and pneumonia within days. Discovered he still had atelectisis (a complete or partial collapse of a lung or lobe of a lung) despite the two years of growth. We also mixed in a possible seizure, a trip to the ER and an EEG.
Third Birthday - August 10, 2013

The years between ages 1-3 are a blur…the days were long, but the years seemed to fly by. I took another year of leave from my job and eventually resigned to become an official stay-at-home-mom (SAHM). And boy did we stay at home. Preemie parents call it “lockdown” since many of our little ones suffer from Chronic Lung Disease (CLD). We knew the first 2 years were critical for Jack’s lung health, but it wasn’t easy staying home so often or missing so much time with our family and friends. While I wasn’t the mom I thought I’d be, I’d like to think I was exactly the mom that Jack needed. I wasn’t just a SAHM…I was a therapist…I was a nurse…I was a nutritionist…Iwas an advocate for my child. I mixed playtime with therapy goals and administered meds while we watched Mickey Mouse. I added heavy cream and butter to as many meals as I could and encouraged Jack to eat his mac & cheese before his peas…hoping that just once, we would see a doctor or specialist and they’d have something positive to say about his weight. I blogged and I shared our story. I joined the Family Advisory Council to help other families at Penn State Hershey Children’s Hospital. And I so desperately wanted, no, needed everyone to understand what we had been through. I spoke with a therapist who compared my concerns about Jack’s health and delays to parents who were disappointed that their son didn’t play the piano as well as they’d like. (The opposite of understanding or “getting it.”) I moved on. I found fellow preemie moms support group and I got more “therapy” in that one meeting than I ever did with my real therapy sessions.

Fourth Birthday - August 10, 2014
August 10, 2014:
Can he really be 4?  Has it really been 4 years since that traumatic day?  Are we really four years into this journey?  Some preemie parents in the NICU envision the future.  I couldn’t see past the day-to-day and still often don’t.  So Jack being 4 is such an awesome surprise to me.  He’s feisty and funny, silly and sassy, lovable and LOVED.  In this fourth year, he started preschool…loved it…and made so much progress in socialization, speech, and in his fine-motor & gross motor skills.  He became a big brother.  He is STILL obsessed with all kinds of transportation and can now identify the makes of most cars.  He even knows the difference between Honda and Hyundai.    Of course, he also can identify the alphabet and numbers and colors and shapes!  The conversations we have with this kid are amazing!  And each day he comes up with more and more to say.  He has imaginary “signs” that spell out what he wants “right now” and “every day.”  He’ll say, “My sign says I can stay up all night.”  Or, “The sign says to go outside.”    He loves to be a “Yard Crasher” with daddy and do BIG JOBS with him.  Right now he’s outside building something from Lowe’s.  He’s always ready to get his tools or go on an adventure with mom.  He wakes up most days asking, “Where are we going today?  Who is coming today?”    Basically, he’s HAPPY!  And he is Jack-HEALTHY, meaning he still has CLD, which is treated with daily inhalers and extra meds when sick.  A cold might last a little longer than typical for others, but he handles it just fine.  And he still needs some extra support for his fine & gross-motor delays.  But, during his most recent IEP (Individualized Education Plan), he was able to be discharged from Speech Therapy and decreased the number of Occupational Therapy session to every other week!  Physical Therapy will still be every week and he’ll be attending pre-school 3 days/week this year too. 
As for me, there are days where I have constant conversations in my head, about prematurity awareness and understanding and educating, and I still desperately want to make things better for new families affected by prematurity.  So I am now co-chair of the newly formed (Jan 2014) NICU Advisory Council at PSHCH and a board member of The Foundation for Prematurity.  And then there are days when I want to just let it all go and pretend it never happened and isn’t still affecting our lives (as if).  For it is still affecting our lives and may always do so, but the impact seems just a little less each year and for that I am grateful.  I’ve learned so much from Jack and from this journey.  I’ve learned to let go of expectations.  I’ve learned to be more compassionate.  I’ve become more decisive (when it matters) and more aggressive (when it is necessary).  All because and all for Jack and now Harper!  I’ve learned that parenting is hard, not matter how early or on-time your baby arrives.  For me, parenting a preemie has been different and more extreme than parenting a full-term (or close to it) babe.  But the love for them is the same.  And it is a big, big love.   HUGE.  And I’ve learned that all I want for both of them (no matter when they were born) and for myself is to be HAPPY and have a LIFE THAT’s GOOD! 


  1. This story was VERY inspiring and not all that different than mine. I ended up being admitted to the hospital at 27 weeks and having my gall bladder removed, and my BP was VERY high that whole time. I was released for a few days and suffered a seizure in the middle of the night (due to my BP being too high) and ended up back in the hospital on Memorial Day this year. That whole day was a blur as they were giving me more and more meds to get my BP down, as they were worried I would have a stroke and they could possibly lose us both. At 5:45 PM, after they had given me all of the meds they could give me to no avail, I delivered my little 2 lb 2.5 oz little girl, Bailey via emergency C-section. In the next few days, she dropped down to 1 lb 8 oz. and I was terrified that we were going to lose her. She spent a total of 8 weeks in the NICU and it was the most stressful experience I have ever had! My son is 9 and was an almost full-term baby (born at 36 weeks but totally healthy), so this was a polar opposite of my first experience. She has been home now for about 3 weeks and things are still super stressful. We got lucky that my gall bladder went out when it did and they were able to give me betamethazone (to speed up lung development) for 1 week prior to delivery, which, we believe, is why she has done so well and came home with no oxygen. Through this journey, I have noticed that people that have never been around a preemie baby have absolutely NO idea how different it is. Something as simple as feeding a preemie is so very different from a full-term baby, and how one wrong move could land them right back in the NICU. I am SO glad to hear that your little Jack is doing so well now and how you have used your experience to help other parents dealing with this life altering situation!! Thank you for your inspirational blog, and I wish you all the best for the future with Jack!!

  2. Our stories are so freaking similar! Even their birthdays are within 5 days of each other. Just a few years difference. I agree totally that parenting a preemie is different then parenting full term. My second (35wks) just does things automatically, right when he should. Its almost surreal. Things we had to really encourage Robert to do, Carson is just doing on his own. Like wanting to eat solids for example. (or how about eating in general! teaching a baby to drink a bottle is SO hard) Robert turned 2 August 5th. I made a frame for the NICU, two side by side pictures of Robert at birth and Robert now. Incredible the size difference. So incredible. 2lbs to 28 in 2 years.

    Mag sulfate is wicked stuff I agree! I was on it after the c-section for 48(?) hrs. I know more then 24. I don't remember a lot! I do remember crying and telling the Dr "No he is too small" but she gently said "No you will die, we are rolling you into the OR now, he will be fine the NICU team is ready". My blood pressure was like over 220. AH!

    Hope you had a lovely summer with your two kiddos:)

    1. O I forgot to add. Carson is 8.5 months. He is wearing and out growing fast things Robert wore at 1 year. So different!