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Guest Post: Pregnancy After Having a Child With Medical Complexities

Heather Lesoine is mom to Jack (3) and Harper (3 months).  Before becoming a mom, Heather was an elementary librarian. and now spends her days with Jack and Harper. She volunteers at Penn State Hershey Children’s Hospital as co-chair of the NICU Advisory Council. She’s also a member of the Family Advisory Council.  She is also a board member and secretary for the Foundation for Premature Infants. For the past three years, Heather has been sharing their journey with prematurity at www.jackryansjourney.blogspot.com.

 

When adding to their family, most parents probably consider many points, such as finances and whether their home is big enough for one more.  We didn’t give much consideration to those typical questions and focused mainly on survival…for me and for the new baby growing inside me.

An Early Delivery

IMG_1819Our first child, Jack, was born prematurely at 28 weeks weighing only 2lbs 1oz, measuring just 12.5 inches.  I had developed a severe case of preeclampsia, and delivery was the only cure and option to save both our lives.  That experience alone was enough to make us think long and hard about whether we would add another child to our family.  When considering a second pregnancy (and child), we knew that both my life was at risk, along with the new little one’s life. We had to decide whether we were willing to take the risk of having another child with medical issues. We also had to determine whether we were willing to put my life at risk again.

Jack’s first months were spent attached to machines helping him to breathe, a tube in his nose giving him nutrition, and lines in other tiny body parts to give him life-sustaining medications.  We watched him every day, fight to survive and learn to breathe on his own, and often wondered if he would make it another day.  As he slowly began to grow and develop, we quickly realized that we had entered a new world of medical complexity for our little boy. One we had never considered (or been aware of) when starting our family.

A NICU at Home

Jack spent 112 days in the NICU, but the NICU basically followed us home without the support of the nurses and doctors to guide us.  Because Jack had developed chronic lung disease (CLD) and had feeding issues, he came home on 24-hour continuous O2 and with a naso-gastric feeding tube (NG tube).  Our living room became a hospital room, with a feeding pump hanging on an IV pole and an oxygen concentrator in the hallway.  I had organized clear plastic bins with all the supplies – tubing, tape, gauze, adhesive remover, O2 tubing stickers, etc.  I dreaded Fridays because that was the day we changed Jack’s NG tube.  Yes, I held down our tiny boy as he screamed and placed a tube down his nose into his stomach. He could then get the nutrition that he needed to grow and heal from his early arrival.

web10We had a white board that listed Jack’s schedule of medication administration and feeding times.  We had multiple appointments with specialists (lung, nutrition, eye, feeding clinic).  And Jack also began occupational therapy about 2 months after he was discharged to help with developmental delays due to prematurity.  He also began to receive physical therapy when he was 12 months old and speech therapy at 18 months.  He is now a bright, happy, and full-of-energy three and-a-half year old boy, despite his rough start.  He still has CLD, GERD (and takes meds and sees a specialist for both), and is small for his age.  He still receives all 3 therapies for some developmental delays.  He has had more doctors’ appointments than I have had in my lifetime.

Considering a Second  

The world of medical complexities is all we considered as we decided to hopefully create a sibling for Jack.

    • Would we able to handle another journey with prematurity?
    • Even with Jack’s sweet disposition, was it fair to possibly put another child through that experience?
    • Delivering early was unexpected with our first pregnancy. Knowing that it was very likely to happen in a second pregnancy and bring along with it all the medical issues that prematurity entails. Was that fair to the new baby?
    • Was that fair to Jack, our child with his own extra needs?
    • Could we handle Jack’s extra needs plus a newborn (even without medically complexity)?
    • Could we handle Jack’s extra needs and a possibly a premature baby with a NICU stay and another journey with prematurity?

We asked ourselves these questions and many more, and often had different answers depending on the day.

The Experience of Expecting Again

I don’t know if I ever answered all these questions truthfully before we were surprisingly expecting again (when Jack was just shy of 3 years old).  The pregnancy was so focused on survival that I had not often thought past delivery to what it would be like to have a “typical” experience after one with medical complexities.  Whether we could have handled another experience like Jack’s, I’ll never know.  What I do know is that the very “typical” newborn issues we are presented with now often feel more overwhelming than Jack’s journey ever did.  It’s almost as if we survived and handled so much with Jack, that my tolerance level for anything out of the ordinary is very low.

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Harper had a fussy, gassy phase (very typical) and I was breaking down.  More than I ever had with Jack.  It’s almost as if I held it together so well for the past 3 years that the smallest thing broke me.  In some ways, we were so focused on the physical aspect of the pregnancy and second child that we may have forgotten to discern whether we were emotionally or mentally ready as well.

Lessons in Parenting – Medical Complexities or Not

Which brings me to the greatest lesson we have learned when adding to our family after our journey with Jack. Be cognizant of your emotional well-being when going for a second child. Don’t be surprised if the “typical” things are harder than you ever expected them to be.  Think farther than just getting through the pregnancy and try to imagine what life will be like with two. This is especially the case if your first still has some “extra” needs like our Jack does.  Line up help right away and use it until they stop offering!  We are blessed to have awesome grandparents.  If I learned anything, it’s that “typical” babies are overwhelming and difficult in their own way!

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I don’t know if I ever had complete faith that everything would be fine, that both the baby and I would survive the pregnancy.  So we took it day by day, appointment by appointment. I often felt like a ticking-time bomb, worried for my own health and for the baby.  But, when little Harper arrived (at 37 weeks because my blood pressure was becoming unstable), I did feel a huge sense of relief.  That we both survived, that she was healthy, and that I would never have to experience a life-threatening pregnancy again!

Once we were home, with our newborn and our Jack, I am noticing that his extra needs may not be met as quickly as they used to be. But that’s the nature of having a newborn at home.  Harper is now almost 3 months old and we are all slowly adjusted to being a family of four!

Tips or Questions to Ask Yourself

  • Consider your own health (physical and mental)
  • Consider the health and needs of your child with medical complexities.  Are they at a stable point and will their needs still be met with a newborn/toddler in the home?
  • Consider the risks – for you and for your child
  • Does your family feel complete?  (A friend asked this question of me and I knew immediately that we had to at least try for one more).
  • How does it make you feel to possibly not have any more children?  Can you accept that possibility?  (When I thought we were not having another child, I was heartbroken.  I took that as another sign that Jack needed a sibling.)
  • Meet with your doctor and your child’s doctors.  What are their thoughts/opinions? (I remember Jack’s pulmonologist telling us to at least wait until he was two years old before we started thinking of adding to the family)
  • Could you handle another child with medical complexities?
  • Do you have a support system in place to help with two (or more) children?

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Originally published: May 2, 2014
Showing 2 comments
  • Lee
    Reply to LeeComment ID#: 77371

    Thank you for writing this!! I have a 15 month old son who was born early with medical complications (a nicu stay and open heart surgery at 11 weeks old) and I am now 4 months pregnant with our second child. I don’t even know how to parent a child without an NG tube and medication schedule and it makes me anxious! I’m so happy that you have the wonderful family you wanted and your article made me feel a bit better. Best of luck with your beautiful kiddos!!

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