Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Saturday, September 21, 2013

Pregnancy after Preeclampsia & Prematurity

Our little family at a beach wedding last weekend.

I’ve kept my feelings, thoughts, and fears to myself for the first 19 weeks of this pregnancy.  But I realized that it’s just too hard to keep them in at times.  I was excited about being pregnant for about 24 hours…and then the anxiety and stomach-clenching fear kicked in.  And no, it’s not because I watched a dramatic episode of A Baby Story or a Lifetime movie.  It’s because I survived my first pregnancy.  That’s right.  SURVIVED.  And not in the sleepless nights, poopy diaper, non-stop crying newborn type of survival.  The type of survival that involved life-threatening conditions for both me and my first-born son.  It never occurred to me that I would have to think of pregnancy and survival.  In fact, I didn’t think of it with my first pregnancy (Jack), until I distinctly heard, “It’s possibly we may not be able to save them both.”  So yeah, I’m trying to remain positive, because that’s what I’m “supposed” to do.  But it’s hard…for this very pregnancy, that we are so blessed to experience, is also the very thing that could threaten my life or that of our second-born.  I think the problem stems from statistics.  Before Jack, I heard statistics concerning many pregnancy-related issues, but the numbers were so low…they couldn’t happen to me.  Until it did happen.  Preeclampsia happened.  Prematurity happened (and is still happening).  So, yeah, positivity is tough.  But I work on it every day.  When I feel what might be the first movements of Baby Lesoine.  Or when we talk about baby names.  And especially when I think of Jack having a sibling.  I also choose to be realistic.  Because being realistic is SO much better handled than having your world rocked by preeclampsia and prematurity. 
So here is what I feel safe sharing:

  • I met with 4 different maternal-fetal specialists before even thinking of getting pregnant again.  I wanted to be sure I knew all the risks and to be sure I found a doctor who made me comfortable  and had a plan, if we ever were to become pregnant again.  I found him.  Dr. John Repke.  

  • During my first pre-natal visit at 11 weeks, I broke down. Sobbed.  When they attempted to take my blood pressure.  I was so afraid that it was just the start of many pregnancy problems to come.  Dr. Repke treated me with compassion, but didn’t downplay my fears.  He just said, “We will have to take this pregnancy week by week, or day by day, if necessary.”  So far, the problems have been minimal.     

  • You won’t hear me say, “As long as he or she is healthy.”  Jack was not healthy.  We love him.  We kept him.  We wanted him, healthy or not. 

  • You might hear me say that I’d prefer a girl.  Not because I’d like one of each gender.  And not because I’ve always wanted a little girl to dress up and have tea parties.  Because baby girls typically do better when born prematurely.  It’s that simple.  For me. 

  • I’m not ignoring my pregnant state, but I am constantly focusing on the end result I hope for…a full-term baby to hold after birth and take home 2 days later.   If that result doesn’t become reality, I do know that we will be okay.   

  • I often fear that this pregnancy will kill me.  I mean that literally.  (Understand that I am very, very cognizant of the symptoms and warning signs.  But I also know, sometimes there are no warnings.) 

  • I worry A LOT about leaving Jack without a mother.    

  • I oscillate between believing this baby will be born close to his or her due date and believing that this baby will be born even earlier than Jack.  I can’t seem to visualize anything in between. 

  • I, selfishly, would like to have another baby shower and be pregnant this time.  I told my sister and best friend that they should plan early this time…just in case.

  • I have a hospital bag already packed.  Last time, I threw a clean pair of underwear in my purse and that was it.  I need to be as prepared as I can this time.  Packing a hospital bag is something I can control. 

  • My blood pressure is super stable.  On the low side, in fact, with the lowest dose of Labetalol.  Dr. Repke says it’s probably not even affecting my BP, but I’ll stay on the med.  Control.  See?

  • I want to have a baby name picked ASAP.  With Jack, we had some ideas but then had to make a sudden decision.  I don’t want to do that again.  Although, I think Jack Ryan is an awesome name and perfect for him. 

  • I have lost 12 pounds so far in this pregnancy.  First, from being nauseous and having heartburn.  Now from a carb-limited diet due to gestational diabetes…which is also well controlled by diet.  Dr. Repke says he’d much rather we deal with G.D. than preeclampsia.  I concur. 

  • I rarely worry about what it will be like to have 2 children.  I think I will be so relieved to have survived again.  Perspective, huh?

  • It makes me laugh when people ask when I am due.  My goal is to get past Christmas (33-34 weeks) and even then, I know it’s not ideal for baby…but it has to better than 28 weeks, right?  Right? 

  • I’m afraid to ask Dr. Repke if 33-34 weeks is even a realistic goal for this pregnancy. 

  • I feel a big sense of relief, knowing that I will never be pregnant again (our choice) and never be in this specific anxiety-ridden phase of life again.  I know there will be other tough times.  But never this specific time again.  Relief.  Sweet relief. 

  • Once you or your child becomes a statistic, you begin to wonder what other statistics may be in your future.  (Preeclampsia affects 5-8% of pregnancies.  One in 8 babies is born premature.)

  • I know that each pregnancy is different.  This one has been different so far.  But my body is still the same.  That’s what scares me. 

  • After I found out I was pregnant, one of my first thoughts was about how Jack would be okay with his grandmas during the day, while I was at the NICU with the baby.  To someone who has never experienced NICU or prematurity, this may sound odd.  But when your first and only experience with pregnancy and parenting started with prematurity and a NICU stay, it forever affects your perceptions and expectations.  It’s what I know.  The other option (full-term, take-home baby) would actually feel “foreign” to me now. 

  • I’m really looking forward to experiencing the third trimester.  I welcome the back pain, heartburn and whatever else it entails.  If it means my baby’s lungs and brain have more time to develop, I will suffer.  With Jack, I had only stepped foot into the third trimester and it “ended” rather abruptly from a baby in my belly to a tiny.tiny human being in a plastic box and tube down his throat, with a machine keeping him alive.

  • I am totally okay with the way I feel about this pregnancy.  I believe that it’s completely normal for me to feel the way I do, considering our recent experience with Jack.  I have learned that we cannot have joy without sorrow or pain.  The sorrow makes the joy that much sweeter to experience.

  • I’m super excited to find out the gender next Friday! 

Please know that I’m happy to be a mom of two in a few months.  It’s a cautious kind of happy, but happy nonetheless.  I’m glad to talk about all things related to parenthood and pregnancy.  But, please don’t diminish my completely valid fears and concerns.  That’s not too much to ask, right?  I hope, if you ever need the same, I can do this for you (no matter the situation). 

Thanks for allowing me to share.

Yeah, this happened.  1st day of preschool.  I still can't believe this happened.

Tuesday, September 3, 2013

IEP at Three

Three years ago, Jack was just three weeks old and struggling each day to breathe, to develop outside the womb, to survive.  We were given statistics about outcomes for a 28-weeker, and being the realist that I am, I took them to heart.  Each parent responds to this information differently.  Jeff chose to believe that everything would be fine.  I, on the other hand, spending day in and out in the NICU, watching Jack stop breathing and turn blue, couldn’t seem to forget that just hours before his birth we had to discuss survival rates.  Once you have that conversation, you might push it to the back of your mind, but it’s always there.  And for me, it has changed my life in many ways.  I will always remember those moments, those days.  They often affect the decisions I make.  They keep me from losing my patience and allow me to live in the moment with Jack as much as possible.  But, if I’m being honest, if you told me three years ago that Jack would be the boy he is today, the realist (some say pessimist) in me would never believe you.  While were in the NICU, I couldn't see past the NICU.  However, those days in the NICU have since taught me the importance of both living in the moment, each day, and also looking toward the future. 
Jack, three years ago.  (9.3.10)
     Who is Jack today?  Jack is smart.  S.M.A.R.T. smart!  I know it, but each time a certain phrase comes out of his mouth or he answer a question about something that I had no idea he knew…blows me away.  Jack is silly.  Just this summer he told me his first joke (although I’m not sure he realized it yet)!  He loves to laugh and is starting to develop a great sense of humor.  Jack is energetic.  This boy is on the move all day long.  From playing with trucks, to running outside, to “cooking” in his kitchen.   You’d never know he is still considered to have “chronic lung disease.” Jack is brave.  He loves water slides and walking on top of walls.  I can’t think of a time when I sensed fear in him.  Jack is all these things and so much more.   Jack is everything Jack is supposed to be.  There’s a lot of pressure in the preemie world for kids to catch up and be just like their full-term peers.  I fell into that trap early on in this journey, but have since learned that, obviously, no two kids are alike.  Nor do they meet milestones at the same rate.   
Jack, at his 3rd birthday party. (8.2013)
     For that reason, Jack has an IEP (Individualized EducationPlan) at three and is officially diagnosed with a speech and language impairment.   Basically, for his age, he does not speak or use language at the same level as other three-year-olds.  In addition to his speech issues, he shows delays in fine and gross motor skills.  Since his discharge, Jack has had therapies from Early Intervention – Occupational, Physical, and Speech - to work on these delays.  These professionals came into our home to support Jack in his development and helped us look out for any delays he might encounter as he grew.  Part of me believed that by age 3, Jack would no longer need these services.  But, another part of me also believes that he is meant to reach the milestones at his own rate (mostly because of his prematurity) and no amount of therapy will make that happen faster.  That being said, the therapies he does receive are supportive and fun, for Jack.  Yet, no parent wants to hear how behind their child is or how their child needs to work harder to do things that other kids just do, which is a big part of the IEP process.  However, I also would have been deeply disappointed had he not qualified.  He has had so much support the last three years, I didn’t want him to lose any of the progress he has made.  I also hope that Jack might get all the services he needs now and then might not need them once he enters Kindergarten.  We’ll see.  At age 3, services transfer from Early Intervention to the local school district, so Jack will receive services outside the home (at an education center) and at pre-school.  (More on pre-school next time!)  I know, when looking at Jack, these delays aren’t always obvious, which often makes people wonder why he needs these services.  It all stems from prematurity, believe it or not.  When babies are born early, all the muscle movements and brain development that normally occurs in the womb is suddenly interrupted and then expected to develop in less than ideal circumstances (harsh, loud, bright NICU environment).  For example, at age three, Jack still does not jump.  One might think, “Does it really matter if he never jumps?”  Maybe not…but what does matter is that his muscles have not developed the ability to do so.  Even though I rarely jump, I can jump and my muscles know how to do that, which in turn help me move in so many other ways.  So, it’s not necessarily the end result or skill that matters, but the muscle (or brain) learning how to do certain things.  Jack also has fine motor issues, which don’t really affect his daily life at the moment.  But, if his fine motor skills don’t develop properly, he could possibly have trouble in school with writing and art class, etc.  So, Jack will begin to receive all three therapies, based on his IEP.  Before Jack was born, I would have been surprised to hear that prematurity would still affect a child at age 3.  As I've mentioned many times, my education in prematurity is constant and continuing.  And again, we choose to respond in a way that best supports Jack, for today and for his future.  I may have not been able to believe what life with Jack would look like at age three back in 2010, but I can predict that I will always choose to recognize that prematurity affects Jack's life and we will do whatever it takes so that Jack does not have to struggle later in life because of his early arrival.