Justin is 6: Remember Me Preemie

6 years ago our first born made his entrance into the world 15 1/2 weeks early.  Keeping with tradition, here are pictures of Justin with his Remember Me Preemie doll.

March for Babies

On Sunday, April 27th, Team Love Jonez walked in our 3rd March for Babies.  Thanks to the generosity of friends and family we raised just over $900 in our quest to ensure that all babies are born healthy.  We're still waiting to find out where we placed in terms of team donations; last year we were 4th so we shall see.

March for Babies

It’s that time of year again; the Jones Family will be walking in our 3^rd March for Babies on Sunday, April 27^th.  As the parents of two preemies, Justin, our 24 week miracle and Nathan, our 35 week wonder, this is something that is obviously near and dear to our hearts.  Before having the boys, we simply thought of a preemie as a small baby, not realizing all the difficulties that preemies, let alone micro preemies like Justin, may face.  Little did we know we’d be catapulted into preemie land: oxygen, ROP, reflux, developmental assessments, physical & occupational therapy and the list goes on and on.  Just recently Justin was diagnosed with a cognitive impairment and will spend his kindergarten year in a special education program.  Whether or not that can be attributed to his prematurity we’ll never know.  But I’m reaching out to you guys because you’ve been with us from the beginning and know firsthand what we’ve dealt with the last 5 ½ years.  So if it fits into your charitable giving this year, please consider donating to Team Love Jonez in our quest to ensure that all babies are born healthy.  

You can make a donation on my personal page by clicking HERE.

World Prematurity Day

Today is World Prematurity Day, a day to remember, honor and celebrate special babies.  Those who have followed our story from the beginning are well aware of the struggles we've faced with Justin's early arrival. And although we've been very fortunate and Justin is doing considerably well for a 24 weeker, we're still dealing with issues from his prematurity.  So today, well especially today, I celebrate my 24 week miracle and 35 week wonder AND I remember TBA.  Below is the video I made to celebrate J's 1st birthday; it brings back a lot of memories and reminds me just how far we've come. 

Justin is 5: Remember Me Preemie

5 years ago our first born made his entrance into the world 15 1/2 weeks early.  Keeping with tradition, here are pictures of Justin with his Remember Me Preemie doll. 

 

Below are links to pictures of Justin with his Remember Me Preemie doll from each of his birthdays so far:
Age 1, Age 2, Age 3, Age 4

March for Babies 2013

On April 29th we walked in our second annual March for Babies, even though the weather was crappy.  Team Love Jonez raised $820 and was #4 in money raised for family teams at our walk site.  Next year I'm raising my goal to $1,000. 

March for Babies

Carl and I know all too well the challenges associated with prematurity. That’s why we have formed a Family Team, Team LoveJonez, to raise money and participate in March for Babies to support the March of Dimes mission to prevent birth defects, premature birth and infant mortality. By raising money, ongoing research to answer the critical questions of why premature birth happens and what can be done to prevent it is funded. When you support Team LoveJonez, you show you care and you give hope for defeating premature birth and other threats to babies.

Carl and I, along with the boys,will be walking in our 2nd March For Babies on Sunday, April 28th at Wayne State University.  Like last year, we're walking not only in honor of our two miracle preemies but also in memory of TBA.  We would love if our family and friends joined us.  If you would like to join our team or make a donation, please visit our team page at Team LoveJonez.

Our 24 week miracle! 

Our 35 week wonder!

World Prematurity Day

Today is World Prematurity Day, a day to remember, honor and celebrate special babies.  Those who have followed our story from the beginning are well aware of the struggles we've faced with Justin's early arrival. And although we've been very fortunate and Justin is doing considerably well for a 24 weeker, we're still dealing with issues from his prematurity.  So today, well especially today, I celebrate my 24 week miracle and 35 week wonder AND I remember TBA.  Please visit the March of Dimes website to learn about ways to help fight prematurity.

NICU Reunion

Saturday we went to Justin's NICU reunion.  Unfortunately J was in a mood; outside of being excited while riding the train he had a pretty funky attitude towards the nurses and Dr's.  And I was sad that we didn't get to see his primary care nurse Rosette.  But since we missed last year because J and I were sick it was nice to catch up with nurse Charlotte who was training with Rosette when J was born, along with the Dr's and other nurses who lovingly cared for J during his LONG NICU stay. 

Justin is 4: Remember Me Preemie

Time is really flying by; can you believe that 4 years ago our 24 week miracle was born?  Keeping with tradition, here are pictures of Justin with his Remember Me Preemie doll.  This year Justin actually tolerated taking pictures with the doll and kept calling it baby. 

Here are pictures of Justin with his doll from each birthday:
Age 1
Age 2
Age 3

March for Babies 2012

Yesterday we walked in our first March for Babies. We had great weather, a great turnout from family (my sisters, dad, step-mom and in-laws) and Team Love Jonez raised over $800 for stronger healthier babies. Donations will be accepted until May 31st for anyone who still wants to donate to our team and give all babies the chance at a healthy start. We will definitely be doing the walk next year and for many more years to come.

March For Babies

After almost 4 years Carl and I, along with the boys,will be walking in our first March For Babies on Sunday, April 29th at Wayne State University. While we've donated to the March of Dimes every year since Justin's birth we've never been that proactive in spreading the word about the March of Dimes. I thought about participating in the walk the year after Justin was born, but after talking to a few family members who didn't show much interest in walking with me I let it go. Right or wrong, I felt like I didn't have their support and I let that deter me.  Or perhaps I let it go because I was in survival mode dealing with countless therapy sessions, Dr's appointments, surgeries, reflux, eating issues, weight gain, etc. But regardless of the reason, this year is different.

A friend of both Carl and I delivered her daughter at 27 weeks. Her Dr's were concerned she would deliver early so she reached out to me during her pregnancy seeking advice on what to expect, how to deal with the NICU roller coaster and just having a preemie in general. 

Last month a friend lost her child due to pregnancy complications. When I got the email I cried and stared at the screen for what seemed like hours; I had to have Carl explain to me what I was reading. I mean, I knew what I had just read but my heart wouldn't let me fully comprehend it.

And just recently, I learned that another friend is at risk of her loosing her baby due to pregnancy complications. 

So this year we're walking not only in honor of our two miracle preemies but also in memory of TBA. I would love if our family and friends joined us but if not, this year I'm doing this because it's something I have to do for me.  If you would like to join our team or make a donation, please visit our team page at http://www.marchforbabies.org/team/t1856403

World Prematurity Day

In the United States, 1 in 8 babies is born prematurely. Worldwide, 13 million babies are born too soon each year. Unfortunately our boys are part of that statistic. Those who have followed us from the beginning are well aware of the struggles we've faced with having a micro and late term preemie. So please visit the March of Dimes to learn more about ways you can help reduce premature births.

Happy 3rd B-Day Justin

Time is flying by, can you believe our 24 week miracle is 3 years old?  Keeping with tradition, here are pictues of him next to his Remember Me Preemie doll. 

Speech Evaluation

I was starting to feel really good about where Justin was developmentally but J had his speech evaluation last week and he was diagnosed with a moderate to severe expressive and receptive speech delay.  So when the speech pathologist told me that J has a 6-12 month speech delay I felt like a complete failure.  His expressive language (use of language) is between the 18-21 month range and his receptive language (understanding of language) is between the 21-24 month range. And since preemies should be caught up by the age of 2 his evaluation was based on his actual age of 30 months and not adjusted for his prematurity.

Between 24 – 30 months Justin should be able to do the items below and I highlighted the things he's currently doing:

• Imitate 2-3 word phrases
• Begin combining words into simple sentences (i.e. go bye-bye, more cookie, no nigh-nigh)
• Speak more and more new words each week
• Use 50 or more words
• Change intonation to ask questions (i.e. cookie?, mine?)
• Understand size concepts (big & little) and number concepts (one)
• Understand action words
• Point to most body parts
• Use most toys appropriately in play
• Speak clearly enough for people to understand him most of the time
• Use words with many different consonant sounds
• Follow two-part requests (i.e. please take off your boots and put them on the shelf)
• Know a word for almost everything he wants to say or identify and ask for or indicate objects verbally

So if you were to grade J on the above he’d obviously fail; 7 out of 13 (54%) isn't even close to acceptable.  And you all know me by now; this of course freaks me out so I discussed my concerns with J's Early Intervention teacher.  Since she sees J on a weekly basis I felt she'd have a better feel for where J is developmentally versus someone who evaluated J after only 45 minutes of observation.   In short, she does believe there is some speech delay but no where near where the speech pathologist put him.  And since he has a rich home environment, where he is being exposed to language on a regular basis, she didn't feel there was a need to rush into therapy.  She also mentioned that J will get a thorough speech evaluation during his year-end review.  So that made me feel better.  I'm also going to talk to my boss' daughter who is currently working on her master's in speech pathology to get a 3rd opinion. 

In the meantime I’m going to try and relax, look at the positives and work on the things the therapist suggested.

Positives

 - J has good social/communication skills and makes meaningful eye contact

 - J can properly use objects (i.e. uses a brush to brush his hair, feeds himself, stacks blocks)
 - J knows his ABCs & 123s
 - J understands and completes requests upon demand (i.e. step back, don’t touch, clean up)
 - J identifies/recognizes pictures in books
Items To Work On
 - Imitate or match J's sounds, words and actions
 - Label what J sees, does, and hears with sounds and words
 - Use short, simple words and phrases
 - Repeat, repeat, repeat
 - Wait, wait, wait (pause & count to 5 before saying/doing something else to give J a chance to figure it out)
 - Tempt J to talk (i.e. put a desired item in sight but out of reach, create minor obstacles)

Denial

Okay, so I'm still coming to grips with the fact that Nathan is bigger than Justin  The rational part of me says "just get over it already; he's doing great (all things considered)".  But the emotional part of me is bummed that my 10 month old is bigger than my 2 1/2 year old.  I mean, that's just not normal.  But that's the issue; nothing about this is normal at this point and you'd think I'd realize that by now.  But no, instead I'm in denial. 

I'm in denial that Nathan no longer fits in his infant carrier.  I bought him a convertible car seat last week BUT I haven't brought myself to put it in the car yet.  Never mind the fact that it's really too tight for him and as a result it takes way too much time to snap him into the car seat. 

I'm in denial that Nathan is wearing size 5 diapers.  I bought them BUT they've been sitting in the box.  And even when Carlene opened them up and started using them I went out of my way to use/find size 4 diapers. 

I'm in denial that Nathan needs to be bumped up completely to 18 months.  I can't handle my boys wearing the same size so I'm bumping Justin up to 24 months. 

I know this probably all sounds crazy and I know many of you will tell me it'll be alright.  And rationally, I know it will.  But there's no telling a mom of a micro preemie that it'll be alright and her actually listening.  I'll come to that realization on my own, hopefully soon. 

SIDE NOTE:  Why am I crying as I re-read this post?  I guess unless you're a mom of a preemie you'll never really fully understand. 

National Prematurity Awareness Day

As the mom of two preemies, one micro preemie and one late term preemie, I'm ashamed to admit that I haven't been very proactive in putting out the word about ways to help fight prematurity. Those who have followed our story from the beginning are well aware of the struggles we've faced with Justin's early arrival. And although we've been very fortunate and Justin is doing remarkably well for a 24 weeker, we're still dealing with issues from his prematurity.

That being said, today is prematurity awareness day, a day to remember, honor and celebrate special babies. So please give what you can so that the March of Dimes can continue the research and programs that may one day prevent premature birth.

DAC Appointment

Weight: 23.2 lbs, less than 5th percentile
Length: 31.5 inches, less than 5th percentile

Thursday Justin had an appointment with the DAC (Developmental Assessment Clinic) which is run by the neonatologists at the hospital where he was born. They were responsible for all of his medications, oxygen, nebulizer treatments, etc. so needless to say he had frequent visits after he was discharged from the NICU. They also monitor his developmental progress, thus the name, lol.

But I was pretty nervous about this appointment. Even though I think J has made great strides (all things considered) and seems to be on track developmentally I was worried about what the Dr's would say. Sure I can tell them all the things he's doing, but of course there are some things I may forget. And it's hard to get a full picture of where a child is developmentally just from an hour long appointment. And obviously there's the issue of his size and weight gain.

The occupational therapist evaluated Justin first and J did great. He stacked blocks upon request and then had a ball putting various sized pegs in the right holes. When the OT put it away he walked over to the OT's bag and pulled it back out. He was able to put shapes in the proper spots and called out each shape as he did it, except for triangle which he can't say. He got upset when the OT switched sides and sizes on him to see if he could put smaller shapes in the correct spots. Of course we all know how much J loves balls so when the OT brought one out he smiled and ran towards him yelling ball.

Then Dr. E and Elaine, one of the nurse practitioner's, came in and examined J. We discussed the OT's assessment. Overall J's doing pretty well, he's excelling in some areas but is behind in others (i.e. does not throw or kick balls, use 2 or 3 words together or ask for items by name). Since he still sees a Special Education teacher through the Early On Program they weren't concerned about his gross motor skills and cognitive learning. But they'd like him to get a speech evaluation, so I scheduled an appointment for the 1st week in December.

Diet wise Dr. E was happy. He asked about his activity/energy level and when I told him how active J is he said that's a good sign because kids who aren't getting what they need nutritionally would be lethargic and non-responsive. And although J is small for his age I FINALLY got someone to say "yes, he's small, but now we look to genetics". That being said we have a GI appointment Friday so we'll see what she says, but it should be good. J's eating has improved tremendously and he's gained 3 lbs since his last appointment a month and a half ago.

Here are some pictures while we waited to be seen. J loved scribbling on paper with Grandpa Smitty's pen. I think J may be left handed like me but he kept switching hands when he was writing so we'll see.

Home on bedrest

After 5 days in the hospital I'm finally home. I'm still having contractions but since I'm not dilated and my cervix is still long and closed they sent me home on medication to help control the contractions and put me on bedrest for the rest of the pregnancy. The next 5-6 weeks will be tough but at least I'm home, I missed Justin.

Admitted to Hospital at 31w, 5d

I felt uncomfortable when I woke up yesterday morning, but no more than usual. But when I got to work I was feeling even more uncomfortable, so my boss offered to drive me home. I called my dr. and they told me to come in to get checked out. But they didn't notice anything so they sent me to the Hospital for monitoring. As it turns out, I'm contracting, so they started me on magnesium sulfate (what fun). I can't eat or get out of bed for 24 hours while on this, BUT, it does seem to be helping the contractions. Things were pretty quiet overnight, but I had a few this morning and now they've subsided again. I also got my first steroid shot yesterday. Initially they thought they were going to have to deliver me early and then decided to try and stop the labor/contractions. I'm due for my second steroid shot around 2pm, around the same time the magnesium stops. At that time they'll evaluate if I need to continue on the magnesium or if they can switch me to something else. At any rate, I'm not going home today. Even if they're able to stop the contractions/labor they'll transfer me to the antepartum unit for a few days before they send me home. Looks like bed rest for me from here on out.