Thursday, May 1, 2014

7 things I didn't know about preemies...until I had two


This guest post, in honor of Parents of Preemies Day on Sunday, May 4, is by Laura B. Martin of Joseph at Home. It's a day created to honor parents for their courage and strength. Laura is the NICU ambassador director for Graham's Foundation, founded by parents of preemies to support parents of preemies. A former middle school teacher, Laura is the mother of Joseph, Campbell and Emily. She and her husband, Scott, live in Georgia.

A couple of weeks ago, I was making allergy-friendly cookies for my four-year-old, Joseph, to take to a birthday party. Joseph sat at the kitchen table eating a snack while I gathered the ingredients from the pantry. As I organized them on the counter, he jumped out of his chair. “Me hep oo Mommy! Me hep oo Mommy,” he said as he ran across the kitchen with his arms outstretched for me to pick him up.

Tears formed. Joseph had just expressed a desire. He wanted to help me make cookies. The countless hours of practice and inputting language into his minddadad was coming to fruition. He could finally tell me what he wanted to do. We spent the next hour making delicious cookies he could enjoy at the birthday party.

Joseph has been in intensive listening and spoken language therapies since he was an infant. His hard work and determination are nothing short of amazing—just one of many realizations I've had along my preemie journey.

Until I had preemies I never knew that...

1. In the United States, prematurity affects 1 out of 8 infants. 

I never thought prematurity would happen to me—it was something that happened to other people. I thought you had to do something wrong for prematurity to happen. I did everything I was supposed to during my pregnancy: I went to all of my prenatal appointments. I took my vitamins. I ate healthy. I exercised. Despite doing everything exactly right, I was affected by prematurity. Our children were affected by prematurity and will forever be affected by prematurity. We are part of the statistic.

2. Preemies can survive.

Before I had my boys, I can remember hearing people say they were born six weeks early and thinking, How is it possible to survive? I was extremely nervous when I was told our twins may come five or six weeks early. Joseph and Campbell were born at 24 weeks gestation. While in labor, a NICU nurse gave us all of the statistics. There was a less than 50 percent chance of survival. If they lived, they could, and probably would, have severe disabilities. There was a very good possibility they wouldn't even survive the delivery; they would be in the NICU until their due date. Their quality of life would be poor. The statistics were not good for our boys. Campbell died at 23 days; Joseph is a survivor. 

Joseph in the NICU

3. Not only can preemies survive—they can thrive.

Joseph spent 228 days in the NICU before coming home. Although he has a myriad of health complications as a result of his prematurity (hearing loss, vision impairment, hypotonic cerebral palsy, short bowel syndrome, asthma, multiple food allergies, and more), Joseph is thriving. There were many days during our NICU journey that I wasn’t sure we would see Joseph’s first birthday. We almost lost him more times than I can count. We were told that Joseph may never walk, talk, eat and that there would be many things he couldn’t do. He has defied odds. He has proven doctors wrong. He continues to prove people wrong.  

4. Preemies are fighters.

Two days before Joseph was slated to come home from the NICU, at age five and a half months, he developed Necrotizing Enterocolitis (NEC). Joseph was sent into emergency surgery to see if there was any salvageable intestine. As they were taking him to surgery, we were told to say our "goodbyes" as there was a very good chance we would not see him again. The surgeon came to talk to us during surgery. He was able to salvage 41 cm of Joseph’s small intestine. Because it was such a small amount, the surgeon gave us the option of closing him up and letting him go. Absolutely not. No way. Joseph is a fighter and we knew he had the fight in him. He still fights hard to make the absolute most of every day.

Campbell, too, fought so hard for life in his short 23 days on earth. Does it mean he was weak? No. His little body just wasn’t strong enough to fight the incredibe challenges of prematurity that were before him. While his body wasn’t strong enough to live, his spirit will always live on. I miss him more than words can say.

I have met so many amazing families who lost their child to prematurity. Some lived just minutes, and some lived almost a year. Their children are fighters and will always be remembered.

5. No two preemies are the same.

Just as each person takes a different path in the life, no two preemies are the same. There is no set path for a preemie to take. They create their own. As a mom to a son born at 24 weeks, I have seen babies born at 24 weeks have absolutely no health complications. I have seen 24-week babies not survive (like my son, Campbell). I have watched Joseph overcome so many obstacles yet still have so many struggles as a result of his premature birth. Parents are often told to expect to come home around the due date. Some come home well before this day, some come home right near the due date, and others stay in the NICU months past their due date. Every preemie is different. 

6. Prematurity emotionally impacts a person forever.

I have had the following conversation with preemie parents more times than I can count (after talking about how wonderful our children are):

Parent: "How long were you in the NICU?"
Me: "Campbell died after 23 days. Joseph spent 228 days in the NICU. How about you?"
Parent: "We were only in for 10 days but that’s nothing compared to you."

It’s not a competition who spent the longest in the NICU. Any time spent in the NICU is too long—whether it’s one day, ten days, a hundred days or 300 hundred days. The pain of having to leave your child in the hospital stays with you forever. No one ever dreams they will have to come home without their baby. The pain and heartache of visiting your child day after day and leaving them in the hospital stays with you. It is a feeling you never forget.

Prematurity affects your emotional relationships and friendships. Once you become the parent of a preemie, your life is never the same. You learn to appreciate life just a little more.

Laura and Joseph today

7. Preemies are miracles.

Whether born at 24 weeks or 36 weeks, all preemies are miracles. They came before their time and defy odds. As parents, we watch them grow under the watchful eyes of doctors, nurses, and therapists. We celebrate every milestone, no matter how big or small. Making it through the night with no apnea episodes is as exciting as the first day of school. Taking a bottle for the first time is cause for celebration. Changing a diaper for the first time is more exciting that ever imagined. Life becomes a little sweeter watching a preemie overcome the odds.

29 comments:

  1. Thank you as a 28-weeker now 16 years old.

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  2. My little man was born at 34 weeks and was 3 lbs and 10 oz he didn't spend anytime in the NICU but that's because the hospital I had him in had a step up nursery not quite NICU and not quite a regular nursey! We spent 12 days in a roller coaster of test and threats of blood transfusions! Though my little man wasn't in the NICU I know what it's like to have to leave your baby and not know when I would be able to bring him home. He's now 16 months old and is a small dude but is thriving! This past weekend we walked with the March of Dimes that one day all babies will be born healthy and the ones born early with have a better chance of surviving! Thanks for sharing your story!!

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    1. I am so glad to hear he is doing well! Loved reading your story.

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  3. Wow! This touched my heart. I was born a premie at 1lb 6oz. Lucky for me I was one of the survivors with only minor health problems. Asthma, vision, migraines and a very soft voice due to my vocal cords not being developed. I'm happy to say that I have pretty much had a good and healthy life. And I am 28 and expecting my first child. I'm currently 28 weeks pregnant. And one of my biggest fear is early delivery. This has given me hope and a few tears. Lol

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    1. Wow!! So encouraging to hear how well you have done. Sending lots of positive thoughts for a healthy and full term delivery!

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    2. This brought tears to my eyes. My son was born at 28 weeks and weighed only 1lb 4oz. He's been in the NICU since 03/01/14 but he now weighs 2lb 15oz and is doing good. After having a bad infection and problems with his intestines just one month ago when we thought he wouldn't make it I'm excited that he is doing way better. Feeds are bolos (not sure how to spell) 25mL over 2 hrs, he poops regularly and he has even latched on my boob a couple times.

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  4. FYI any babies born at or after 36 weeks technically are not preemies. I'm shocked you dont know that.

    My sons were born at 39 weeks 5 days so they were full term babies who are now almost 2 years old. Noah has moderate spastic diplegia (we still arent sure why). I got to bring them home 2 days after birth. He was diagnosed at birth with this type of cerebral palsy. Jonathan is a typical baby boy without special needs.

    I was not told Noah would not talk eat only that he may not walk alone. He uses a power wheelchair and a walker when we're out in public. Noah still amazes me today. The first time they babbled, I managed to film it. I celebrate all of their milestones. Noah has taught me some lessons about life and I no longer take things for granted.

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    1. Your first statement is not necessary, and brings unneccesary negatively and condescension to this overwhelmingly positive post.

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    2. So glad you were able to capture it on film!!! Children are wonderful at teaching lessons in life. Love celebrating milestones - no matter how large or small!

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    3. Actually the most current definition of a full term baby is one that is at least 39 weeks. 36 weeks being full term is old information. Anyone born before 39 weeks is premature. "I'm shocked you don't know that"

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    4. Actually the most current definition of a full term baby is one that is at least 39 weeks. 36 weeks being full term is old information. Anyone born before 39 weeks is premature. "I'm shocked you don't know that"

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  5. What an amazing post! Thanks for sharing. My daughter was born at 35 weeks and being in that NICU was very sombering. We were very blesses to be able to get out of their fast. It takes an amazing amount of strength to have a preemie.

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    1. It takes such strength! Happy Parents of Preemies day to you!

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  6. What an amazing post! Thanks for sharing. My daughter was born at 35 weeks and being in that NICU was very sombering. We were very blesses to be able to get out of their fast. It takes an amazing amount of strength to have a preemie.

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  7. My 35 seeker was 3lbs 2oz and stayed a month in hospital, and is fine now. Excellent post.

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    1. I am so glad they are doing well! Thanks for reading. Happy Parents of Preemies Day to you!

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  8. My daughter was born at 25 weeks, 1 lb, 12 oz. This was after losing our first baby who was stillborn. She has gone through more than I ever dreamed possible and taken us along on the ride. She's my miracle child over and over, my hero. She's 29 now and will always require assistance. Most days I'm up for it but some days...well, it's tiring and never ending. Better go eat my Wheaties.

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    1. So sorry to hear about the loss of your first child. Thinking of you as we honor parents on Parents of Preemies Day this Sunday.

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  9. Lovely, informative post! My fifth baby was born 5 weeks early, weighed less the 4.5 pounds, and stayed in the NICU for a week. Those first weeks after taking him home are a blur of every two-hour feedings from tiny bottles to ensure how much he ate. At his 3-week checkup, he was now 6 pounds and I was given the green light to breast feed. What a blessing! At 3-4 months of age, I could tell things were not quite normal as far as his eyes and muscle control. At 10 months, he was diagnosed with spastic quadraplegic cerebral palsy. He is now almost 28 years old and has been in an electric wheelchair since he was 5. Years of therapies, several operations, and tons of special ed meetings to get him thru High School. Kudos to all you moms out there who care for and love these special children!

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    1. Kudos to you!! Happy Parents of Preemies Day to you!!

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  10. I didn't realize that there was a whole day made just for preemies, I had a little baby girl who was born at 26wks she weighed 1lb 15oz 13 1/2 in long and we spent 61 days in the hospital Cox South in Springfield Mo. As far as stays go it was a wonderful in spite of the circumstances we were there. I had never seen such a tiny thing in my whole life and I would have never imagined that she would survive to grow into the amazing young lady that she has turned into. She really had minimum effects she wears glasses and she little. She is 16 about to be seventeen is on the honor roll a cheerleader since pee wee and she has a really great outlook on life. I was blessed to have such a wonderful life brought to me and it still is hard to believe that she was such a small little peanut that fit in the palm of your hand. I wear a size 7 in a ring and we put it completely over her hand and up her arm like a bangle bracelet. We were able to stay at the Ronald McDonald house the whole time she was in the hospital and Children's Miracle Network paid for the entire stay in the hospital and our stay at the house. Every one was very nice to us. To all the families out there that experience similar situations just know that modern medicine is a wonderful thing and miracles truly happen every day.

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    1. How inspirational - thank you for sharing!! Happy Parents of Preemies day to you!!

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  11. I have wanted to write something similar, so thank you for writing this. I had a 26w5d 1 lb 15 oz and a 31w2d 4 lb. We spent a total of 101 days in the NICU. I think I am so completely changed that I wouldn't recognize myself. My heart aches from the experiences we have had. Thanks again!

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    1. Thank you for reading! Happy Parents of Preemies Day to you!!

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Thanks for sharing!



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