手のひらにすっぽり入った、超未熟児の双子が大きくなるまで。両親が写真で伝える(画像)

まだ小さいけれど、たくさんの物語を持った双子です。

2015年9月23日、マット・ムーアとジョーダン・ムーア夫婦は、双子の男の子と女の子を家族に迎えた。双子は予定日より4カ月早く産まれたため、新生児集中治療室(NICU)で人生最初の3カ月間を過ごさなければならなかった。

この3カ月間は、ムーア夫婦にとって本当につらい時間になった。しかしそのつらい時間を乗り越え、双子は今、自宅ですくすくと成長している。

自分たちと同じように苦しい時を過ごしている親たちに、励ましのメッセージを送りたい。そう考えたマットとジョーダンは、NICUで過ごした3カ月と子供たちが成長していく様子をうつした写真を、Instagramで公開した。

これがその一枚。生後23日目の息子ジャクソンだ。体重は1ポンド8オンス(約680グラム)。父親であるマットの手に、すっぽり入るくらいの大きさだった。


実はこの1週間前、ジャクソンの呼吸が止まり心臓も止まりかける出来事があった。妻のジョーダンがキャプションにこう書いている。

「ジャクソンの小さな小さな体は、静止し灰色になっていました。しかし、NICUのスタッフが、素晴らしい対応をしてくれました。1人の看護師は親指でジャクソンの胸を押し、別の看護師さんが、袋を使って息を吹き込みました。そして、医者がチューブを喉まで差し込みました」

「私は、父親が息子を胸に抱く光景を、もう二度と見ることができなくなるのではないかという不安に襲われました。だけどその一週間後に、私たちはこの写真を撮影することができたのです。生きることの素晴らしさを、心の底から実感しました。そして今、その小さな小さな男の子はエネルギーの塊となり、父親と取っ組み合って遊んでいます。彼は、私たちにとって喜びそのものです」


現在の子育ての様子を、ジョーダンはハフィントンポストUS版にこう語った。

「今は毎日がオリンピックのようです。おむつを取り替えるのに必死です。ジャクソンは強くて、アクティブで、頑固な一面もあります。昔はこんなに小さかったのにと思うと、思わず笑ってしまいますが、本当に素晴らしいことです」

しかし、NICUでの最初の一カ月はとても苦しく「毎日が生きられるかどうかの闘いだった」とマットは語っている。



彼らは、そんなつらい経験を他の親たちには味わって欲しくないと願う一方で、苦しみの中にも素晴らしい面があったことを写真で伝えたいと思っている。

その一つが「子供たちとの強い絆」だ。実は、ジョーダンは重いクローン病を患っていて、その治療が原因で妊娠できなかった。そのためマットとジョーダンは、「受精卵の養子縁組」と代理母を通して、子供たちを授かった。だから「強い絆を築く」ことは、ふたりにとって大きな意味があるものだったという。

受精卵の養子縁組とは、余った受精卵を他の夫婦からもらう制度だ。体外受精をする場合、通常は一度にたくさんの受精卵をつくる。しかし体外受精が成功すると、中には余ってしまう受精卵がある。受精卵の養子縁組では、その余った受精卵を譲り受けて子供を設ける。

「アメリカでは、60万個以上の受精卵が凍結保存されています。体外受精を成功させた夫婦は、余った受精卵をどうするのか、難しい決断を迫られます。費用を払って受精卵を保存し続けることもできますし、廃棄することも、研究に使うために寄付することも、もしくは受精卵の養子縁組として、他の家族に提供することもできます」とジョーダンは話す。



受精卵の養子縁組をした親たちは、大抵は自分で赤ちゃんを産む。しかしクローン病の治療が原因で妊娠できなかったジョーダンは、親友のホリーに代理母をお願いした。

「ホリーとは、産まれたときからずっと一緒です。大人になってからも親友で、お互いの結婚式でそれぞれ花嫁付添人をしました。彼女は私たちの子供とも一生関係のある人です」とハフィントンポストUS版に語った。

息子のジャクソンと娘のキャンディスは、年齢の割に少し身体が小さいという。ジャクソンは近視のために眼鏡をかけていて、肺の病気を抱えるキャンディス、夜の間酸素が必要だ。また、キャンディスはまだ上手く口から食べられないので、チューブを通して栄養をとっている。

それでもふたりは日々大きくなっている。「酸素とチューブはいつか必要なくなるでしょう。ふたりとも、定期的に理学療法や作業療法、言語療法に通い、成長しています」とジョーダンは語った。



マットとジョーダンは、未熟児の赤ちゃんを持つ親たちにこんなメッセージを伝える。

「子供がNICUにいる親の皆さんに、私たちのストーリーを知ることで希望を持って欲しいと思っています。また、お母さんだけじゃなくてお父さんにも『カンガルーケア』と呼ばれる、赤ちゃんを抱いて肌と肌を感じあう育児法の大切さを知って欲しいです」と父親のマットは話す。

「私たちが写真を投稿した理由は、未熟児のいる親や不妊に悩む人たちに希望を持ってもらうため、そして受精卵の養子縁組のことをもっと知ってもらうためです。私たちの経験や、最も苦しかった時間を伝えずに、今私たちがどれほどの喜びを感じているかを知ってもらうことはできません」

マットとジョーダンは、ムーア家の双子の成長記録を、InstagramブログFacebookで公開している。

ハフィントンポストUS版に掲載された記事を翻訳しました。

▼未熟児たちの昔と今(画像集)▼

未熟児たちの昔と今
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Alyssandra at 34 weeks 6 pound 2 oz. Aly is now a rambunctious 2! (credit:Damon Dahlen)
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Sebastian at 33 weeks 5pound 10oz. He is now 4 and has the biggest heart of anyone I know! (credit:Damon Dahlen)
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My 34-weeker on his second day of life and then on his first birthday. (credit:Megan Basore Schratwieser)
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My twins! 1-day-old and now 2 1/2 years old! (credit:Megan Carpenter)
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Nathan was born at 32 weeks and weighed 4lbs 2 oz. Now he is 5 years old. (credit:Janice Gage)
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My Miracle! Born at 29 weeks, 2lbs 7 ounces. She is now a happy healthy 11-year-old ball of fire! (credit:Shelly Jones Gammell)
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My twin beauties born at 33 weeks! (credit:Ashley Pelasky)
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Sierra was born at 35 weeks and was in the NICU for 11 days. She\'s 7 months today and is as amazing as ever! (credit:Dawn Hill)
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My daughter, Ryann was born June 2, 2014 at 28 weeks. She weighed 2 lb 11 oz. She was in NICU for 7 weeks. She is now 5 months and weighs 14 lbs. She is doing fantastic! She has no major health issues. She is truly a blessing! (credit:Robin Spaulding)
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Emma, our amazing micro-preemie; born at 25 weeks, weighed only ONE pound at birth. She\'s now 15.5lb, 9 months and doing GREAT. (credit:Lydia Miller Kennedy)
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My strong, tough twin boys, born at 29 weeks at the University of Michigan. (credit:Laura Hurst)
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This is my son Steven Jacob, he was born at 34 weeks and had a 15-day NICU stay. Went through everything from a CPAP, a Ventilator, a blood transfusion and more, since the day he left the hospital he has been a happy healthy child. I am so grateful for all the NICU doctors and nurses who took such great care of him. I hope one day they find ways to prevent pre-eclampsia (the reason he was a preemie) and help more babies be born full term. (credit:Devon Dwyer)
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My son Eric was born prematurely at 34 weeks. He weighed 5 pounds 10 ounces, so he wasn\'t quite as teeny tiny as many preemies. He spent two weeks in the hospital, mostly due to jaundice issues. We were fortunate he was so healthy. He\'s now 2.5 and thriving. He\'s tall for his age, and most people have no idea he was an early arrival. We\'re thankful for the NICU staff at UMass Memorial Hospital in Worcester, MA! (credit:Jess Hughes)
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My daughter Rasario was born at 33 weeks weighing 4lb 6oz.\n\n\n\n (credit:Trista Cardona)
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Here is my wonderful 2-year-old, Cooper. Cooper was born at 31 weeks due to preterm labor. After 4 weeks in the NICU he was welcomed home and has been thriving ever since. He was born weighing 3lb 9oz and 16 inches long. (credit:Megan Harbison)
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My oldest son was born six weeks premature. I had developed preeclampsia and by 34 weeks, I was admitted into the hospital on bed rest. Two days into my bedrest my water broke I was so nervous about having a preemie!\n\nHe is now 9 years old and an amazing boy! The first picture is him at 4 days old in the NICU, the second picture was taken last week! My husband is in the picture holding him as a preemie... my husband was killed by a drunk driver 5 months ago so this is a bittersweet photo. (credit:Stacy Harker)
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In March 2014 I gave birth to our daughter, Jess, at 26 weeks. She spent 10.5 weeks in neonatal before she was discharged in June 2014. During her time in hospital she required 4 blood transfusions as well as help with her breathing and feeding. Now she is home she is thriving, and is such a happy and content baby. We live in Edinburgh, Scotland. (credit:Sarah Horsburgh)
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My son was born 6 weeks early. Even though he seemed OK on the outside, he was in the highest level of care area of the NICU during his stay. He spent 13 days in the NICU. I waited an entire week for him to open his eyes and look at me. Hayden was born with pneumonia, his PFO was not closing, his lungs were not developed, and he was jaundiced. I got to hold him over a week after his birth, I will always remember the first time he opened his eyes, it was like the best Christmas present. I am happy to report after a first year of late ER runs, Hayden had no long term issues and is a healthy, thriving 5-year-old now. (credit:Jill & Peter Dukes)
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Our twin daughters were born on June 29, 2012, at 31 weeks, each weighing just over 3 pounds. They are now two and doing amazing, thanks to the support and care they received during their 7 1/2 week NICU stay.\n\nHere is a picture of Nora and Kinsey at 6 days old, enjoying kangaroo care with their daddy, and a picture at age 2 (Nora is on the left in both pictures). (credit:Amber Newsom)
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This my my daughter, Hayden. She was born at 31 weeks and 2 lbs 3 oz. She had complications with her heart, a large VSD, hole in her heart, that was repaired through open heart surgery when she was 5 months old and just over 5 pounds. She got through it all and is an amazing 5-year-old, now in kindergarten. She loves going to school. Her favorite things to do are play with her many friends at the park. She also loves to play with her doll house. She has a great imagination and I couldn\'t ask for a better daughter. (credit:tyffanielynne)
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Adailya was 6 and a half weeks early and almost 5 pounds. She just turned 3 (Nov. 5) and is is perfect health and sweet as can be! (credit:Ingrid Dalton)
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Jodha Srawan was born at 27 weeks on Feb 24, 2013. It was discovered at 20 weeks that my placenta was not working well enough. Jodha has IUGR and was growing at a very slow rate. \n\nJodha stayed in the hospital about 106 days and came home at 5 lbs 6 oz. \n\nAt home, he thrived. The only issue we were concerned about reflux and weight gain. We are working on making food and eating fun for him so hopefully the weight gain will be better. \n\nJodha has been meeting all his milestones. He started walking at 10 months adjusted (13 months actual). Right now at 17 months adjusted, he is now learning how to sing and increase his vocabulary.\n\nI may be bias, but Jodha is an incredible child. He is happy and loving. He fills our lives with joy.\n (credit:Ishika Paul)
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This is our beautiful daughter, Manning Grace. She was born at 30 weeks. She weighed 2 pounds 12 ounces and was 15 inches long. At 21 hours old she had surgery to repair her pancreas. She spent six weeks in the NICU. She is now a happy, healthy two year old!\n\n (credit:Meredith and Reed Cole)
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Our daughter Piper was born on 2/17/10 at 27 weeks, weighing only 2lbs. She stayed in the hospital for 100 days before finally coming home! Today she\'s a happy, healthy 4yr old! (credit:Christina Stephens)
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My baby boy Denver was born at 29wks, 2 days gestation while I was out of town visiting family. I developed undetected pre-ecampsia and placental abruption. He was born 12 minutes after arriving at the hospital, by ambulance, via emergency c-section. He weighed 2lbs, 3ozs (was suffering from IUGR). He needed some breathing assistence for a while and spent 7 weeks in the Level 3 NICU. Today he is 2 years old (almost 3!), right on track and he\'s a delightful, spunky, adorable little boy! (credit:Michelle Nolan)
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This is my son Gabriel. I developed severe preeclampsia with a blood pressure of 210/120 and was admitted for observation, 5 days later they took him. He was born at 27 weeks and 3 days weighing 2# 12oz. He was born September 2012 and lived in the ISCU for 4 months. His nurses were angels and are still to this day our best friends, we could not have gone through this without their friendship and sincere love for our son.\n\nGabriel is now 2 years old and full of energy with a passion for all things sports (his father couldn\'t be happier about that.) we look at his first photos and can\'t believe this is how he started out, because he is so healthy now and fully caught up developmentally. My son and I both dodged a bullet, we both survived. He is the love of our life and the reason we breathe every second of every day!\n\n (credit:Katie de la Cruz)
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\nEvie was born on the 2nd December 2012 at 32wks by emergency Caesarian. She was in NCIU for just under 3 weeks before we got to take her home for Christmas! :)\n\nShe is now nearly 2 years old and is perfect in every way , our little miracle. :)\n (credit:Ann Way)
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Sophia and Kinley born at 35 weeks at 4lb 11oz and 4lb 5oz. They suffered from Twin to Twin Transfusion Syndrome in the womb at 18 weeks. Without a laser ablation treatment, done at 19 weeks, one or both of them could have been lost. After 4 months of bedrest, my sweet girls made it to 35 weeks and stayed in the NICU for three weeks. They are now 18 months old. (credit:Mary Browning)
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This is my daughter Payton born at 25 weeks at 15 ounces. She spent 140 days at Children\'s Hospital in Minneapolis. She will be celebrating her second birthday next week (11/14/14). She is a courageous fighter and is such an inspiration to our family! She\'s my little rockstar! Thanks for supporting prematurity by posting the stories of these incredible kiddos!\n (credit:Nicole)
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Our amazing daughter, Ella Dillon, was born on Dec 16, 2011 at almost 28 weeks weighing in at 1 pound 15 ounces. She was in the NICU for 63 days and defied the odds without needing one surgery (she just needed to grow!). Today, she is a walking miracle at almost 3 years old having not one developmental delay. She\'s such a happy little girl who\'s tough as nails, smart and spunky. (credit:Stephanie Dillon)
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I\'m only a recent parent to a preemie, but I\'d love to add my daughter to the ranks of surviving premature babies. I had graduated from college when out of nowhere I went into premature labor. After a emergency c-section I gave birth to my daughter Charlotte at 23 weeks 5 days gestation. She was 1lb 4.5 oz and 11.5\" long. She was born at the hospital featured in the Times article earlier this year and despite this was given a 30% chance of survival at birth. She didn\'t do the typical preemie thing and didn\'t honeymoon as it\'s called. One of her lungs had torn and the other over inflated, and she was on the highest settings on the oscillator. However that was a breeze compared to the IVH or Intraventricular hemorrhages she received from her extreme prematurity. She had the worse bleeds a grade 4 and 3 with the grade 4 throughout the entire right hemisphere to the point that a large cyst formed in her brain and the brain matter dissolved. We were asked twice to continue with palliative care and that she will not have a decent quality of life. Her father and I decided that she would tell us when she had enough and we fought for her. She was extubated after 4 weeks and did well of course with monitoring for her hydrocephalus. After a PDA ligation on her due date she came home after 124 days in the NICU. Despite the huge obstacles she is doing well currently she is 5 months old and has no delays, but she will continue to work with occupational therapists weekly. Thank you again for talking about Prematurity its a issue that is close to me, but I feel that it is sometimes lost among all the other awareness campaigns. (credit:Rachel Beranich)
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My preemie was born at 32 weeks on Dec. 6 2010! We knew from day one of finding out I was pregnant that she would come early. Due to my medical issues. After 8 weeks of bed rest and many steroid shots she made her way into this world. Sydney Nicole was born at 10:00am weighing in at 3lbs 9ozs. She spent only 12 days in the NICU in Topeka Ks. She will turn 4 this December and loves to play, dance and \"be crazy\" with her friends. Every baby is a blessing and I just got to hold mine earlier then most! (credit:Shelbi Huitt-Shipman)
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Hi! My son, Atticus, was born August 7, 2011 at 26 weeks at the University of Kentucky Hospital. He weighed 2 lb 1 oz (940gm) and was 14.25\" long and was classified as a micropreemie . He had a 90 day stay in the NICU at Kentucky Children\'s Hospital, and was discharged home on November 4, 2011. Here are a few photos from when he was born (photo credit Tim Raymer, my husband):\n\nAtticus is now a very happy, healthy, rambunctious 3 year old. He has absolutely no delays, and you would never know he had the rough start that he did. We are incredibly blessed. Here are a few photos of him today at 3 years old (photo credit Hanna Salonen Photography): (credit:Meagan Raymer)
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My triplet daughters were born at 32 weeks, 1 day on August 7, 2010. \n\nBaby A: Evelyn weighed 3 pounds, 5 ounces and was 16 inches long\nBaby B: Emma weighed 3 pounds, 9 ounces and was 17 inches long\nBaby C: Eleanor weighed 1 pound, 15 ounces and was 14 inches long (credit:Jessica Weisenberger/Hezlep Photography)
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My son Jaxon was born at 27 & 6 weighing 1lb 1.7 oz and was 11 inches long. He spent 112 days in the NICU. He had 2 Neuro surgeries and one additional surgery while Genesee hospitalized. He will be 4 in a few months and is doing amazing! The picture of me holding him he was 9 days old and it was the first time I held him. (credit:Tamra Porter)
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My daughter, Katie Marie, who was born 5 weeks early 14 years ago. \n \nI was life flighted to St. Francis Medical Center in Peoria, Illinois as I was suffering from pre-eclampsia and was in serious danger of having a stroke. They needed to take my baby and I was scared to death.\n \nKatie was born on June 17, 2000 weighing in at 4 lbs. She was so incredibly tiny and I was scared to death as she was my first child. She spent 11 days in the hospital.\n \nToday she is a beautiful, intelligent, funny, loving, caring, amazing 14 year old. She is a freshman cheerleader and is loving life! (credit:Ann E. Tucker)
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Vivian Jean Bender. Born Nov 1st, 2012 at 7:26pm. I have congenital heart disease and ended up developing pre eclampsia. Miss Vivian hadn\'t grown in 3 weeks, so they decided it would be safest to get her out. Making her born 17 days shy of her big sisters 1st birthday. She weighed 3lbs 11oz. I breastfed from the very beginning. Luckily for us, god was with us and answered our prayers. The only thing wrong was the fact that she was tiny. As soon as she gained enough to keep her body temperature up herself, we were able to bring her home. She came home on her sister Mabels 1st birthday, weighing 4lbs 1oz!!! She just turned two and is healthy and as smart as ever!!! (credit:Ryan and Doris Bender)
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Audrey was born at just 25 weeks weighing 12 ounces (350 grams) and 10 inches in length due to severe pre-eclampsia and severe IUGR. The doctors gave us very little hope in her survival. But she surpassed all expectations. After 93 days in the NICU, we brought our beautiful, healthy baby girl home. Today she is a healthy, happy 4 year old. (credit:Crystal Diehl)
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We had our fifth baby in March and she was born premature. 5 weeks early. Her name is Alice Cambree. Every month on her month birthday I take a picture of her with a bear she received in the hospital. It was bigger than her then! Now she tosses it around like its tiny! (It is!). She was born at 3 lb 11 oz and is over 15 lbs now. She is our little miracle, having been born with a lot of factors stacked against her, but has thrived and overcome all so far! (credit:Amy Hollingsworth)
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This is my girl, Emery! She was born in February 22, 2011--12 weeks early, due to complications with my body. She spent 62 days in the NICU at Vanderbilt Medical Center in Nashville Tennessee. She is now a thriving 3 year old animal lover! She also loves to \"read\" books, color and play dress up and is so head strong telling me what she wants to wear and how to style her hair daily. While frustrating, it\'s also precious and hilarious! Thank you for bringing so much awareness to National Prematurity Awareness month & for posting so many wonderful things on social media...particularly, the post this am from the RN \"I see you\". My desk about flooded from the tears streaming down my face. Even though it\'s been almost 4 years since our time in the NICU, a mother never forgets the experience. (credit:Lindsay McMillan)
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Layla Rae Douglas \nBorn December 3rd 2009 \n5 weeks early \n4lbs Birth weight \n17inches Long \n14 days in NICU \n\nNow \nShe will be 5 in a couple of weeks \nshe is 48 Inches tall \n52lbs \nGrowing like a weed (credit:Jessica Douglas)
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Here are my twins Casey and Claire Caterino born at 34 weeks and today at 7 months. (credit:Jackie Caterino)
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My son Owen was born at 31 weeks gestation on Christmas morning 2009. We were in the NICU for 35 days. Today, he is a bright, healthy, happy almost 5-year-old. I’m sending pictures to give other parents what we needed most when we were in the NICU -- HOPE that the future can be very bright for these babies despite the early challenges.\n\n (credit:Andria Rosell)


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