We read today about baby Melinda Star Guido, another 24-weeker who weighed only 9.5 ounces at birth. Melinda, the third smallest surviving preemie on record, is on her way home and we wish her and her family all the best. I hope her journey is as wonderful and successful as Isaac and Molly’s have been.

Third Smallest Baby: World’s Third Smallest Baby Heads Home from the Hospital – ktla.com.

Molly and Isaac, June 2011

I look at the number and I can’t believe it: 20. Isaac and Molly are 20 years old today. How can that possibly be? How can it be two decades since that day, that day I remember in such stark detail that it has become part of my DNA. I can’t remember most of yesterday, but I do remember almost every minute of November 17, 1991.

I couldn’t possibly have imagined today back then, but the years, the images of my babies tumble in my mind like a time lapse. I can’t isolate one image from another because they scroll past so quickly. I hear snippets of their voices — as babies, toddlers, school aged children and, now, adults. I can’t figure out how they are this close to adulthood when I still feel so far away from it.

In an amazing example of serendipity, November 17 is also World Prematurity Awareness Day, this year being celebrated globally for the first time, as Africa, Europe and Australia join the United States in the observance. For me, every day is Prematurity Awareness Day. Literally not a day goes by without some image, some story, some memory, some lasting or fleeting impact of that day making its way into my consciousness.

Prematurity awareness is a part of who I am. Ironically, it’s really not a part of who Isaac and Molly are anymore. When I tell their tale to someone who has just met them, it’s hard for newbies to grasp. Ike and Molly are just so … normal. The pictures help bring it home, but unless you knew them then, you can’t imagine how far they have come. But even though they have put most of the trauma and drama behind them, little reminders creep up: an achy scar, organizational issues, unexplained illnesses that may (but probably aren’t) related to their early births.

I suppose it isn’t kosher to say that we “celebrate” Prematurity Awareness Day; I think its politically correct to say we “observe” it. Not me. I celebrate it. I celebrate Isaac and Molly’s birthday on this day. I celebrate the doctors and nurses and specialists who helped save them, and those who have cared for them since. I celebrate the work of The March of Dimes and the researchers that came before November 17, 1991, work that gave us the techniques and technology that preserved their lives. I celebrate the friends and family and strangers who hoped and prayed for them.

But mostly, I celebrate Isaac and Molly, not for who they were or how they started, but because of who they are and all they have given me. Twenty years of wonder. Twenty years of joy. Twenty years of being the luckiest mom in the world.

I hope you’ll celebrate with me. Take a minute to learn more about prematurity and the millions of preemies born this year who still have a long way to go. I hope you’ll remember the brief lives of those who did not survive, because their lives should be celebrated, too. I hope you will spread the word on this World Prematurity Day. Or take a look back at where Ike and Molly started by going back to the beginning of this blog, started one year ago today.

Happy birthday, Isaac and Molly. I can’t wait to share the next 20 years with you.

These are the "birth certificate and adoption papers" for a couple of dolls the babies got from my mom, who had been excited to find "preemie" baby dolls. I never quite understood the allure of the Cabbage Patch craze, but I did appreciate these preemie dolls, as we were told that Ike and Molly would probably be significantly smaller than their peers for years to come. The idea of a preemie doll for a preemie child, or for an older child with a preemie sibling was pretty advanced for the day. On the other hand, the idea of a preemie doll in general is a little creepy and exploitative. My kids played with these dolls a little bit (as much as they ever played with any doll or stuffed animal). Molly would boss her baby around, and Ike would rock his singing "Ah, ah, ba-by" and then toss it over his shoulder. I don't think they ever understood that these dolls were supposed to be preemies like them.

Home nursing notes

Isaac

Ike woke crying at 2:00 a.m. After diaper change, bottle offered and he took 15 ccs and fell asleep. Awake and crying at 4:00 a.m. Too 30 ccs formula and fell asleep. Would not take more even with stimulation; he just became fussy.  Woke at 6:30 and to0k 65 ccs formula. Changed at 7:00, but he continued to cry, so offered another bottle and he took 10 additional ccs PO. Awake and alert at 8:00 a.m. Nippled 60 ccs when fed by mom at 10:00. Awake at 11:15, nippled 60 ccs; placed in crib at 11:45. Awake and crying at noon; held and rocked and took additional 25 ccs; continues to be awake and very alert, propped on couch looking at brightly colored toys. Worked on PT/OT exercises; became fussy at 12:40 and nippled 20 ccs. Placed in swing, crying occasionally; asleep at 1:30 in swing, where he slept soundly.

Molly

Awake and fussy at 1:00 a.m. Took 20 ccs formula then fell asleep after diaper change. Awake and crying at 3:00 a.m. Took 30 ccs formula and fell asleep. Awake and crying at 4:30 Took 30 ccs formula PO, passing flatus. Awake and crying at 6:30; offered bottle and Molly took 60 ccs formula and burped well. Continued to be fussy, so gave Mylicon. Awake and alert at 8:00 a.m.. Nippled 60 ccs over 30 minutes. Continued to be awake and fussy. Nippled an additional 60 ccs at 10:00 after diaper change, placed in swing asleep. Awake and crying at noon. Nippled 10 ccs, pushing bottle away. Wrapped in blanket and placed in crib on abdomen, patting back until fell asleep. Awake at 1:15. Has upper airway congestion and occasional coughing, especially during feedings. Nippled 115 ccs (!) over 45 minutes. Placed in crib at 2:30 sleeping, but occasionally waking for very brief periods and fussing.

In digging through my boxes, I ran across this sonogram photo. In the red circle are the two little blobs that would become Isaac and Molly. Ironically, the bigger blob is Ike. Note the date: July 10. They were born November 17 — just four months and one week after this ultrasound. Somehow that seems more remarkable to me than seeing all their preemie pictures. Maybe it's because I've looked at all those photos so often that they're imprinted on my brain and don't register as anything but normal to me. But it's been a long time since I have thought of their birth in these terms. I remember how excited we were to get this photo. Our pregnancy was confirmed, and we thought we were settling in for the long haul. I imagined myself getting huge with those two babies, and went out that day to buy my first and only maternity outfit. I never got to wear it.

Home nursing notes

Isaac

12 midnight took 30 ccs formula PO and retained. Woke crying at 2:00 a.m. Took 40 ccs formula and retained. Fell asleep after diaper change and returned to crib. No apnea or bradycardia. Took 35 ccs at 4:00 a.m. Fussy, but calmed when being held. Took 25 ccs PO at 6:00 a.m.; returned to crib asleep. Monitor on and alarms set. Nasal cannula in place. Mylicon given at 7:00 a.m. for fussiness. Irritable and awake at 8:00 a.m. Awake at 10:00 a.m. No change in resp or cardiac status. Asleep in infant seat at noon. Took 15 ccs at 12:40 p.m. Increasingly irritable; fed rest of bottle at 1:20, which he took eagerly and burped. Quiet and calm when done. Put in crib to sleep at 2:00 as he was drowsy, but he would startle when he heard a noise. Awake and ready to eat at 4:10. Began eating eagerly, but soon slowed. Had two good burps and took all 60 ccs in about 35 minutes without incident. Content with feeding. Put in infant seat at 5:00.

Molly

Asleep in playpen in living room, woke briefly at midnight for diaper change. Attempted PO feeding, but she refused to suck. Took 25 ccs PO at 2:00 a.m.; refused more. Diaper changed and awake for an hour. Took 35 ccs at 4:00 a.m.; refused more. Mylicon given at 6:00 a.m. for restlessness while passing flatus and stool. Took 40 ccs formula and returned to crib on abdomen with monitor on and nasal cannula in place. Quiet and awake at 10:00 a.m.  Fussy at noon, calms when bounced on knee. Put in swing for a few minutes and fell asleep. Awake at 1:30 at sound of doorbell. Fed 50 ccs Similac 24 cal eagerly. Fell asleep in nurse’s arms after feeding and diaper change. Squirming and crying out in sleep at 3:00, comforted when back and bottom patted. Fussy and awake at 4:00. Mom home, so she fed Molly, who took her formula eagerly, all 60 ccs, occasionally coughing and gagging without color change. Fussy still at 5:00; mom warming another bottle.

Getting big! And really good at making funny faces. They still didn't know how to interact with one another, but they did seem to enjoy time together. I think it's so funny that this period of time, when Molly was between 7 and 10 pounds, was the only time in her life that she has looked at all round. At six months old, there were finally the size of average newborns. This was the first of many visits to Evanston Hospital's Development Followup Clinic with the wonderful Nora Manago, Joanne Breagman and Abby Adams. Dr. Adams was the neonatologist who had been on call the night Ike and Molly were born. She also seemed to be on call during every major crisis of their ISCU stay. Dr. Bregman was the director of the followup clinic and Nora Manago was the developmental learning specialist. It was always a joyful visit the developmental clinic. They were among the few people in the world who would look at Isaac and Molly and say: "They're huge!" They were the ones who told me to throw out "What to Expect the First Year." They made me feel like I knew what I was doing as a parent, even though I didn't have a clue. But most importantly, they celebrated each milestone with us because they knew where we started. Over the years, we would visit many doctors and specialists (sadly, such consultations were our major form of socialization and outside entertainment), but none were quite as special as these three women. It was here that we tracked their adjusted age against their chronological age and learned that delayed milestones were to be expected, but skipped milestones would probably mean trouble. The biggest gift they gave me was perspective, and the permission to measure my children against themselves, rather than comparing them to anyone else. It's a gift I wish for all parents and children.

Isaac — 6 pounds, 12 ounces, 19.25″ ↑

Molly — 7 pounds, 4 ounces, 21″ ↑

Home nursing notes

Isaac

Awake and alert at 8:00 a.m. laying in his crib, nippled an additional 35 ccs. Placed in crib sleeping, but occasionally awake and crying. Awake and crying at 9:15 for shampoo and sponge bath. Placed in car seat and then in car for visit to Evanston Hospital for neonatal followup. Returned home at 12 noon awake and crying. Nippled 35 ccs over 40 minutes. Placed in swing. Sleeping but occasionally crying. Removed from swing at 2:1-, nipled 25 ccs over 30 minutes; placed asleep in crib on abdomen.

Molly

Awake and alert at 8:00 a.m. laying in crib. Nippled 60 ccs formula over 30 minutes. Placed in crib while brother ate. Nippled another 25 ccs between 9:00 and 9:15 a.m. Dressed and placed in car seat. To Evanston Hospital at 9:40 for neonatal followup. Returned home at 12 noon. Nippled 60 ccs over 40 minutes, eating well. Placed on abdomen in play pen, fussy periods between periods of sleeping. Awake at 1:30. Awake and crying at 2:00 p.m., nippled 50 ccs, burped well and returned to crib at 3:30 fussy and crying. Continues to be fussy except when being held.

Nothing like a little perspective. This is one of Ike's little socks that my mom and I had bought for him when he was still in the hospital. He was finally big enough to keep them on his feet (loosely — the elastic helped a lot). Alas, he was also skilled enough to work them off his feet. Honestly, I don't know why I bothered to buy either of them socks for the next couple of years, because all they did was take them off as soon as I put them on. But those tiny, blue tinged toes begged me to clothe them, so I tried … often all day long. We also started what was to become a huge collection of "one socks"; you know, the sock you have left over when one of them is eaten by the dryer or sucked into the woodwork. If you think it's easy to lose regular sized socks, imagine how easy it is to misplace one of these little bitties.

[Ed. note — almost up to date. Stayed tuned. I'll try to get caught up over the next few days. Thanks.]

Home nursing notes:

Isaac

Isaac up at 1:30 a.m. for change of diaper and circ care. Fed 35 ccs formula. Up at 5:00, fed 40 ccs; no nasal flaring or retractions. Up at 7:00 a.m. for 20 ccs of formula. Meds given and report given at 8:00 a.m., Isaac awake and quiet. Breath sounds clear in all lobes.

Molly

Up at 1:00 a.m., fed 50 ccs of formula, returned prone to crib. Up at 3:00 a.m., changed diaper with large void. Fed 60 ccs and returned to crib. No retractions or nasal flaring. Fed 45 ccs at 7:00 a.m. Diapered after large void. Meds given at 7:45. No bradycardia, no apnea noted. Slight nasal congestion noted at 3:30 p.m. No nasal flaring, no retractions, no change in cardiac status.

Ike, awake and alert — this was pretty new behavior. Though feeding better, Ike was still taking about 8-10 teaspoons per feeding and having to feed more often than Molly. It was such a blessing to have nurses during the night with two babies who behaved like newborns for many months, needing to be feed often every one or two hours all day and all night long. i was still pumping, but I was not producing enough milk for both of them. Nursing burned too many calories. I tried nursing them at least once a day, but it was mainly for comfort and to see if would stimulate my milk production. Their real nutrition had to come from the preemie bottles, which had soft nipples and large holes, making their feedings as easy as possible. The whole bottle feeing/ breast feeding debate was in full swing back then, but I had to close my ears to much of it, since both sides of the issue found fault in my efforts. All I could do was what was best for my babies in the moment. Pumping for six months was grueling (and I continued to do it for two more months). There was no physical or emotional gratification except the intellectual knowledge that I was trying to provide for them.

Home nursing notes:

Isaac

Awake and fussy at 1:00 a.m., up for feeding, changed and circ care done. Nippled 50 ccs formula, burped well. Fussy at 3:00, diaper changed and circ care done. Up for feeding nippling 30 ccs. Returned to crib after burping. Up and awake for feeding at 6:00 a.m., nippled 75 ccs, burped well. Awake and fussy at 8:00 a.m., up for feeding, change and circ care.

Molly

Up with dad at midnight. Diaper changed and Lasix given. Up for feeding, nippled 30 ccs formula, burped well. Returned to crib prone. Awake and fussy at 3:00 a.m., changed diaper, offered bottle, nippled 40 ccs. Awake and up for feeding at 7:00 a.m. Nippled 60 ccs formula, burped well, returned to crib prone. Awake and quiet at 8:30 a.m. Slight nasal congestion noted, bulb syringed for scant amount of yellow secretions. No nasal flaring, slight subcostal retractions, respiratory rate 62 at this time.

Here are the babes at six months old chronologically, two months old corrected age. For the most part, they were still acting like their corrected age, with frequent feedings and not much ability to self soothe. But their feedings were getting more consistent. They look so awake and alert in this picture, and very much like the infants they were. Traces of preemiehood were beginning to fade, but the retractions noted by the nurses were a lingering sign of their prematurity. Their lung damage made activities like feeding and bathing more difficult than for the average 2-month old. The retractions, which indicated labored breathing, also meant that these activities were burning lots of calories. Getting enough calories into them for them to grow continued to be a real issue. It's hard to grow when you burning off what you eat as you eat it. Molly also had a habit of turning blue (especially her feet and hands) during strenuous activities or temperature changes, both of which were unavoidable during bath time. Her feet still turn a disconcerting blueberry color when she's cold. Just a few months ago, a gym teacher ordered her out of the pool when he saw her color change. Still, look how cute they were getting. Ike's hair was a source of constant amusement. Molly remained close to bald for years.

Home nursing notes:

Isaac

Awake at 1:00 a.m. Circumcision site dressed with gauze and Neosporin ointment. Penis pink. Fer-in-sol given at this time. Awake crying at 2:00 a.m. Took 40 ccs, burped and returned to crib still crying. Tylenol given as ordered, repositioned and rocked awake until 3:00 a.m. Awake and crying at  4:00 a.m., comforted by holding in arms; passing flatus. Took 30 ccs of formula at 4:30. Mylicon given at 5:00 a.m., still awake in crib sucking on pacifier. Took 20 ccs at 7:15 a.m. Awake and fussy at 8:00 .a.m. Took 40 ccs in 15 minutes. Penis pink and slightly swollen; Neosporin and sterile gauze applied. Ike continued to be irritable; gave Tylenol at 8:40. Bundled an placed in crib with pacifier. Awake and crying at 10:30; nippled 40 ccs, burped well. Nippled 20 ccs at 11:00 a.m. then fell asleep, sats 98%. Awake and crying at 1:00 p.m., circumcision care done per instructions. Nippled 40 ccs and fell asleep during feeding. Awake and demanding at 3:00 p.m. Diaper changed and Neosporin applied. Nippled 40 ccs with much encouragement. Continued to be fussy. Tylenol given.

Molly

Asleep but restless at 8:00 a.m. Comforted with pacifier. Awake and fussy at 10:00 a.m. Nippled 80 ccs in 30 minutes. Respiratory effort with moderate subcostal retractions when upset, mild when quiet. Sats 95%. Awake and crying at noon. Bath and shampoo given. Nippled 60ccs well. Back to sleep prone in crib. Awake and crying at 2:00 p.m. Nippled 60 ccs over 30 minutes. Awake and fussy at 3:30; nippled 45 ccs then fell asleep and returned to crib.

I hope you will forgive me, dear readers, for some mistaken dates in this online journal. I'm piecing the preliminary version of this memoir together from so many sources, and it seems I had the date of Isaac's bris (and consequently, the date of Ian's bar mitzvah) all wrong. Ike's bris was this day, May 17, exactly six months after his birth. I discovered this in the nurses notes about today. I don't know how I got the dates so confused. Our photo album was mislabeled. I debated going back and revising earlier posts to reflect the correct dates, but I've decided against it for now, especially since I'm still playing catchup on the blog. This is why we do research before we actually publish our memoirs (I wouldn't want to risk having "Million Little Pieces" scandal). Rest assured that I'll get it all straight. This blog is part of the research and writing process. The words are all true; the pictures are mine; the dates need occasional verification. Thanks for bearing with me.

Home nursing notes:

Isaac

Isaac was circumcised today! He did very well! He only cried for a few minutes and then he was a little angel. At about 1:30 p.m., he began getting fussy. I gave him some Tylenol and he quieted right down. At diaper changes we are putting Neosporin ointment on gauze and applying the gauze over his penis.

Molly

Molly is nasally congested. Her respiratory rates were 60s-70s. Breath sounds clear. Her O2 sats 95-96%. Subcostal retractions. She has been very pink all day. She set off her alarm twice today while stretching (bradycardia). When I checked, her heart rate was in the 140s both times. Just keep a close eye on her! Thanks. — Alisa

Here's the little wooden ornament Isaac had taped to his isolette in the NICU. Back then, there were no personalized items with the names "Molly" and "Isaac" unless you had them customized. They're still rare. We've had to buy some pretty ugly trinkets along the way just because they actually had the right names spelled correctly. We thought we had chosen very traditional names with typical spellings, but over the years we've gotten: Issac (all the time), Isak, Issak, Isik, Issik, Isek, Iyssac (I kid you not) and Molie, Mollie, Moly, Molli and Molley. My mom bought them these wooden toys and personalized them with a Sharpie (trust a teacher to figure it out). She even spelled their names right.

This is the summary report from Molly’s pediatric cardiologists, Dr. Cole and Dr. Weigel.

Dear Dan,

This is a summary letter on the recent hospitalization and operative repair that was performed on your patient, Molly Bearman, at Children’s Memorial Hospital. Molly was admitted on April 13th and underwent closure of her larger secundum atrial septal defect and ligation of her patent ductus arteriosus on April 14th by Dr. M and Dr. B from the Division of Cardiovascular Surgery. Postoperatively, Molly did quite well from a cardiac standpoint. She did have recurrent episodes of atelectasis [partial lung collapse] treated with bronchial drainage and prolonged ventilation. Oxygen saturations ranged in the 88 to 94% range secondary to her severe bronchopulmonary dysplasia. Postoperative echocardiography revealed findings consistent with mild to moderate pulmonary arterial hypertension secondary to severe bronchopulmonary dysplasia. There was no evidence for residual shunting at atrial or ductal levels. Biventricular function was function was normal. Molly was discharged on May 4th on oxygen, 1/4 liter/minute by nasal cannula, and Lasix medication. She is to see the cardiovascular surgeons in one week’s time and will be seeing us in three to four week’s time. A complete operative report [see the 4/15 post for those complete notes] will be sent to you [by the surgeons] once their dictation is complete. If you have any questions or concerns, please do not hesitate to call. Thank you again, Dan, for having referred Molly. Sincerely yours.

Molly

Last Nitropaste patch applied at 6:00 a.m. No more Nitropaste!