5/19/92 (Day 185) — Preemies at Home, day 52

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.

5/18/92 (Day 184) — Preemies at Home, day 51

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.

5/17/92 (Day 183) — Preemies at Home, day 50

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

5/16/92 (Day 182) — Preemies at Home, day 49

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!

5/15/92 (Day 181) — Preemies at Home, day 48

In putting together this post, I was looking for the medical records for the doctor's appointment mentioned by the nurses in their notes for today. We have literally boxes of records, notes, charts, x-rays, insurance forms and memorabilia from that first year. And bills — lots and lots of medical bills. I finally stumbled across one little clue about this day's appointment — an order change for Molly nitroglycerin treatment from one of her heart surgeons. I realized then that this was her final followup visit with them down at Children's. What remember most about that appointment was being happy that we would never have to see them again. We would follow up a few more times with her pediatric cardiologists, Dr. Cole and his partner, but we were done with the surgeons. I can't say I was sad to see them go. We had never developed the same kind of relationships with the Children's staff that we had with the ISCU staff at Evanston, but maybe that's OK. Maybe that's the way it's supposed to be — get in, fix the problem, get out. I'm still grateful that they did such a good job that we never had to go back. While digging through the boxes, I found this wooden ducky that had been taped to her isolette in the ISCU.

Home nursing notes:

Good night. The twins are so cute. I can’t wait til I visit again.  — Kai

Isaac

Received Isaac from dad, irritable. After changing, Isaac took 17 more ccs of 24 cal formula in addition to the 35 ccs he took for day (total 52 ccs).  Fell asleep in nurse’s arms before being returned to crib. Mild retractions seen when awake along with puffing. Awake and irritable at 1:45 a.m. Eagerly PO’d 20 ccs then burped well, but slowed for the last 10 ccs. Some puffing while eating, but no coughing or gagging. Awake and irritable at 4:20. Hungry again as pacifier wouldn’t do. Took 15 ccs of formula eagerly and burped well, then proceeded to  take an addition 25 ccs more slowly. Fell asleep while being burped. Given Mylicon at 4:30 as Isaac was passing gas as he ate. Awake and fussy at 6:20. Took little eagerly but managed to eat 35 ccs total, puffing a little while eating with nasal flaring. Fussy on and off throughout the day. No bradycardia or apnea. Cardiac/resp. monitor remains on.

Molly

Received asleep. Noted retractions while turning over. Heart rate strong and pulses equal. Fussing and crying at 2:15. Nitro paste applied to L leg. Eagerly took 15 ccs of 24 cal formula with iron. Burped well but fell asleep during last 25 ccs and refused more. Some puffing and snorting during feeding with one coughing episode. Back to bed with pacifier. Awake and eager to eat at 5:30 a.m. Given Mylicon with bottle as Molly was passing flatus. After a stop for a diaper change, took total of 55 ccs. Nitropaste patch changed at this time. No apnea or bradycardia noted. Awake and fussy at 8:30 a.m. Slight nasal congestion. Taken to see physician by both parents in the afternoon. Left with portable O2. Returned from physician’s office at 2:20 p.m.. No changes noted in resp. or cardiac status.

Molly’s Nitro changed to 1 cm q 4° untill 0600 on 5/16. Then the nitro is DC’d. That’s all folks. Have a good shift. — Alisa

5/14/92 (Day 180) — Preemies at Home, day 47

So sleepy. Isaac was having a good night for a change. Ike the Spike — look at all that black hair growing in straight up. Molly, on the other hand, was squirmy. This was a new nurse, who probably didn't know that Molly was born squirmy. Even back in the isolette, she would flip-flip and scoot herself from one side of her little box to the other. To this day, she is a a restless sleeper, all elbows and knees. I pity her life partner.

[ed. note: To our regular readers, thanks for your patience during our unexpected hiatus. Life got a little hectic, picking up the girl from her first year at college (straight As!) and celebrating the youngest brother's bar mitzvah. We'll be catching up as quickly as possible. Thanks for sticking with us. 5/26/11]

Home nursing notes:

Isaac

Ike had a great night. Slept well. A little cranky at 6:00 a.m., then back to sleep. Feedings — 2:30 – 3:00 a.m., 45 ccs, great sucking; 5:15 -5:45 a.m. (with Mylicon), 45 ccs, OK sucking. Very alert when awake. Voided, no stool.

Molly

Molly’s night was not so peaceful. Squirmed around frequently most of the night (every 15-20 minutes). Maybe gas? Mylicon at 4:00 a.m. No. stool. Feedings — 2:00-2:30 a.m., sleepy, coaxing necessary, 50 ccs; 4:45-5:15 a.m., 30 ccs, stopped due to Ike! 5:45-6:00 a.m., 20 ccs, fell asleep. Asleep but still squirming at 7:00 a.m. (but less). Nitro applications back on schedule (see times and limbs). Hope to see you all again! — Mary Jo

5/13/92 (Day 179) — Preemies at Home, day 46

Ike was not a happy camper in this photo. Sometime his tummy still bothered him. Shortly after their release from Evanston ISCU (NICU), we went for our first physical and occupational therapy evaluation. One of the advantages we had of them being born so early was that everyone knew they would need a lot of help and therapy. Here is the first set of exercises we were to perform with them. I love that the orders for the PT and OT actually told us to have fun.

Physical Therapy/Occupational Therapy Activities

Legs — Do while on back:

1. Bend knees up to chest and round back by lifting hips off bed.

2. Straighten legs and lift one up at a time, keep knee straight.

3. While holding on to ankle, bring toes up/stretch out heel cords.

Arms

1. Lift arms up and down and out to side (like angels in the snow).

2. Bend elbows and straighten.

These can be done at bath time and during changing.

Head Control

1) While on stomach, encourage to lift head using rattles and bells.

2) In supported sitting, let [baby] control head mobility; encourage to turn head from right to left using rattles, bells and bright toys.

HAVE FUN!