Archived postings - past items from the main page


Thursday, May 28 - Adam weighed in tonight at 2350 grams, 3 paper clips short of 5 pounds, 3 ounces. He celebrated the accomplishment with 4 consecutive diaper changes overnight. This definitely puts him in the size range for his car seat, but until he can finish consecutive 8 bottles at 35mL or more, he stays put. Hopefully the constipation he experienced for 36 hours was the main obstacle to eating a full rotation.

Sara was also checked at home by the Methodist Home Health nurse and received a thumbs up. Her weight is not updated due to calibration differences between the pediatrician's scale and the mobile scale. Her next office visit is Tuesday, June 2. Hopefully her brother will be in attendance as well.


Wednesday, May 27, 11:15pm - Adam took 79% of his 8 bottles over a 24 hour period before morning rounds today, prompting the doctor and nurses to skip the rest of the phases and simply give him a bottle at every meal. The bottle will have 45mL of milk and rice cereal but he only needs 35mL to get a 100% (the extra 10mL are extra credit). Upon completion of 8 consecutive meals at 100%, his NG tube will be removed and he will be expected to continue eating from a bottle only and not get any food via tube. With the NG tube out, he will begin car seat testing.

Sara and JoLynn had an appointment with a lactation consultant in the afternoon where Sara's development and abilities were described as exceptional for a preemie only 8 weeks out of the womb and 36 weeks corrected gestation. She also continues to take everything in her bottles so her parents have begun calculating the proper mix of milk and formula to provide a gradual but reasonable increase in meals for her.  Here is their solution:


Tuesday, May 26, 5pm - Adam's swallow test was conducted today and revealed that he has perfectly normal swallowing capabilities. None of the three different thicknesses of fluid caused problems so the feeding therapist and radiologist declared Adam normal. He drank all of his meal at 11:30am and 2:30pm. Mom is going to feed him after his 5:30pm bath and weigh-in. Other than follow-up blood draws, Adam should not need any other tests before going home except for the big one - a car seat test. His size should qualify him for being tested in his own seat, rather than a car bed. Dad dropped the seat off this morning so that he can get tested as soon as he's nippling all 8 bottles.

Sara's second weekly pediatrician appointment revealed a tremendous 12 ounce weight gain from 8 days ago so the doctor suggested allowing her to eat on a more on-demand schedule if she gets hungry before the 3-hour mark rather than increasing her per-meal volume. Her event monitor was downloaded to the OSF Sleep Lab for analysis and results should be reported within a couple of days. Everything else in her visit was normal.


Monday night update - JoLynn arrived at the hospital for the 5:30pm meal and discovered a blood transfusion line in Adam's scalp. Turns out his hematocrit level had dropped since last Wednesday, which would account for his high heart rate and some irritability. Transfusions require feeding by mouth to be stopped, so Adam's 5 bottle streak ended until 5:30am Tuesday. Once the transfusion was complete his heart rate was back down in the mid-100's where it normally was before the caffeine issues.


MONDAY, MAY 25, 2009, 4:30PM - Adam spent the holiday weekend test piloting various nipple and milk/cereal combinations in an effort to find the one that he could successfully use to drink his meals and earn his discharge papers. After feeding therapists, nurses, and parents experimented with single slit, cross cut, standard flow, low flow, firm, soft, blue, green, clear, and yellow nipples, it appears the frustration is over. A surprise opportunity to meet with a second feeding consultant who was checking on Adam's progress on Sunday gave the parents a chance to report on what has and has not worked as well as what Adam can do on his own. The consultant modified a standard flow (blue) nipple with an enlarged single slit and Adam went on to eat 31 of 39ml for Mom Sunday night. He then drank 31 of 39 for the staff at 8:30pm, all 39 at 2:30am, and 35 at 8:30am Monday morning. Dad got him to take another 31 of 39ml at 11:30am. He was then going to get a break at 2:30pm and try another bottle at 5:30pm with Mom.

Nurse Linda indicated that since he was such a big boy and over 35 weeks of age, they were just going to do what is called "queue" nippling - meaning they would queue up a bottle at any meal where he seemed alert enough to go to the trouble to drink it, rather than the structured phases normally followed. This means he could advance quickly from 2 bottles per day to 6 or 8 bottles depending on his stamina and interest level.

Adam has also not had any bradycardias since Wednesday, May 20, at 6:15am, so he seems to have overcome that problem as well. It is estimated that he will also be big enough to go home in his own car seat rather than the car bed little sister uses.

Back at home, Sara has been challenged to use a slow flow nipple rather than the standard flow nipple with which she usually drinks. The feeding consultant suggested that her speedy gulping and apparent insatiable appetite may not be good for her. It enables her to eat too fast, take in more air, and not feel full right away. So her speed eating has been throttled back and she now needs 8 to 10 minutes to finish a bottle, including a burp break, compared to her 5 minute sprints. She has not complained and welcomes the challenge.


FRIDAY, MAY 22, 2009, 8:10PM - Sara got her follow-up eye check with a retina specialist, marking her second road trip in one week since being discharged. The exam was clear and normal and the doctor referred her to a pediatric ophthalmologist for future exams and follow-up since preemies have a higher risk of vision problems. She enjoyed the ride to and from the doctor's office, thinking the frequent bouncing was an amusement park ride when it was really just the spring condition of War Memorial Drive through Peoria.

Adam scored 37 out of 39 milliliters of his 8:30am bottle delivered by the feeding consultant, and 20 out of 39ml at his 5:30pm bottle with Mom, so he just needs one more over 50% tonight or early Saturday morning to get promoted to stage two - 4 bottles per day. The morning feeding provided the consultant with more insight into his eating pattern and revealed that he struggles with reflux while nippling  which can hinder bottle consumption. She recommended adding a small amount of rice cereal to breastmilk to thicken it slightly and make it easier for him to keep down. Nurses are also returning to using an infusion pump to deliver his tube feedings in a more controlled way rather than just hanging the tube and dumping a large volume in his tummy in just a few minutes. Weight gain continues and body temperature is steady in the open crib, so feeding is truly his last major hurdle to going home.

At his current pace, it is likely he will exceed the 5 pound minimum for his car seat and go home in that rather than a car bed like petite sister Sara.  At her current pace, she likely will also grow into her seat within a couple of weeks, but needs to show some better head/neck stability before going vertical. Still no alarms on the monitor except for one brief apnea alert Thursday evening which was either a false alarm or self-correcting.


Thursday, May 21, 2009 - Adam passed more tests Wednesday and Thursday. He passed an EKG, echo cardiogram, blood test, and eye test without even having to study. However, he still is battling the giant of drinking more than 50% of his bottle on his own, but got an assessment by a feeding consultant Thursday afternoon where some diagnostics took place and more suggestions for how to improve his intake process were received. Friday will be the first day of testing the new techniques and possibly a return to Zantac to reduce mild reflux. His weight only went up 20 grams, but was still considered positive since he has been in an open crib and keeping his own body temperature at a very reasonable level the entire time.

Sara meanwhile is keeping her presence at home low key, except for the Prairie Farms dairy tank truck pulling up to the house to supplement the bottles she gets from Mom''s supply. A Methodist Home Health nurse stopped by for a general assessment and weighed her as having gained another 1/4 pound (4 ounces) since her discharge just 7 days ago. Parents indicate she would drink everything they give her if she had her way, but insist on keeping her on a reasonable volume for steady weight gain.


Tuesday, May 19, 4:00pm - Suspecting a disconnect in feeding technique by Dad, Adam was told he would take his 11:30 bottle with nurse Beth to confirm or deny the suspicion. Thumbing his nose at all the adults who thought he had turned a corner with last night's 75% bottle intake with Mom, Adam drank only 38% by nipple and insisted on getting the rest by tube. His attitude seemed to indicate "I'll drink when I want to, dang it!," despite the oral stimulation drills and verbal encouragement being conducted. He may be a twin, but right now about the only thing he has in common with sister Sara is a last name and birthday.

Sara has managed to master a breathing technique whereby she can suck on a pacifier and breath so shallow that it fools her monitor into thinking she is having an apnea event and triggers the alarm. Parents think she's now using this trick to get attention, see how long it takes them to get to her crib, or just tick them off.


Monday, May 18 - Sara got her first road trip after leaving OSF this morning when she visited Dr. Allen Neese at Cardinal Medical Group for her first pediatric appointment. She impressed and amused the doctor so much with her ability to eat that he invited her to Le Peep for an omelette. After the appointment she was taken to Mom's employer, Welch Systems, for an audience with her adoring fans.

Adam actually listened to his mom at the evening feeding and took 29 of 39 mL by bottle. There is now documented proof that he has the capacity to nipple a substantial volume and there's nothing technically wrong with his ingestion system, just motivation and/or enthusiasm. His weight also remained the same from Saturday's weighing. This may be due to the extra calories he's burning in an open crib or because he had 5 stools in one day and "eliminated" some of his weight gain. 


Friday, May 15, 5:00pm - Sara was officially discharged from Children's Hospital of Illinois at OSF Saint Francis Medical Center (aka CHOI at OSF SFMC) after lunch and wasted no time getting home. She knew something was up this morning because she would not go back to sleep after her 8:30am feeding. She indicated she didn't want to miss the shuttle or whatever was coming to pick her up. Parents received their home monitor training and hooked up her leads before the 11:30am feeding and then turned their attention to big brother Adam while waiting for rounds.

Adam got clearance from the doctor to be moved out of his climate-controlled isolette and into an open air crib as a reward for continuing to gain weight and not have many apnea or bradycardia events. He is continuing to practice nippling a bottle a few times per day, but has not crossed the 50% of 2 bottles per day yet. Dr. Clark is confident that he will soon "get it" and start sucking down bottles like they were Michelob Ultra (editor's analogy). She's guessing he will be preparing for discharge in 8 to 10 days, but that is entirely dependent on Adam's ability and willingness to drink bottles.


Thursday, May 14 - After completing infant CPR class Wednesday night, straightening and organizing the nursery further, stocking up on a few extra preemie size diapers and preemie vitamin formula; Shannon and JoLynn finished everything on the "required for discharge" list and got their last night of more than 3 hours uninterrupted sleep. The publishers of this website apologize for the lack of communication, but there just wasn't a lot of time to spend updating the page or uploading pictures.


Tuesday, May 12, 9:45pm - Today's visit was once again filled with surprises and fun. Grandma and Grandpa Mollenhauer came over from Iowa for the day and after stacking many dozens of fresh baked cookies on the kitchen counter, our first discovery of the day was that the kids' nurse for the day shift was Beth Mittelberg, a friend from Northwoods Church. Beth reported Sara was continuing to drink every bottle presented to her, despite the usual 2-day cycle at each level of feeding. She only spent one day at the 4 bottles per day level and skipped 6 per day, going straight to the final level of nippling every meal, 8 times per day in 20 minutes or less.

That kind of eating prowess coupled with having steady weight gain and maintaining her body temperature in an open crib has put her on a fast track to COMING HOME perhaps this weekend. So, with only 3 days left in the week, mom, dad, and child must complete several requirements to qualify for discharge. So much for daily routines!

In addition, Adam has now reached his full volume of 32mL per meal and is working on drinking at least 50% of 2 bottles per day for 2 days to advance to the next level. His lack of experience with nippling will likely be compensated for by his size and strength. He has had noticeably fewer apnea/bradycardia events over the last couple of days and is doing well without airflow or digoxin. A reduction in caffeine is being considered if his awake heart rate stays higher than normal.

Both kids will be on home monitors, one of the items still to be arranged, and training is mandatory for the parents. Infant CPR training is also required before any child is discharged, so mom, dad, and several support people will be attending this week or at their remote locations as needed.

Also, the kids' roommate for a couple of weeks, Madelon Hinkle, was discharged at midday, on her mother Sharon's birthday. Everyone celebrated her triumphant departure complete with a preemie princess wave from her car bed on the way out of the unit.


Monday, May 11, 3:15pm - Doctor's orders didn't change much this morning except for Adam having his pulse oxygen monitor removed (that's the little infrared sensor that glows, usually on the foot), reducing his tube and wire count by one. Discolored aspirates also prompted her to renew his ranitidine (Zantac) for a few more feedings and doses to ease the possible upset stomach he has. Feeding on a bottle has had mixed success because he has had a little spitting up after taking part of a bottle and then getting the remainder via his usual tube. We suspect the problem is Dad not getting him burped enough before the rest of the food runs into his stomach quickly after nippling. Full bottles and normal tube feeding does not have the same problem.

While Sara only has her heart and respiration monitor wire (like Adam) and a feeding tube, her tube has been relocated from mouth to nose which will ease her nippling effort by keeping the tube out of the way of the bottle. She continues to stay bundled up in her open crib as she learns to burn calories to keep her body temperature within normal range. Staying warm on her own is important since it is not good to put very young infants in a crib with a lot of blankets to reduce the risk of SIDS. Feeding is going very well and she is setting record times for finishing a whole bottle in as little 7 minutes for 28mL. She will soon move to 6 bottles per day which means 3 consecutive feedings on bottle and one feeding by tube and then 3 more bottles and 1 tube.


Sunday, May 10, 4:00pm - JoLynn's first Mother's Day included what seemed like an extra long visit after church. Arriving a little early, the morning's routine included Sara getting moved to the OTHER side of Adam's section of the room since that occupant got to go home this morning to her family. Mom gave her a bottle and she went back into a freshly changed bed. She also had a weighing and "bath" earlier in the morning.

Adam tried to drink some of his lunch but is still learning the most effective method for nippling a bottle in less than 20 minutes. We suspect he is not a slow learner, just smart enough to know that nurses and parents will take care of his basic needs so why work at it? Adam still gets to cuddle with Dad while getting the rest of his feeding through the O/G tube and falls asleep moments after giving up on the bottle.


Saturday, May 9 - Later afternoon Children's Hospital of Illinois at OSF called to ask if they could move Adam and Sara back to room 1218. So, by the time of the evening visit they were out of room 4 on the fourth floor, where Sara had just been moved Thursday, and back downstairs. This time, Sara occupied the slot previously held by Adam (bed 5), and Adam was at an adjoining bed. Technically closer, but the floor plan put them on separate coverage groups. The move didn't seem to phase either child, however, since Sara continued eating well from a bottle with Mom, and Adam enjoyed kangaroo time with Dad. The Hittingers also got to participate in the evening care and feeding routine with Dan learning how to change a wiggly preemie's diaper through the hand holes in the side of Adam's isolette and Sherie held Sara after her dinner bottle.


Friday, May 8, 2009, 3:00pm - Surprises were popping up like dandelions this morning as Adam and Sara hit major milestones in their growth and development. JoLynn commented on the way to the NICU that we seem to get surprises on a regular basis - minutes later that was reinforced. Sara was found not in her enclosed isolette bubble but in a shiny open-air crib. Nurse Jessica explained that since she was over 1500 grams and her bed temperature couldn't be turned down any lower she decided to move her to a "big girl" bed. That is a major milestone in the checklist of accomplishments to being discharged.

During morning rounds, Dr. Clark announced that Adam's air flow would be discontinued since it was already as low as possible and the forced air could aggravate his digestive process by putting extra air in his belly. He also got standing orders for "help" if he didn't complete the digestive process on his own every 48 hours. So, right before their eyes, Adam's canula was pulled from his nose and shut off pending complete removal by 2:30 as long as it didn't create any apnea/bradycardia events or desaturated oxygen flow. A status call this afternoon confirmed his progress was good and the airflow gear was hauled away to respiratory therapy storage.

Sara downed most of her bottle for Mom and was also given orders by Dr. Clark to keep her caffeine at the current dosage so that she weans herself off of it by outgrowing its effectiveness for her size.

Adam also was 4 grams short of 4 pounds this morning. Dr. Macwan attributes the rapid weight gain to the fact that IV nutrition is absorbed directly into the system and requires virtually no calories to digest. Sara's weight gains may slow as she gets used to burning more calories keeping her body temperature in normal range but her feedings continue to increase in volume, calories, and bottle count.


Thursday, May 7, 2009 - On the 5th week anniversary of their birth, Sara got moved up to room 4 so the wonders twins could be in the same space. It's not as peaceful and spacious as the stepdown unit in 1218, but at least they are back together. The amazing thing is how quickly the nursing team jumps into action when the green light is given. From the time we said okay, it was probably less than 20 minutes and they had Adam's neighbor moved to the other end of the room, sterilized the space, packed up Sara's belongings (mostly feeding supplies) and brought her upstairs. The nurses in charge of each baby briefed their handoffs with their history and current orders and the kids were in normal care mode right on schedule. The team at CHOI at St. Francis really has their act together. They moved with the precision of a military unit.


Wednesday, May 6, 2009, 5:00pm - Due to 2 bradycardias last night, Sara has lost her chance to kick the caffeine habit just yet. Dr. Clark still wants to take her off at least a week before she comes home, but the discontinue order was canceled before Sara even had a chance to go without. The main advantage to not having the brain-stimulating caffeine is that she and brother Adam are less likely to need a monitor when they come home.

Meantime, Adam's weekly blood test results revealed anemia, so he received a red blood cell transfusion today. Anemia is common for preemies because it is how the body signals bone marrow to start building reticulocytes, the forerunner to red blood cells. The transfusion may cause his reticulocyte production to stall temporarily, but he needs the mature red blood now due to the frequent blood draws and his low starting count.

Adam should begin ramping up his breastmilk feedings tomorrow after receiving 2 days of gut priming doses. Sara was successful in her 2nd day of phase 2 nippling so she will be receiving 3 bottles of her 8 daily meals until she can drink at least half of each for 2 consecutive days. Unfortunately, a miscommunication about available milk supply caused her 11:30am feeding to be delayed almost half an hour at which point she was too tired to drink more than 8mL of her 26mL meal. Oh well, she's new at this. Timing is everything.


Tuesday, May 5, 2009, 3:00pm - Adam got the all clear on his upper GI scan and is set to begin gut priming for 48 hours before getting a full feeding schedule. Dr. Clark wants to keep with breastmilk for now rather than assuming there's an allergy or intolerance and jumping to formula. If he develops a problem again, they may switch to formula, or simply back off the volume.

Meanwhile, Sara is on a drinking binge, finishing her 3rd consecutive bottle in 2 days. If she drinks at least half of another this afternoon or tonight, she moves up to phase 3 of nippling. Additionally, her A's & B's have been infrequent enough to justify discontinuing her caffeine for brain stimulation. It will take a few days for it to leave her system, but if her A's & B's stay low, she may not need a monitor when she goes home.

A request to reunite the wonder twins has been put in to the charge nurse so that when a space opens up back in 1218 Adam can move downstairs. Either that or Sara gets pulled back into the hubub of a busier spot on 4th floor.


Monday, May 4, 2009, 3:00pm - Adam was transferred to room 4 on the fourth floor unit after returning from his radiology appointment for the upper GI testing. Room 4 is like room 3 where the kids first moved once they got out of critical care, but were still on the NICU floor. His scan will require a series of belly x-rays over a range of hours depending on how long it takes for the barium contrast fluid to pass through his system. Once the results are analyzed, he will resume a process of gut priming to prepare his stomach for food again, and then weaning from TPN nutrition via IV to his usual feeding tube and either breastmilk or formula.

Meanwhile, Sara chugged a full 25mL bottle for breakfast in order to raise her weight above Adam's Saturday weight. If she drinks at least half of a second bottle later today and then 2 out of 8 on Tuesday, she'll qualify for phase 3 which would be 4 bottles per day. She had no apnea or bradycardia events over the last 24 hours and the doctor has ordered her meal to be increased to 26mL. 


Saturday, May 2, 2009, 4:00pm - After 3 days with 1 or no A's & B's, Sara proved to the staff that she really didn't need her nasal canula any more so she got it removed Friday morning. She has since had no more A's & B's, suggesting that her elevated heart rate and A's & B's have been resolved by the increased production of reticulocytes (forerunners to red blood cells) which in turn reduced her anemia. Her 2 consecutive days of eating more than half a bottle in less than 20 minutes qualified her to move up to phase 2 feeding of 2 bottles per day (out of 8 total feedings per 24 hours) until she can again consume more than 50% in a 20 minute session two consecutive days.

Adam got his lower GI scan Friday morning and results were normal. The process of clearing the barium contrast out of his system then began in order to prepare him for an upper GI scan on Monday morning. Consultation with an attending physician, Dr. Hocker, the medical director of the NICU, suggests that it is almost certainly a matter of simple premature digestive capabilities or perhaps a slight intolerance of breastmilk. He suggests that after the results of the upper GI test Adam's feeding be replaced with a more elemental formula in place of breastmilk just to rule out that possibility.

In addition, because he has been on IV nutrition for 2 days it is difficult to maintain an injection site for very long, so a new PIC line (the peripherally inserted catheter) has been established to make his feeding and delivery of any other medications more comfortable and less susceptible to infection or collapse. Concerns over the PIC line triggering another SVT in the heart were discussed and the likelihood is extremely low.

The PIC line was inserted at 1pm without any problems so Adam should not need any more digoxin and should be able to keep that single line in place for the remainder of his IV nutrition schedule as he finishes GI tests and returns to a regular feeding schedule. If the Monday test is clear, he should get to restart with the breastmilk substitute that same day using a priming schedule.

HAPPY 4 WEEK BIRTHDAY - now go to your separate room

Thursday, April 30, 2009, 1:30pm - Adam got moved back to Room 2 in the 4th floor NICU overnight due to another distended belly issue. He continues to have stools and there are no other symptoms of digestive problems, so the attending physician has requested a consultation with pediatric surgeons familiar with baby bellies. They agree on performing a lower gastrointestinal (GI) contrast scan to see if there are any obstructions or narrowing of the lower intestinal path. If nothing is found, an upper GI scan will be done to rule out problems on the front end. Preemies sometimes have a malrotation of their intestines where there is a bit of twisting or kinking that causes all kinds of trouble. If nothing is found in that scan, Adam's trouble may simply be attributed to an immature digestive tract and slow motility in his bowels which he will likely outgrow but which may slow his progress toward coming home.

Although he had quite a few
apneas or bradycardias (A's & B's), he resolved most of them on his own and his heart rate has remained normal 2 days after digoxin was discontinued. He also got his airflow turned down to 1 liter from 2.

Sara stayed downstairs in 1218 and had no A's & B's for another day, so hopefully her air flow canula will be removed again. Her nippling efforts are gradual but encouraging as she tries to suck from a bottle once a day.


Tuesday, April 28, 2009, 3:20pm - This morning's visit included regular rounds with Dr. Makwan, the kids' attending physician, and a special visit with cardiologist Ty Hasselman. The rounds resulted in little change to current orders or treatments but in light of continuing apnea and bradycardia events for both Adam and Sara, an increase in caffeine may be ordered soon. Dr. Hasselman explained the SVT (supraventricular tachycardia) Adam experienced when his PIC line was installed a couple of weeks ago and how they will monitor his need for ongoing digoxin. He then looked at his current dosage and decided that rather than have us monitor his heart at home they would order the digoxin stopped now so he could be monitored in the NICU and adjust treatment as needed. As a bonus of that decision, Hasselman and Makwan discussed the orders and decided that perhaps the digoxin was also the reason for his digestive problems since some side effects of digoxin include gastrointestinal issues. Maybe it's not the milk fortifier after all, but at the moment, Adam will stick with the plain milk and no digoxin to see what happens.

Additionally, both kids will stay on their current air flow canulas in order to keep other variables the same. Sara has a little eye discharge that is causing one eye to matter so they will apply some goo to clear that up.

The main effort at this point for both of them is to keep feeding them well so they get to the 1500 gram weight target which is an important milestone where kids often become less dependent on external heat sources and other development can flourish. We will keep testing their nippling ability every day.


Update, 2:30pm - Bottle feed testing for BOTH kids by Mom and Dad. Out of the crib pictures, too! - Check out the link to this week's album for some pics and vids of our first chance to try feeding the kids ourselves. Nurse Kim showed us how it's done and also arranged tubes and wires to take pictures of everyone together for the first time. Kim gets big points with the 'rents.

Monday, 4/27/09, 8:30am - Sunday's visits were all about feeding. Day shift nurse Amanda reported that Sara got to try her first bottle feeding and made it through nearly one third of her meal. Nippling is a strenuous workout for preemies so that was a remarkable start for her. Preemies have a limited amount of energy so they can expend it on eating or maintaining body heat but usually not both at the same time. That's why they're both still in heated beds. Until they get to 1500 grams (3.3 pounds), their energy is better spent on growth, so the bed handles the body temperature side of the equation. If she gets more calories by bottle than she expends by sucking on the bottle, she should have a net gain. Otherwise, it is more efficient to let the food go straight to her stomach via the O/G tube and just practice bottle feeding occasionally.

    As for Adam, who has struggled with intestinal issues for a 10 days, they modified his feeding schedule to ramp up his volume slightly faster than usual so that he could get to a full breastmilk-only intake sooner and not lose calories or weight during the recovery process. Tomorrow he will be at "the line" where they would typically start adding a human milk fortifier for extra calories and vitamins, but this time he will stay on milk only. The purpose is to see if he has a sensitivity to the HMF and keep him from getting all knotted up again. If that works, they'll go a day or two longer before adding a different formula to supplement the 20 calories per ounce nutrition of breastmilk so he can resume growing. He is just a fraction of an ounce short of 3 pounds as of Sunday.

    This week the main points to watch continue to be Sara's production of red blood cells to overcome her anemia without a transfusion, Adam tolerating feeds and continuing to generate reasonable volumes of "output" (mostly when Mom or the nurse are changing him), and for both of them to be less dependent on air flow assistance by not having so many apneas or bradycardias.


UPDATE (7pm) - This morning's visit included some time talking with Dr. Clark who is covering rounds for Dr. Makwan this week, and Dr. Pica, the resident who knows Adam and Sara best. Sara's blood tests indicated she is borderline anemic but also that her bone marrow is gradually kicking into red blood cell production and they would prefer to continue monitoring her heart rate and other symptoms before interrupting her routine with a blood transfusion which would require no food for 12 hours during the treatment.

They also decided that Adam's belly problems might be an intolerance for the Human Milk Fortifier additive in his regular feeding so they are resuming milk feeding right away but will have him up to full 23ml meals on straight breastmilk without any additives before trying a different nutritional formula supplement. If this works, it simply means he didn't like the vitamins and extras in the HMF. The formula additive they will try is the same one they would send the kids home on when they're released, so hopefully he tolerates this and it is his only reason for the gastrointestinal issues. Dad got to change his diaper this morning before the 11:30 meal time and confirmed that his intestines are functioning okay right now.

Saturday, April 25, 2009 - After a few days of good news with their move to the stepdown unit, surpassing their birth weights, Sara going off her "nose hose", and Adam resuming a regular feeding schedule, both kids decided to revert to past bad habits. Sara had a few too many bradycardias and had to go back on a regular flow nasal canula. Adam was constipated while working back up from IV nutrition to milk and was moments from a suppository before "working things out", but still ended up with a distended belly and concerns over his ability to process food correctly.

Sara's problems caused them to do more blood tests to rule out anemia or possible infection and the results indicated she is a little slow in producing her own red blood cells. They are monitoring her progress to determine whether she will need a small transfusion of just red blood cells. The main issue with that process is that she will be off milk for 12 hours during the process and will likely get very aggravated at not getting fed.

Adam's gut is not twisted or "knotted" like it was at the end of last week, but still not right, so they took another x-ray Friday night and blood tests which came back normal. So, diagnosis continues while he gets his system synchronized again. The biggest challenge with both kids' struggles is that any time they need an IV, they get poked again in a different spot and the IV must be moved about every day because their veins can't maintain such a line for long. So they end up with an IV in their scalp, arm, leg, foot - anywhere there's a good vein - until it comes loose or collapses.


The Wonder Twins are 3 weeks old (31 weeks gestation by medical count) today, 4/23/09. Their progress has been surprising at times, so we're quite pleased to celebrate every week.