Tuesday, July 29, 2008

All Sorts of Good Stuff

It's been quite a day at the NICU today, with all sorts of amazing little things happening.

Madeline is now doing "sprints" on a nasal cannula once per shift. She did so well on her 30-60 minute sprint regimen, her doctor has now ordered 1-2 hour sprints each shift as tolerated. Maddy's nurses, Annette and Janet, treated Maddy to a day of beauty and got some great pictures of her today while on her cannula (see below). Maddy was awake and alert and was even looking around to see who was talking. She also started looking at her own hands. Not only do the sprints give her a nice break from the CPAP, but we also get to see the little sprout all uncovered!

By the way, Maddy's poor little nostrils are so prominent because of the CPAP mask that she normally has to wear. The CPAP prongs are kept in place by a strap attached to a little hat (see previous pictures) that forces her nose back. Once Maddy is on the cannula permanently, her little schnoz will return to it's normal shape.

Because Madeline is able to use the cannula, we can also do what's known as "recreational breastfeeding" - a strange name for sure. Basically, Maddy gets to give breastfeeding a whirl using whatever instincts she's developed so far, but we don't expect her to get much milk or nutrition out of it. It's basic training for when her muscle tone and breathing-sucking-swallowing reflexes are better coordinated. She did pretty well for her first try and it was really cool for Mom, too. Maddy will probably start doing the real thing in several weeks.

Milo is doing very well after his surgery. He was already awake and semi-alert for a bit today, and has been on standard pain relief. Maddy was in a much tougher spot at this point after her surgery and needed an extra piggy back dose of morphine every 4 hours. Milo is pretty puffy from retaining fluid, but that's a normal after effect of his surgery. There's been a dramatic difference between Milo's and Maddy's experiences with the PDA ligation. Just goes to show the difference a pound of weight and an extra 25 days of maturity makes.

Above: Pudgy little Milo just before his surgery yesterday. The band aide on Milo's right side is holding a chest tube in place.

Monday, July 28, 2008

Milo Makes Good!

Surgery completed about 15 minutes ago and Milo did very well. He's resting comfortably with his PDA securely fastened shut. More to come later. Thanks to all for your good thoughts!

Sunday, July 27, 2008

Trading Spaces

Other than the preparations for Milo's surgery, today was a quiet day at the NICU. Elaine was able to hold both babies for over an hour and both did really well. Madeline had to say good-bye to good o'le room 11. She's now residing in room 8 just across from Milo who will need his own room for tomorrow's surgery.

Maddy's big move. A little traveling music please.

Getting Maddy setup in her new pad. The whole move took about 10 minutes thanks to the experts at Alta. It also helps that Maddy's no longer on half a dozen machines.

Maddy sleeps straight through the excitement. Notice she's still waving her fist in the air. She's a Berkeley baby alright -- just not sure what she's protesting today.

A slimmer and trimmer Elaine hangs out back in Milo's room.

Elaine holds Maddy while nurse Cheryl and friend Anthea look on.

I took this shot today with Milo for some size perspective. By the way, he weighed in at a robust 3 lbs. 5.6 ozs this morning -- a pretty impressive gain, and it's even more impressive since he was weighed on a real scale. Like yesterday, some of this is likely water weight, but still a feat. (Maddy also picked up an ounce and is now solidly over 3 lbs.) By the way, I'm wearing gloves because I've developed an allergic reaction to something -- probably one of the soaps at the hospital. That's also why Elaine has been doing all the holding with the kids lately -- just on the off chance that I've got something contagious.

So Milo's big day is tomorrow afternoon at around 3 pm. Look for a blog post tomorrow evening as soon as the surgery is over.

Saturday, July 26, 2008

Three Pounders

Well, the tight race to 3 pounds went fairly decisively to Milo. According to the official weight meisters (i.e. the twins' nurses), Milo not only hit 3 pounds earlier this week, but also managed to put on another few ounces, too -- he's now up to 3 lbs. 3.5 ozs. As great as all that new weight is, some of it is just fluid from being back on IV feedings in preparation for his surgery on Monday.

Despite his PDA, Milo continues to do well on CPAP. His oxygen needs are still relatively low, around 25-29%. Elaine has been able to hold him for the past couple days outside of the isolette and he's done well with it. His PDA constricts a bit periodically. If it manages to close completely before Monday then the surgery is unnecessary -- but that's a long shot.

Maddy is also showing good improvement. She has also hit the 3 lb. mark and is eating well. She's a little more finicky about being held, but she still enjoys it for short periods. Next week, Maddy will start doing "sprints" using a nasal cannula. Making the move to a cannula will represent one of the next important steps forward for the babies. It's basically a more mild delivery system for extra oxygen. The plan is to let Maddy use the cannula for up to an hour at a time and see if she can maintain her oxygen saturations. The better she does, the sooner she can make the move to a cannula full time. Milo will eventually try sprinting too, but it will follow his recovery from his surgery.

The latest pictures:

Above: Milo catching some sleep with his CPAP mask on.

Above: Mellow Milo.

Above: Elaine holds Madeline.

Above: Madeline raises her fist in defiance. "Babies against nasal prongs!" Fight the power little girl!

Until next time.

Thursday, July 24, 2008

Milo's Murmur

We received word yesterday that although Milo's PDA is large, he is stable enough to wait until Monday for surgery. That's good news because it means that, like Madeline, the procedure will happen at his bedside at Alta Bates. It also means that Dr. Reinhartz (aka Stephen Kissler's brother) will perform the procedure.

In terms of what this will mean in Milo's recovery, in the short term it will be a step back. He'll have to go off feeds for several days, we won't be able to hold him, he'll have to go back on ventilator for a few days at least, and he'll have to have a room to himself. Most of this should resolve quickly though, and without the big heart inefficiency of the PDA, Milo's oxygen needs will decrease and his ability to digest food will improve. Considering how well has done with a PDA, Elaine and I are hopeful that the ligation will mean a big step forward in the long run.

As always, on Monday morning, please send your good vibes to Berkeley.

Tuesday, July 22, 2008

PDA: Take Two

The twins have had several good days now, and - unfortunately - we got some surprising news today. Despite all his good progress, it appears that Milo will need the same surgery that Madeline had back on July 3rd to close his PDA. Yesterday the doctor heard a murmur in Milo's heart and figured it was likely related to another minor condition common to preemies. Then, an ultra sound was performed today, and it was clear that Milo's PDA had reopened and is large enough to demand surgery.

We're hoping to have the operation here at Alta Bates again, but it may be necessary for Milo to make the trip over to Children's Hospital in Oakland, depending how soon Milo's doctor's decide he needs his procedure. (Monday is the soonest he can have the operation here at Alta.)

On the plus side, despite the PDA, Milo has done very well of late and should be a strong patient. The surgery will mean a step back in the short term. He will need to go back to IV feeds immediately -- digesting breast milk creates to great a risk for a PDA baby. Just prior to surgery he will also need to be intubated again. We're all hoping for a quick recovery so he can get back on track, and with the PDA resolved he should see even better progress.

We'll post more info on when and where the surgery will happen when we know -- probably tomorrow.

Keep sending the good vibes!

Preliminary Results!

As of this morning, according to the notoriously fallible isolette scale, Milo has reached the 3 pound mark. Madeline also put on weight and is clocking in at 2 lbs. 14 ozs. But no money should change hands yet! We've received "preliminary" results int he past, and we're proposing that the race to 3 pounds not be called until either baby sustains 3 pounds + for at least two days. Don't count Maddy out yet! She's a pretty voracious little eater, and she poops less than "big" brother.

Monday, July 21, 2008

The Race to 3 Pounds Resumes!

A few days back you'll recall us bragging that Maddy hit the 3 pound mark. Well, it appears that after a judge's inspection, Maddy's 3 lb title must be revoked. More recent and accurate weighing shows that the race is still on. As of this morning, Maddy weighed 2 lbs 13.9 ozs. Milo is brushing up against 3 pounds, but he weighs in at a spry 2 lbs 15.6 ozs. The easy money says Milo takes this one, but, before you place your bets, know that Milo didn't gain any weight between yesterday and today while Maddy put on 29 grams. Also remember that one decent bowel movement could make all the difference. It's still anyone's race.

In other news, M&M are having another good day. Elaine was able to hold Milo for about an hour outside his isolette, and he also had some fun interaction with Dad while he got fed. (Basically, he stared at me the whole time, sucked on his pacifier, and held my hand.) Maddy is also doing nicely. She has come down on her oxygen needs, and were hoping to do a little holding with her tomorrow.

Mom holds Milo.

Milo pulls Daddy's finger (tee-hee).

Madeline catching a little rest.

Sunday, July 20, 2008

Madeline's Video Debut

Maddy and Milo are having a good few days, and we're enjoying the upward ride on the preemie roller coaster. Both babies have had their IV lines removed, so they are no longer getting supplemental dextrose solutions or lipids. Their diet now consists solely of breast milk through their oral feeding tubes (along with some supplemtent). They still get a little caffeine to assist their hearts but now take it orally. The little ones are getting about 25 ml of milk every 3 hours, which is about 6 oz of milk per day. They've been having a little trouble with reflux, which has been making them cranky and desaturate around their feeding times, so they now get their milk over the course of an hour rather than a half hour. (The nurses use a metered machine that pushes the milk into their tubes over a period of time.)

Both babies are also off their skin temperature sensors, which helped ensure that their body temperatures remained constant. That means that M&M are now responsible for regulating their own body temperatures in the constant temperature environment provided by their isolettes. They still have their temperatures taken every few hours to be sure they are warm enough and not getting a fever. They are also wearing their first "clothes" now that they are responsible for keeping warm - t-shirts with the sleeves rolled up so much they look like enormous 19th century coat cuffs (or 1950s greasers with a pack of smoke rolled in theur sleeves). Both of them are also swaddled with blankets.

Okay, now for the special treat. Madeline was really awake and alert yesterday for fairly long periods of time, so we got some video of her peeking at us with her binky (her new best friend!) firmly lodged in her mouth. This is the first time we've tried posting video on the blog, so if it doesn't work, let us know and we'll put it on YouTube.

I also got to do some kangaroo holding with Madeline for the first time in weeks since she was off her vent and having a pretty stable day. She only lasted a half hour or so before starting to fuss. Both babies can vocalize now that they are off vents, and give little cries when they're upset. They're a bit hoarse because the vent irritated their vocal cords, but this clears up over a few weeks. We're looking forward to the time when they can really blast us!

Be patient with the download time. :)

Friday, July 18, 2008

Surprise, Surprise

After hearing the good news yesterday afternoon that Maddy was hovering at 3 pounds, we arrived at the hospital yesterday evening to find her on CPAP! And doing pretty good on CPAP at that! Turns out the little bugger extubated herself again around 2pm, so they decided to try her on the breathing mask to see how she did. So far, she has been doing pretty well, though she is a bit agitated with the new apparatus on her face, which is pretty common. (When we called for our late evening update before bed yesterday, her nurse commented on her fiery temper. Hee, hee!) This morning when Rob called to check in on the babies, Maddy was on lower oxygen levels than Milo, who is also on CPAP. This great leap forward may not last, but we're grateful that she gets a break from the ventilator and are really proud of her for doing so well. (You'll recall the last time they tried her on CPAP this week, she only lasted a few hours.) Unfortunately Maddy's lungs aren't perfect. They are showing some scar tissue development and varying fluid levels, so BPD is still a phantom in the distance. Her x-ray yesterday looked much improved, though, so we're hopeful.

We were also pleased to find that Milo has been moved back in with his sister, so the Stiles Twins are back together again in the same room. This makes visiting a lot more private and also helps cut down on some of the noise and activity Milo had to deal with when he shared his room with bigger babies. Milo is still doing pretty well on his CPAP, though his oxygen levels have crept up in the last day or so. Our little mister is also at the 3 lb mark, more or less, though the isolette scales are notoriously variable. (Maddy weighed in at 2 lbs 14 oz again today, but they're both still within spitting distance of 3lbs, so we're happy.) Milo is also still enjoying being difficult for his nurses, but a regimen of swaddling and pacifier use seem to keep him in good oxygen saturations. That boy likes his creature comforts!

Thursday, July 17, 2008

Our Little Fatty Maddy!

I just checked in with Madeline's nurse and it looks like she weighed in at 3 lbs this morning. Maddy has now passed up Milo, who weiged in at 2 lbs 14 ozs today. Bear in mind that the isolette scales are not always extremely accurate, but they do offer a good ballpark. Milo is now eating enough to begin his Prolacta supplement today. (Prolacta is a new humand based milk supplement that is designed to help preemies with their special nutritional needs.) That should help fatten him up a bit.

Tuesday, July 15, 2008

You Can't Always Get What You Want

Parents of NICU babies generally don't like to see bright lights and lots of people in their baby's room. Excitement is generally bad. What you want most is darkness and the boredom of slow, steady progress.

Above: Activity and lights as the respiratory therapists and Madeline's nurse prepare to intubate her.

After a pretty good day yesterday, Madeline's vent tube needed to be removed today, and, rather than intubating her again, the doctor gave her another try on SiPAP. She lasted for over an hour, but her oxygen needs went up too high and she needed to go back on a vent. Maddy is getting stronger, and her vent settings are relatively low. With continued progress and a few good breaks, hopefully she'll get there soon, but it may be a while. We've learned to keep in mind that activity in the kids' room is not always a terrible thing, and positive steps forward often require trying out new care strategies. Some pan out, some don't and that's all part of the journey to September.

Take 2 on kangaroo care: It's been a while, but we were able to start holding Milo again yesterday. I got my shot today and Elaine is pictured below holding Milo yesterday.

Another shot of me with Milo. If you look closely, you can see Milo yanking out my chest hair. (Look at the lower left hand side of the picture.)

Elaine doing containment holding with Milo.

Elaine hanging out with Milo.

There's just no way to make medical devices look pleasant, so try and ignore the tubes. The important part is that Maddy is comfortable here and alert and getting a little chubbier.

The weird looking headgear thing on Maddy's mouth is called a Loagan's Bar (sp?), and I think we can agree that it looks pretty terrible on her. Nevertheless, it helps to keep her vent tube stable, and she can make anything look good (can't she?). The other less obtrusive stabilizer started to irritate her skin and it wasn't keeping the tube in very well.

Also notice that Maddy is sporting her new, bigger diapers in this picture. Although she had to miss a couple today due to the excitement, she's up to 11 ml. on her feedings. You can also see that the scar from her PDA surgery is healing well.

Elaine with Milo yesterday. He seems to do a little better with her than dad. I don't think he likes chest hair.

Monday, July 14, 2008

What a Difference a Day Makes!

Yesterday M&M hit the one month mark! For the glass-is-half-full types, that's four weeks down. If your glass is half empty, 11 weeks to go (roughly) before the duo comes home.

Milo has done well since Saturday. In the days just after he went on CPAP the doctors thought he may need to go back on a vent, but his oxygen needs have decreased and it looks like he's going to make a go of it. His feedings have also increased, and he's now sucking down about 10 ml. every three hours of breast milk. He's seen some modest weight gain in the past several days and is looking more like a baby and less like a little old man.

Madeline. Unfortunately, Maddy hit some rough patches over the weeked. Particulary during the day time when she experienced several desaturations (drop in the amount of oxygen in the blood), and her supplemental oxygen needs went way up. It was one of the tougher stretches we've faced in the last couple weeks. On the plus side, she is doing much better today. Her oxygen needs have come way down, and she looks much more comfortable.

One other interesting development - M&M are now sporting larger diapers. So it's official -- they are growing. Hope to have some pictures posted later today.

Saturday, July 12, 2008

Madeline Has Enough

Taking a cue from Milo, Madeline decided to have a go at extubating herself last night. The doctor was thinking of trying her out on CPAP, so they used the opportunity to see how she would do with just a mask. Unfortunately, Maddy wasn't quite ready to step off of ventilation just yet, and so she's currently back on her oscillating vent. Hopefully she'll be able to make the switch sometime soon.

Today hasn't seen a lot of progress. After all the great steps forward in the last week, Elaine and I have come to sort of expect that there'll be some new breakthrough each day. Today the kids appear to be marking time a bit, but that's always better than steps back. Milo is pretty consistent with yesterday, while Madeline is more finicky than usual and is having trouble settling down.

On the plus side, Maddy and Milo are both eating well. Madeline is up to 9 ml. of breast milk at each feeding and Milo is at 7ml. Both babies are currently involved in a study of a human based feeding supplememt called Prolacta. Preemies typically receive a cow based feeding supplement around the time that their feeds reach 100 ml. a day. Because the cow based supplement is difficult to digest, the thought is that a human based supplement such as Prolacta can be introduced once preemies reach 40 ml. a day. Anyway, there is a study underway to determine the benefits of the human based supplement over the cow based supplement, and we're pretty excited that the kids will both get the benefit of the additional nutrition from a human based source. The supplement is in addition to their regular breast milk feedings.

Thursday, July 10, 2008

Getting Better All the Time

The last couple days have brought some positive and unexpected improvements for the twins. First, late in the day yesterday, Milo was extubated and moved to a CPAP machine. We thought this might happen eventually, especially since the little guy was doing so well on the ventilator. We just didn't expect to see it so soon. He's doing well so far, though, and hopefully he'll be able to stay off the ventilator for good.

Although CPAP is a big step forward in his treatment, it looks much worse than a standard ventilator -- instead of just having the tube in his mouth, Milo has to wear the mask over his nose and the little hat to keep it in place. He's not a big fan of the apparatus, and he basically does what he can to try and squirm out of it. Milo also very active and tends to move around a lot in his isolette. Donna, one of Milo's nurses, swaddled him today and he likes it very much! The only down side is that it's tough to see much of him under all the gear. Hopefully in the coming days we can begin the kangaroo holding with him again.

Milo all swaddled up and sporting a CPAP mask.

Madeline is also doing well. She is recovering nicely from her surgery and was finally put back in an isolette today. You may have noticed that she was on a warming table in the last few pictures; they had to keep her there for several days following her surgery. I hated the thing -- it looked far too much like one of those roast beef carving tables you see at the end of a buffet line. I just kept imagining that someone was going to walk up and ask for an end cut and some horseradish sauce. (Too far?)

Madeline is still on an oscillating ventilator, but she is able to tolerate her breast milk feedings well so far. As she continues to get bigger and gain strength, she'll likely be able to move to CPAP or SiPAP like her (slightly) bigger brother.

Madeline holding hands with Dad inside her fresh new isolette.

BTW: just in case you were planning to visit, but are concerned that you don't happen to know the lyrics to "I Can't Smile Without You" or "On Top of Spaghetti," Janet, one of Madeline's great nurses, has kindly printed out the words and posted them at their bedsides. No excuses now!

Wednesday, July 9, 2008

Several Good Days

After all the ups and downs of the past week, Milo and Madeline are enjoying a couple of relatively stable days. Madeline's lungs are now uniformly processing oxygen, which means her vent and the repositioning regimen worked well. Her oxygen levels have been pretty moderate (high 30s to mid 40s). She is also recovering well from her surgery. She is off the dopamine and they are slowly weaning her off her morphine. She started getting breast milk again yesterday - 3 ml every 3 hours - and so far has been tolerating that well. They removed the dressing from her incision and it is healing nicely. She has three little stitches, but the scar is barely visible. I was able to talk and sing to her for about 15-20 minutes yesterday without any desaturations, and Rob did some successful containment holding and talking with her in the evening. This is a nice change, since for the past several days if you even looked at her sideways she'd go nuts. They literally had stop signs on her room door so that unnecessary people weren't walking in and talking or moving around in there. So, she's doing much better.

Milo is also doing well and has been down in the 20s on his oxygen levels, which is great. He is adjusting to the oscillating vent and has been having fewer temper tantrums. (Even though he can't make noise because he's intubated, he will cry up a storm when he's mad, flailing his arms, grimacing and making his heart rate rise. We calm him with music and containment holding. Her really likes Baby Einstein Mozart, which his nurse Sandra plays for him on her Iphone.) Temper tantrums are a good sign, though, as it means he still has a lot of vim and vigor. :) Milo is getting 2 ml of breast milk every 3-4 hours and is responding pretty well to that level of feeding. He is also able to tolerate talking, singing, and some containment holding now, which he wasn't as able to deal with for the past few days.

We're thrilled both babies are getting breast milk now so they can grow, grow, grow!

No word on next steps with the ventilators yet. The next step down would be to put them on conventional vents rather than the oscillating/jet vents, but we were told by the babies' doctor that they will be on the vents of one kind or another for several weeks.

Sunday, July 6, 2008

M&M -- The Three Week Mark

A good day for Milo today. Here he's all all curled up and very relaxed. Dad did about 30 minutes of containment holding with him today and Milo responded very well. He seems to be growing too. His latest weight is from 3 July and he was 972 grams. I'd guess that he's probably pushing 1000 now. (454 grams to a pound -- Milo was 907 grams at birth.) BTW: you can click the images to enlarge.

Milo's nurse Belinda and the respiratory technician prepare to flip the little guy onto his belly. They shift his positions around regularly to keep him comfortable. Milo and Madeline both like being on their bellies best lately. This makes them feel more contained because they feel boundaries with their arms and legs, versus being on their backs and flailing their limbs into space.

You guessed it, Milo on his belly. Looks like the lad is developing a bit of a gut. We couldn't be more thrilled.

Madeline resting nicely and recovering well from her surgery. Annette and Cheryl, two of her primary nurses, have been keeping a close watch over Maddy for the past couple days. She's doing very well thanks largely to their care and she's avoiding many of the usual complications that come along with PDA ligation. The bandage you see is where her incision was made.

It's hard to believe, but Maddy has done some growing too. She weighed about 850 grams at birth and is now around 950 grams. With the surgery behind her, she can focus on growing full-time. One day soon, she'll be bigger than Elvis -- but not fat Elvis.

Saturday, July 5, 2008

Lungs, Lungs, Lungs

As you learned from our earlier posts, both Milo and Madeline are back on ventilators to help them breathe. They were initially weaned off the ventilators in their first week or two of life to see if they could support themselves breathing with a little assistance from a CPAP. Unfortunately, both their lungs were too immature to last long on the CPAP, and, to avoid completely exhausting both of them, they went back on vents. It was pretty apparent by the time the doctors shifted them back to a ventilator that they were ready. They had lots of desaturations (when levels of oxygen in their blood stream are too low), combined with large drops in their heart rates.

Milo's lungs are looking pretty good for a baby his age, and he is responding well medically to his oscillating ventilator (an oscillating ventilator keeps a baby's lungs continuously inflated by providing tiny quantities of air at extremely rapid rates), but doesn't like it much and flails around a lot when he's awake. On the plus side, the doctors are able to keep his oxygen levels are pretty low, generally between 26 and 34%. (Room air is 21%.)

Madeline is also on a high frequency ventilator. She is still recovering from her surgery and is plugging along. On her third day after surgery, she is much more hearty and her blood pressure and heart rate are doing much better. Unfortunately, she has some lung complications unrelated to her surgery that the doctors are trying to correct. Her left lung is distended, meaning that air is entering the lung and not going anywhere. Her lung tissue is too thick to absorb the air due to immaturity, and the lung is expanded and pushing down on her diaphragm. In order to collapse the lung (meaning to get the trapped air out, not total collapse), the doctors are changing her position to lay her on her left side to allow gravity to help close her lung. Complicating matters is that her incision from her PDA surgery is on her left side, so they are carefully monitoring and managing her pain levels. Basically, the ultimate cure for the condition is for her to grow and for her lungs to mature more, so this situation will be with us for several weeks.

Long term, because both babies were not able to breathe well off ventilators within their first week or two of life, they are at higher risk for what the doctors call bronchopulmonary dysplasia (BPD), or chronic lung disease. When babies are still on ventilators several weeks after their birth, the supplemental oxygen and mechanical ventilation can damage lung tissue and impair their ability to heal. Typically BPD is diagnosed for babies Milo and Madeline's age when they are still on oxygen 36 weeks after conception. The condition is treated by slowly weaning them off their vents and off oxygen, combined with good nutrition, medications, and attention to getting their lungs to grow and heal. Most babies with BPD get well quickly enough to go home by their due date, breathing on their own. Babies with more severe BPD are more vulnerable to respiratory infections in their first year of life, as well as asthma, and occasionally smaller than average lung capacity. However, in all but the most extreme cases, the difference is not enough to inhibit their normal activities or play. The babies' current doctor, David Durand, is a respiratory specialist, and believes that Milo & Madeline have a good shot to be in the moderate category, and will eventually recover from this condition as they grow. What it ultimately boils down to long-term for them if all goes as expected is that they should never smoke, and careers in firefighting, mining, and asbestos manufacturing are right out.

I haven't linked many internet articles or information on BPD to this post because much of the information available is worst case scenario and pretty scary sounding. Certainly read it if you like, but keep in mind many children go on to live normal healthy lives after having this condition, and Milo and Madeline have not been diagnosed with this condition yet. The information on BPD above was taken from the Preemies book we mentioned previously.

Friday, July 4, 2008

A Little More About Yesterday

Maddy is recovering from her surgery this morning. The doctors are running the normal gamut of tests to ensure that there's no sign of infection. Her stats are generally good and she's getting along on relatively little supplemental oxygen. The only trouble spot is her heart rate, which is on the high side. That may indicate that she is feeling some pain, but she's had a high heart rate all along. Just in case, the doctors have given her some extra pain medication.

Meanwhile, in the room next door, Milo was switched to a different type of ventilator to help him expel carbon dioxide. Shortly after Maddy's surgery yesterday, Milo managed to dislodge his breathing tube. His nurses sprang into action and got him back on track very quickly. I guess Milo wanted to be sure that people were paying attention to him too.

Some extra information, pictures, and thoughts on all of this:

Above: Elaine and I with Maddy before her surgery. She is outside her isolette on a warming bed in preparation for her operation. The doctors performed the surgery right here (minus the nice quilt). The nurses frequently shift the babies positions to keep them comfortable and to prevent problems with muscular development. Here, Maddy's on her belly. They also keep her eyes covered because they are so sensitive to light.

Mom spends time with Maddy.

Maddy's NICU room became an operating room and the place was a buzz. Although everyone involved had extensive experience with this procedure, Madeline was the first baby at Alta Bates to receive a PDA ligation at the facility. Normally, the babies go to nearby Children's Hospital for the procedure. Cheryl, the women in the center of the picture at the bedside, is one of Maddy's primary nurses.

Maddy's surgeon, Dr. Olaf Reinhartz prepares Maddy for her operation. (For those of you who know our friend Stephan, check out Dr. Reinhartz's profile. You'll be amazed to learn that Stephan has a long lost brother who's a cardiac surgeon!)

Above: Milo rests comfortably in the room next door. Notice his little hand right next to his mouth? The little guy likes to grab things...

Sandra and Terry, two of Milo's primary nurses, swinging into action after Milo dislodged his breathing tube. At this point he was stable.

So why was I taking pictures of all this? A week or so ago, I would have been a mess, and, don't get me wrong, none of this is easy to watch. But, it's all part of the journey now and this was not the first time Elaine and I have had to see such things. We have a lot of reasons to hope (and maybe even expect) that this is all going to work out OK. Ever since their birth, Elaine and I have pored over the research and talked to doctors about the expected outcomes for 25 weekers. Most of what we've read gives us guarded optimism -- but we're always trying to assess how Milo and Madeline compare to the other 25 weekers who have made it though the first several months and gone on to live healthy lives. Come to find out, Milo and Madeline are progressing pretty much just as expected at this point for babies born at their gestational age. Barring an infection or some other serious unexpected set back, they should do alright. So, if you're a new parent of a NICU baby who has found this blog, take a look at the pictures and know that this is all "normal."

By the way, for those of you who have also been looking at the research online or elsewhere, avoid looking at studies more than 10 years old. Keep in mind also that when you control for factors such as the parents' background, nutrition, education, and the level of support and intervention the child receives, the long term outcomes start to look much better. For those interested, Elaine and I recommend the book Preemies: The Essential Guide for Parents of Premature Babies for the best information. It was written in 2000, but it's still one of the best books out on early babies.

Thursday, July 3, 2008

Successful Surgery!

Maddy's surgery completed about 45 minutes ago and she is doing well. There was an immediate improvement in her blood pressure, and she tolerated the surgery well. Elaine and I were oddly comforted by the fact that the surgeon was a bald German man who looked and sounded remarkably like our good friend Stephan Kissler. (We hear that Stephan can reduce dislocations, maybe he can also perform heart surgery?)

Milo also saw very good improvements today. After a terrible day yesterday, he is back on a ventilator and doing very well on relatively low levels of oxygen. He is also enjoying a little peace and quiet in a separate room from Maddy for now, but the twins will probably be reunited in the next few days.

Stay tuned for more information and pictures.

Wednesday, July 2, 2008


After reviewing a final set of results from her chest ultra-sound today, the doctors have scheduled Madeline for surgery to close her PDA tomorrow afternoon sometime between 3:00 and 4:00 pm. The procedure itself normally takes about an hour, and the plan is to perform it in Maddy's NICU room at Alta Bates. Up until now, that has not been possible at Alta. Even though Alta and Children's Hospital in Oakland share the same NICU doctors, the patients at Alta were normally transported to Children's for surgical procedures. Alta recently changed this practice and Madeline will be the first baby to receive her surgery on-site. We're happy about this because it eliminates the risks associated with transfer, and it also eliminates the possibility that she will be permanently transferred to a different hospital than Milo. (Imagine having to split our time between two hospitals!) The doctors explained that Maddy will initially need additional support (more oxygen, rest, etc.), but she should rebound after a day to several days and start making good progress thereafter. So, tomorrow afternoon please send Madeline your good vibes.

Yesterday Elaine was able to hold Madeline for the first time. Maddy rested comfortably with Mom for over an hour. Sorry for the darkness of the pictures, but Maddy's eyes are very sensitive to light.

If you look close you can see Madeline's blonde hair coming in. Too early to figure out eye color.

Milo has been making steady progress for the last couple days. Most of his problems are more related to the poor fit of his SiPAP mask -- it's persistent issue for pretty much all small preemies. Still, it beats getting intubated again if he can avoid it.

Dad got his first chance to hold Milo today, but the pictures came out pretty terrible and Milo didn't do so well. I got to hold him for few minutes before he had a brady and needed to go back in the isolette. We hope to get some better shots of the poor little guy tomorrow.

By the way, both babies love to be sung to. Madeline's favorite song is the Manilow classic "I Can't Smile Without You," and she also likes the theme song to Giligan's Island. Milo likes the children's favorite "On Top of Spaghetti." He also enjoys his pacifier and being difficult for his nurses.