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.

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.

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.

Re-Ductus

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.