Tuesday, July 29, 2008
Monday, July 28, 2008
Sunday, July 27, 2008
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
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
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
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!
Monday, July 21, 2008
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
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
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
Tuesday, July 15, 2008
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
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
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
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.
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.
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
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
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
As you learned from our earlier posts, both
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
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
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
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.