General Update
Today was pretty similar to yesterday in regard to the boys' behavior. William is now a superstar and breathing and eating like a champ. He maintained his sats throughout the day. Aaron's sats are still very affected by the reflux, and his breathing was up and down all day. This is common with preemies, as with full term babies. While he may not outgrow the reflux any time soon, as he grows his body will be able to deal with it better so that he doesn't stop breathing. Along with the reflux comes spit up, which is now covering my shirt :) But it does make him feel better. What was the saying in college (and I can honestly say that I don't know this first hand)? Puke and rally? He's got that down.
Feeds went up again, and the PICC lines came out for both boys - excellent steps forward. They will be getting all of their feeds through their tubes, and the caffeine (to help them remember to breathe) will be mixed with the breast milk. The feeding tubes are just tiny tubes running through their noses into their bellies. They were originally in their mouths, which is more irritating. They would get just an IV if they need antibiotics in the future.
Both boys received some time with the occupational therapist today. She went over a few positioning tips to help correct postures that have been created in the NICU. When the babies are in the womb, they are basically curled into a little ball. Their shoulders round in, their heads are in line with their spine, and their hands generally stay at their midline (middle of their body and close to the face). In the isolette, their shoulders start to lose the roundness and rise up, their heads can get pushed back from the CPAP, and their hands stray from the midline. We'll learn how to keep them positioned properly, and will eventually learn infant massage and stretches. She checked out the tone and reflexes for both boys, and both are appropriate for their age.
Change of Heart
The big news for the day came this morning...our primary nurse asked if we had toured MRMC's NICU yet, which we have not. We were there very briefly when the boys were born, prior to their transfer. All that I remember about it is that it's very small compared to St. Mary's, and very dark. She suggested that we tour it in the next day or two, which immediately made me ask why - I thought we couldn't move them for a few weeks? Apparently the doctor of the week feels otherwise, and we could move them as early as the end of this week!
Hold the applause.
As much as I wanted to move them back to Mechanicsville, to be 20 minutes closer to home and just 5 minutes from work, I don't think they're ready. The doctors are the same, but the nurses are different, and the level of care can't compare to St. Mary's. MRMC sent the boys away for a reason. They don't take singletons under 28 weeks, or multiples under 30 weeks. William and Aaron will be 31 weeks tomorrow.
My understanding from talking to several nurses, including one who used to work there, is that they're used to dealing with babies who are mostly stable. They are trained by the St. Mary's staff, and St. Mary's is the leader with more progressive care. They only have 2 or 3 nurses per shift, and no secretarial staff, so they are also answering phone calls. When one nurse goes to lunch, there could only be one nurse available. What would happen if both boys are having an apnea/brady spell? As one nurse told me, and not in the most positive tone, "they could handle it," but is just "handling" it enough? Other negatives to moving now - the therapists are not there every day, the surgeons are not there, and if anything serious did happen they would be moved back to St. Mary's anyway.
Also, we now have a relationship built with St. Mary's. We know the nurses; the nurses know us and, more importantly, the boys. We'd have to learn a whole new set of personalities, and it could take a little while for the comfort level to build back up.
The two benefits that I see are: 1) It is dark and quiet, so they would have less stimulation, which would be awesome for them. St. Mary's is busy. and 2) It's closer to home.
Our primary nurse and other individuals have been pushing for the move for us, since I've been adamant about it since day 1. We will go ahead and tour the MRMC NICU this week. At the end of the day, though, we've decided that our convenience is not worth the potential downgrade in their quality of care. (Obvious statement, I know). We will re-evaluate in a few weeks and see if we want to move them then. I am appreciative of that flexibility. That said, if we get a few weeks down the road and they say the boys can come home in another week or two, we'd probably just stick it out at St. Mary's.
As mentioned above, the boys will be 31 weeks tomorrow! The time is flying. Not to start predicting when they will be coming home, but for the sake of conversation let's say that maybe perhaps they could come home around 36 weeks...that's only another 5 weeks ahead of us. It's funny to think "only" in regard to 5 weeks, but having been through that time already it doesn't feel long at all.
An extra prayer request for today: Our NICU friends should be bringing their 24 weeker (now about 38 weeks) home on Sunday - please pray that she has an excellent week and can begin her new life home with mommy and daddy as expected!
Tuesday, August 2, 2011
Monday, August 1, 2011
5 Weeks Old!
This week has started out as well as last week, with cozy cuddle time and general good behavior from the boys. Both have gone up on their feeds again to 18cc (just over 1/2 an ounce) every 3 hours, and may have their PICC lines removed tomorrow. I'm looking forward to the removal, as it's one less potential infection site.
We can start putting the boys in clothes when they reach 1500 grams...or about 3lb 5oz. I need a refresher on the metric system :) I can't imagine the itty bitty boys fitting into even the littlest outfits, but it will be so much fun to dress them!
William had a great day and was fairly stable. He had been a day or so behind Aaron in the respiratory arena, but held his own today. And...we had practice nursing time! When his tube feed was over, he unlatched and just snuggled...so cute. My kangaroo holds with both boys going forward will be at breast instead of just skin to skin contact.
Aaron had a good day as well, but was up and down with his sats most of the afternoon. While he is digesting his food well now, he is having some reflux and spitting up, which would attribute to the desats. Occupational Therapy was ordered for Aaron today, but it wasn't the best day for it to start as he needs to be a little more calm to handle more touching. It was ironic that it was only ordered for Aaron when I believe William would have done great with it today. Per the therapist, the sessions will be daily and probably only last about 5 minutes each day. I'm still not exactly sure what the 5 minutes will involve, but hopefully we'll find out tomorrow for both of the boys.
Here's a bit more about occupational therapy for preemies, from http://preemies.about.com/od/glossary/g/occupationaltherapy.htm:
Here's a funny picture of William from yesterday...look at that face!
Aaron all snuggled in his bed:
We can start putting the boys in clothes when they reach 1500 grams...or about 3lb 5oz. I need a refresher on the metric system :) I can't imagine the itty bitty boys fitting into even the littlest outfits, but it will be so much fun to dress them!
William had a great day and was fairly stable. He had been a day or so behind Aaron in the respiratory arena, but held his own today. And...we had practice nursing time! When his tube feed was over, he unlatched and just snuggled...so cute. My kangaroo holds with both boys going forward will be at breast instead of just skin to skin contact.
Aaron had a good day as well, but was up and down with his sats most of the afternoon. While he is digesting his food well now, he is having some reflux and spitting up, which would attribute to the desats. Occupational Therapy was ordered for Aaron today, but it wasn't the best day for it to start as he needs to be a little more calm to handle more touching. It was ironic that it was only ordered for Aaron when I believe William would have done great with it today. Per the therapist, the sessions will be daily and probably only last about 5 minutes each day. I'm still not exactly sure what the 5 minutes will involve, but hopefully we'll find out tomorrow for both of the boys.
Here's a bit more about occupational therapy for preemies, from http://preemies.about.com/od/glossary/g/occupationaltherapy.htm:
Definition:
Occupational therapy (OT) helps people of all ages to develop life skills. In the NICU, an occupational therapist works with staff and infants and their families to promote good motor development. Some ways an occupational therapist may work with premature babies include:- Helping infants learn to breastfeed or drink from a bottle
- Helping parents position very small infants in a car seat
- Performing infant massage
- Promoting good muscle development through careful infant positioning
- Encouraging good sensory development through appropriate stimulation
Here's a funny picture of William from yesterday...look at that face!
Aaron all snuggled in his bed:
A Good Week
This has been a great week for the boys - let's pray for another one! They have both recovered nicely from their PDA ligation, and are now eating and breathing well. They are both eating half an ounce every 3 hours, and should have their PICC lines removed within the next two days. This means that they will be getting all of their nutrition just through my milk (fortified with extra vitamins), the best thing for them.
Weight Check
William - 2lb 14oz
Aaron - 2lb 8oz
I'm starting to feel more and more like their mommy, and like I have three kids. Not that I didn't feel this way before, but the situation is just a bit unnatural. A few weeks ago, our primary nurse had asked me to fill out a sheet listing the boys' preferences - what stresses them out, what makes them happy, what we do for them. I was hesitant to fill it out (still haven't, actually) because I didn't feel like I knew them well enough yet...we're just there a few hours a day, but the nurses are there 24/7. They do rotate through different nurses, but I felt like their primary nurse would know them better or would disagree with some things that I'd say. The whole subject of that sheet, and every time she'd ask for it, made me unhappy. I'm happy/relieved to now feel like I know them better than all of the nurses!
Hopefully the updates will remain short for most days. We really want the boys to be at a point where they're just feeding and growing, with not much else to report :)
Weight Check
William - 2lb 14oz
Aaron - 2lb 8oz
I'm starting to feel more and more like their mommy, and like I have three kids. Not that I didn't feel this way before, but the situation is just a bit unnatural. A few weeks ago, our primary nurse had asked me to fill out a sheet listing the boys' preferences - what stresses them out, what makes them happy, what we do for them. I was hesitant to fill it out (still haven't, actually) because I didn't feel like I knew them well enough yet...we're just there a few hours a day, but the nurses are there 24/7. They do rotate through different nurses, but I felt like their primary nurse would know them better or would disagree with some things that I'd say. The whole subject of that sheet, and every time she'd ask for it, made me unhappy. I'm happy/relieved to now feel like I know them better than all of the nurses!
Hopefully the updates will remain short for most days. We really want the boys to be at a point where they're just feeding and growing, with not much else to report :)
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