July 31, 2010

PROGRESS!!! He's off the ventilator!

Andrew has officially been off the ventilator for over 24 hours! He's now on CPAP - continuous positive airway pressure. This machine has a mask that fits over his nose, which provides oxygen and pressure to him to help expand his lungs, but all breaths need to be initiated by him. This is different than the ventilator, which would breathe for him when he forgot or got too tired to breathe. This is a great step forward for Andrew - he's doing a great job but working hard, so he's getting a series of steroids to help with lung inflammation. This will hopefully help his oxygen and pressure requirements. If they drift up too much - or he is having problems getting rid of CO2 (evident in blood work done periodically) he will have to go back on the ventilator.

The funny thing about CPAP is that although it is less support, the equipment looks even worse than the vent. He's now wearing basically a soft "helmet" to hold the tubes/mask in place. It looks like an old-school football helmet! Also, with the mask, we can no longer see his cute little nose, but we finally got a better look at his little mouth! In this picture, he's sucking on a pacifier too, which helps him keep his mouth closed. (If his mouth is open it allows some of the pressure to escape, which makes the machine less effective.)

The move to CPAP actually happened a little sooner than expected. Over the last several days, the nurses noticed a small air leak in his vent tube. He was actually out-growing the tube, which resulted in a loose fit in his throat. The air leak was making the vent a little less effective, and obviously irritating him. He had become more and more irritated over a few days - not tolerating hands-on, wiggling around a lot, and desatting much more. I mentioned his big desats in the last post - well, they continued. Yesterday, my mom and I witnessed a very scary one - his oxygenation level dropped to single digits, and they needed to bag him for a minute or two before they could get it back up. He was definitely fighting the tube, we could see him basically tensing up and clamping down (not breathing) multiple times that day. After that episode, and an afternoon of more downs than up, the doctor decided to extubate him, and try him on CPAP.

Dr. K figured if they were going to have to put in a bigger tube, they might as well give him a chance on his own. Andrew's been breathing over the vent more and more in the past week, so there had been talks of trying him on CPAP sooner than later anyway. And, about a week or so ago, Andrew dislodged the tube himself one afternoon, and got a chance at CPAP for about 4 hours before he tired out. We hoped he would make it longer this time!

For the first few hours on CPAP, we weren't sure he was going to be strong enough for it. When we left last night, his oxygen requirements were super high - 90%. We were discouraged, worried to see him struggle, and felt for sure he'd be back on the vent this morning. But, when we called for an update around 8 a.m. we were pleasantly surprised that he made it through the night and lowered his oxygen into the 70's. When we got to the hospital in the morning, he was down to the 60's, where he remained for most of the day (when we left our evening visit, he was at 59%). The good thing is that he is much calmer without the vent tube - and while he is still has desats, they are small and he resolves them on his own. They won't let him stay on CPAP with super-high oxygen requirements though, b/c that is not good for him, so we are hoping that the first dose of steroids kicks in and allows his current requirements to drop even more.

We are really so happy that he has done this well breathing on his own. Even if he does have to go back on the vent, it is heartening that he's done it this well for this long. It's amazing how much stronger he is everyday. This boy just continues to surpass our expectations. The past few days have been a roller coaster, that is for sure. But, progress has been made! Keep it up, Andrew!!

July 28, 2010

Happy One Month, Andrew!!

It's hard to believe that Andrew is one month old today! We celebrated with a visit from Aunt C and Uncle J. It's been so nice that our entire immediate family has met him now - we really appreciate everyone making the trip from Ohio, the Cape, and NJ this past month to see him.

J & C brought a little gift from my adorable niece and nephew for Andrew - a sign and a picture, which made me cry when I first saw it. So cute!
Since the sign is a little too big to put up in his isolette, we decided to hang the picture of them holding the sign in there instead so that his cousins are watching over him. We'll keep the sign for his room at home! Thank you Julia and Christopher - we can't wait until you get to meet him!

We decided to mark the occasion of his one-month birthday by making his awesome nurses muffins. J & I are both so happy with the care he is getting - and the nurses are just top-notch. He has about 6 or 7 nurses who have signed up to be his primary (meaning they get priority to work with him on their shifts) and we really like them all. They have really gotten to know Andrew too, and you can tell they are all wishing the best for our little man. The muffins were the least we could do to show our thanks for making our life a little better this month.

Today, we did a few photo sessions to mark the occasion. The "1 month" sticker is supposed to go on a onesie, but A is too small for them still, and can't wear clothes just yet (as long as he has a main PICC line, it can't be covered up). So, we improvised by holding it up and laying it on his bedding. I'm betting that next month he'll be wearing it! The little hat he is wearing in this picture was a gift that one of my sorority sisters knitted for him - I wish you could see it better because it is sooo cute. He wasn't being too cooperative for the evening shoot - he was wide awake, but as soon as we started snapping pics, his eyes snapped shut! That personality of his is starting to show! When we came back in the evening today, he had a new IV in for a blood transfusion, so he also had a few more lines to contend with for the pictures. Sigh...the life in the NICU.

No other big updates today. It was a good day. J & I are so thankful that Andrew is with us and doing so well after one month. He is such a strong boy, and we can't wait to see what the next month brings! We love you, Andrew!!

July 26, 2010

Ups and Downs

Well, today was a day of ups and downs. We'll start with the ups - those are pretty exciting!
  1. His repeat head ultrasound was today, and it showed that the bleeding has lessened and is beginning to resolve itself! That was such a relief to hear.
  2. He is still rocking the feedings, so they have decided to supplement the breast milk with fortifier to add some calories (normal breast milk has 20 cal per oz, they can supplement to make it 22, 24, up to 30 cal/oz to help preemies put on weight.) He's now getting 22 cal/oz and hopefully he will tolerate it OK.

And for the down...

He had some pretty severe desats today. Severe, like his oxygen levels dropped from his normal 80 - 95% down to the teens and 20's. Pretty scary. In the morning, he had a couple episodes, which we weren't there for. They couldn't figure out why they were happening - apparently the nurses and Dr. K looked at all sorts of things - his tube placement, his blood gasses (levels of CO2 and other things in his blood), his lung x-rays, etc. Everything seemed normal. Dr. K didn't want to increase his settings on the vent too much, so he decided to put him on a nebulizer - albuterol - which would help with inflammation of the lungs. That is a common problem for babies on a ventilator for an extended time, and the treatment seemed to help. When John and I were there in the afternoon, he was doing much better. We, of course, take each setback pretty hard, and it is so disheartening (and scary) to see our little man struggle.

When we came back in the evening, Andrew gave us a show of our own - having another major desat when we first arrived, when the nurse flipped him from his belly to his back for his hands on/diaper change. Luckily, our nurse and one of the respiratory therapists were right there, and got him back up to normal levels quickly. Episodes like this remind us that we are really in a top-notch NICU. They handled the issue calmly and effectively, while at the same time reassuring us. After scaring the crap out of us for the second time that day, he was a complete angel the rest of our visit - behaving perfectly the entire time and looking absolutely adorable.

Here's Daddy giving Andrew some love this afternoon. Andrew was zonked out!

And, a funny picture from last night. J & I joke this is the way he is going to look as a teenager, as he sprawls out on the couch after a tough day:

I'm gathering a collection of pictures of his various "nests" that the nurses make to prop him up and keep him contained. They each have their own twist on it - from raft-like, to the hotel bed, to the straight-jacket. Something to look forward to in a future post!

July 25, 2010

2 lbs and 4 weeks old!!

Andrew continues to eat well - his feeds are up to 3.2 ml/hr and he hit a big milestone today - over 2 pounds! He weighed in at 950 gms - 2lbs, 2 oz. Go Andrew! Tomorrow, he will be 4 weeks old - in some ways the time has gone so quickly, but it already seems like he's been part of our lives forever. This is the little man sleeping soundly today, and holding mommy's hand like a good boy!

The last few days have been fairly uneventful in his life - which is a good thing. He is continuing to have desats on the ventilator (when his oxygen levels go down) but they have not been severe, and he usually can recover on his own (without the nurses turning up his vent settings, or giving him manual breaths through the vent). His vent settings are still moderate, and the doctors are ok with them for now. We'd love it if the next several weeks are like this - uneventful - with him just growing and getting stronger. Is that too much to ask?

Yesterday, three of my BFFs came to visit and to meet Andrew. They came with clothes, books and blankets for him, and made J & I a yummy dinner with plenty of leftovers...thank you so much! It was so great to see you all!

I don't know how happy the nurse was to have rotating visitors for a few hours, but it was great for J & I to have them there and to see our son. Andrew was on good behavior, showing off a bit by opening his eyes, displaying his downward dog position, and wiggling away for the girls. He was an active little guy today, and they couldn't believe how much he moved around! Jackie took a short video of his antics:

So, I mentioned in an earlier post that I have been pumping so they can feed Andrew with breast milk. Well, we've reached maximum capacity in our freezer. This picture just shows the top shelf of our freezer - there are multiple bags of milk in the bottom too with less and less space for food. Right now, I'm pumping way more than he can eat, and the NICU will only hold so much in their freezers. J took this as an opportunity to make a purchase - a 7 cubic foot deep freezer for our basement! We'll never fill the thing, but at least we will have a place to keep the milk - and to stock up on bulk meats in the future (hello, Omaha Steaks!!)

Thank you to everyone who has continued to ask about Andrew, and to send thoughts and prayers our way - they seem to be working!! We think Andrew is having a follow-up ultrasound in the next few days on his brain. While he didn't have any bleeding on the brain at birth, when they did an ultrasound at around 2 weeks old they did discover one. It is classified as a Level 2 bleed, which scared the crap out of us, but the doctors aren't too worried about - as long as it doesn't get bigger. Usually, level 2 bleeds resolve on their own, and cause no lasting damage developmentally. The more severe bleeds (L3 and L4) can cause significant problems, so we are nervous and hopeful that there are no changes in this follow up exam. (They have done one other ultrasound since they discovered the bleed, where there were no changes, so let's hope that continues.) I keep you all posted on the results when we get them.

July 23, 2010

Stats and Stuff

Since those of you who know me well know that I believe "Math is everywhere" I thought it fitting to start off with some stats:

Birth Stats
DOB: June 28, 2010, 12:07 a.m.
Weight: 640 grams (1 lb 6.5 oz)
Length: 12" (?)
Gestational Age at Birth: 23 weeks, 5 days

Today's Stats
Day 25 of life
Weight: 860 grams (1 lb, 14 oz)
Feeding: 2.4 ml of breast milk per hour (continuous feeds)
Peeing and Pooping like a champ!

Today was a good day. Actually, we've had mostly good days for over a week now. They talk about the NICU roller coaster, so we are wondering when he is going to have a down day again. For me, a planner, this is one of the toughest things about the NICU - not knowing what is going to happen tomorrow, much less weeks from now. For now, his doctors seem pleased with his progress. There are two big, general areas of concern for most preemies at this age - respiration and feeding/nutrition. We get daily updates from the nurses and his doctor regarding his progress, what they'd like to see happening next, and what is coming up with his care.

His feedings (though a tube into his stomach) have been going really well - they continue to increase the amount he is getting and he is tolerating the breast milk well. Finally, all the pumping I am doing (I'm am attached to the pump night and day, it seems) means something! I truly hate it, and usually end my last pump of the night cursing to John about it. He hates it too - ask him how he's spent most of the past three weeks, and I'm sure he'd say washing pump parts! But, it is so good for Andrew - they say that the benefits are even more important for preemies than full-term babies - that it is something I intend to keep up with at least until he comes home. The nurses closely monitor how he is tolerating his feeds - there are some very scary issues for preemies around digestion, their bowels, and feeding - by observing (and recording) all wet/dirty diapers, measuring his girth around the stomach (to see if it is distended at all), feeling his belly, and through daily x-rays of his intestines. Luckily, it seems so far Andrew has inherited his mom's healthy bowels, and has been providing at least one dirty diaper a day. J & I have the pleasure of changing many of his diapers - I'm surprised every time how much can come out of a baby that weighs less than 2 pounds!

His respiration isn't quiet as stellar as his feedings. He's been on a ventilator since birth - not really unexpected, since at his age his lungs are not fully developed yet. The ventilator provides help in several ways - it can increase the amount of oxygen he gets (we breathe 21% O2; he can get up to 100%, but has ranged between about 24 and 50% O2.) In addition, the vent provides pressure to help the little guy inflate his lungs. Finally, the machine can initiate the breaths for him if he is too weak or tired to do it on his own. We've noticed over the past few weeks that the amount of breaths he is taking on his own have increased, indicating less reliance on this aspect of the vent. His settings at this time (and really his entire life so far) have been moderate, but he's not quite ready to move to the next level down in the breathing department - the CPAP machine. We are looking forward to this step down in assistance, b/c usually babies on CPAP are stronger, and can be held more often.

Yes, one of the most difficult things about the NICU so far is that J & I haven't been able to hold Andrew yet. 25 days old, and no snuggles, no cuddles, no kisses! We are able to touch him (he likes when we cup his butt/arms/or head - it is soothing to preemies b/c it simulates the containment of the womb) and we both helped lift him up when they changed the bedding after one of his baths, but it is not the same thing as holding him. We are getting closer to this moment (I asked the doctor today) but as Dr. K put it "There is going to have to be a well-coordinated effort to make that happen." We need to be careful of his tubes, IVs, and monitor leads (and make sure he doesn't get too cold outside of the isolette) but I can't wait for that moment!

Enough for tonight...my pumping is finished and I'm going to try and get some rest. Tomorrow is a big day - three of my best friends are coming to visit and to meet Andrew. We all need to be on our best behavior, and we've warned Andrew of this already! I know their visit will do a lot to rejuvenate me too. I'm looking forward to seeing them all!


While I never thought I'd be a blogger, with the recent sudden addition of Andrew to the family, I figured this would be a good way to reach out to all our friends and family to keep them posted on his progress. We have received so many prayers, positive vibes and good wishes that is a bit overwhelming, and we felt it's only right to keep people updated if they are interested.

I'll add posts with more backstory of my pregnancy and his birth in the coming days.

Also, this blog will serve as a great reference of what we are going through during his NICU journey, and hopefully after we bring him home. After only three weeks so many dates and details are blurred (due to exhaustion and stress, I'm sure!) that we are already having a hard time remembering. And, while Andrew's arrival was not what we had planned, not how we had imagined our first days as a family, and not what we wished for as far as his birth, Andrew is here, he is alive, and has already brought us so much joy. We want to capture that!