Trial Off CPAP

A couple of days ago when I arrived at the NICU, the nurse for Thomas and Audrey mentioned that the doctors had just rounded and that they were going to trial the babies off CPAP that day. I laughed at the idea for Thomas, and sure enough, he didn't even make it to a trial because he had little episodes and required more oxygen later that morning. The attending physician walked by and told the nurse that Thomas was a "trouble maker." It starts early. Like father, like son. Audrey, on the other had, didn't skip a beat when they removed the CPAP. In fact, I think her stats are actually better now that it's off, along with all of the velcro tape that had been on her face. Her oxygen saturation has been 100 most of the time I've looked at it (which is a fair amount). Charlotte also seemed happy with the CPAP off, but after a day or so, she proved that she's not quite ready. I don't think it's long before she gets there, but I think Thomas might be 8lbs before he decides to breathe on his own. 

Thomas and Audrey had another round of eye exams this week, and both still have Stage 1 ROP; it's good news that it's not progressing, and we continue to pray that it ultimately regresses on its own. They'll be checked again in two weeks. Charlotte will have her next round of exams next Tuesday. 

Audrey might be "flying" as far as breathing is concerned, but she sure seems to have trouble gaining weight. They feed the babies based upon current body weight (standard formula that they use for all of them), so my hoped for theory is just that she has a faster metabolism and needs to consume more than their formula dictates in order to consistently put on weight (rather than the thought that there's something bad that's causing her to have this issue). They increased her feeds yesterday, and I'm hopeful that they'll keep them higher despite the fact that she's lost weight both of the past two days. She's still in her isolette, and I'm in no rush to get her out until she starts gaining a bit better. 

All in all, we're continuing to plod along in the right direction. Grateful. 

Charlotte, shy for the camera without her CPAP

Off Antibiotics, On Diuretics

Audrey has officially been taken off antibiotics. After more than 48 hours, the samples that were sent off to the lab haven't grown anything, so the doctors feel pretty confident that she doesn't have a bacterial infection. What an answer to prayer. She seems active and healthy. 

The attending physician decided today to put all three of them on diuretics (again for Thomas and Audrey, and for the first time for Charlotte). They all still have relatively large PDAs, and she's thinking that the diuretic will help them and enable them to be weaned off of the CPAP. Only time will tell, but I'm a believer given what I experienced in their behavior following the first round of diuretics a few weeks ago. 

They all continue to tolerate feeds and grow well. Thomas is over 2 kilos (around 4.5lbs), and Charlotte seems to be safely above 4lbs. Crazy. Audrey is bringing up the rear but is still more than double her birthweight. I checked the most recent lengths today as well; they're all within a couple of centimeters of one another with Thomas longest, Charlotte in the middle, and Audrey as the most petite.

Oh, and Charlotte has been off CPAP since earlier this morning. It's just a trial, but so far, so good :) 

Cautiously Optimistic

Audrey seems to be doing well, and we're cautiously optimistic that this was all just a scare. So far, there's no sign of infection (i.e. nothing has grown in the cultures from her blood or urine samples), and the most recent x-ray of her belly looked better than before. They started to feed her again, and she seems to be tolerating that well, but they're still waiting for her to poop (which is important). She'll stay on CPAP and in the isolette for now so that she can be lazy and not have to expend any more energy than necessary. Perhaps that's the reason that she gained 3 ounces in the past 24 hours! Either that or the nurse didn't get an accurate read ;)

Charlotte and Thomas are status quo, which is a good thing.  

Not So Fast

Audrey is back on CPAP and also back in an isolette. She started having brady and desat episodes yesterday afternoon, and they're not quite sure of the reason. Although her belly is soft, it is somewhat distended, and the x-ray results were questionable, so there's some concern of infection. They stopped her feeds yesterday (she has an IV in for nutrition), and they're starting her on antibiotics today; they want to be proactive and cautious as they try to determine what's going on with her. They'll do blood work, monitor her temperature and urine output (as they always do) and do more x-rays over the next 48 hours. Please pray against sickness, infection, sepsis...all scary things, especially for preemies. 

Look ma, no CPAP!

It was so amazing to see the babies today...all in cribs, all with several ounces more weight, and Audrey with no CPAP. What a milestone! May is already a big month for us, and it's only beginning. We're so grateful to God. 

Audrey, happy to be free and clear of the velcro and nose prongs of CPAP

Still Off CPAP

Audrey is still loving life without Velcro on her cheeks and prongs in her nose (aka CPAP). She's officially large enough (>1500g / 3lbs 5oz) to be considered for a crib, but they're going to let her hang out in the isolette for a bit longer rather than overwhelm her with too many new challenges.

Thomas had a bit of an episode earlier today and proved again that he's definitely dependent upon a bit of help with his breathing. He's just focusing his energies elsewhere I guess. He has surpassed the 4lb mark, so he's on his way to properly filling out his outfits. I have such a huge stack of clothes and blankets to take in with me once I'm allowed (Friday). I just need to figure out how to get milk there tomorrow; they're all eating so much that my supply in the NICU freezer got wiped out pretty quickly in my absence. 

Charlotte is a bit over 3.5lbs. They haven't tried to trial her off of CPAP again yet, but I imagine they'll do so in the coming days or week.  

Not much else is new. I miss them. I'm taking a z pack to kick this cold as thoroughly and efficiently as possible. 

Clothes!

Charlotte

Thomas

So Many Updates

So I haven't written in a while. There wasn't a lot that was changing. And then I got sick. I haven't been able to go to the NICU, and it seems like everything is happening while I'm away. Thomas and Charlotte are officially in cribs! Once this delinquent mom arrives with proper blankets, they will be sure to stay toasty warm, but they seem to be doing a good job with that already on their own. Thomas is almost 4lbs at this stage. Crazy. Charlotte is 3lbs 6oz, still ahead of Audrey who is lately bringing up the rear at 3lbs 4oz. But what Audrey lacks in weight, she makes up for in respiratory strength; she has been rocking life without CPAP since Sunday evening (over 48 hours)! This is not to say that she is free of it for good, but she certainly seems to be doing well thus far, so we shall see. Charlotte spent about half a day off of CPAP herself, but I think the stress of her eye exam this morning is what brought that to an end. Re: the eye exam, her "mild stage 2 ROP" diagnosis hasn't changed, which I guess is a somewhat positive finding. It's good that it hasn't gotten worse, so they'll go back to a 2 week follow up time, and we're praying that it starts going away entirely (for all of them). Audrey and Thomas will have their 2 week follow up next Tuesday. I'm dying to get back there, so here's hoping and praying that my sleep tonight does wonders for kicking this cold. I'll post some much delayed photos shortly too...

8 Weeks

The littlest Haugheys are 8 weeks old today. It's hard to believe how much has happened in that time. Audrey, Thomas, and Charlotte have nearly doubled in size and are progressing well towards cribs and breathing on their own. Will and I have received an informal education in neonatology and have purchased a 15 cu. ft. chest freezer for storing milk.

At the same time, there's a sense in which it feels like life has been on "pause." I think I could drive to the hospital in my sleep by now, but we've at least settled into a bit of a routine again, for now. Construction began last week for the nursery space above the garage, and the Honda Odyssey arrived today. The days and weeks feel full, but I know this is really the calm before the storm. And it will be here before we know it. 

Charlotte has surprised us all by passing into 3lb territory ahead of her sister Audrey. She and Thomas are both wearing clothes and quickly outgrowing them. All of them are still dependent upon CPAP but breathing mostly "room air" and having fewer episodes than they were a few weeks ago. They are heading in the right direction. Praise the Lord. 

As much as the past 8 weeks have held, I have a feeling that the upcoming 8 weeks will be even more monumental in some ways.

Stages 1 & 2

So Audrey and Thomas both have Stage 1 Retinopathy of Prematurity (i.e. ROP: abnormal blood vessel growth in the eye). It's mild enough that the doctor doesn't feel the need to see them again until the regular 2 week follow up. Charlotte, however, has Stage 2 ROP, so they'll follow up with her in 1 week. Apparently, they don't actually intervene and treat unless/until it reaches Stage 3 with "plus disease" (which is inflammation); they just watch. They said that Stages 1 & 2 typically resolve on their own, so here's hoping and praying for that and for no further progression of the condition. 

Charlotte continues to be just ahead of Audrey in weight, but both are on the brink of 3lbs. Thomas and Charlotte have both begun the process of being weaned from the temperature controlled isolette in preparation for an open air crib. They should all be in cribs by sometime next week, I would guess. Yay! 

Oh, and my mom is recovering from her heart surgery like a champ. She might even be able to go home tomorrow.

And Hannah is on medicine now and seems to be feeling a bit better. Whew. Here's hoping we sleep through the night tonight (literally just heard her wake and cry as I typed the last word of that sentence). Fingers crossed. 

Thanks for all the prayers!  

Round 2

Second round of ROP eye exams is tomorrow (Tuesday) morning. The vessels are likely not fully developed, but we're praying that they're still normal thus far. 

I didn't go in today because Hannah got sick late last night, and I spent the morning at the doctor's office with her. But all is well, and I got a few things accomplished around here too.

We have a new attending physician, but I have yet to meet her. She took Audrey and Thomas off the diuretics and sodium. And I think Thomas is starting back on clothes and lower isolette temperatures in preparation for a crib. Go Thomas! I guess it's time to get a few more micro preemie outfits for him :)

Charlotte is still above Audrey in weight (which seems crazy), and both are rapidly approaching the 3lb mark! Thomas is now 3.5lbs. Big boy.  

Praise

Nonnie's surgery went incredibly well. She's sleeping and recovering still now, but we'll be able to chat with her in the morning. Thank you so much for your prayers!  We continue to lift her up during this recovery period. 

Will held Thomas today-- first time for skin to skin with him-- and I held Audrey. Charlotte is now the SAME weight as Audrey (2lbs 12oz), and she tolerates her feed in half the time, so Audrey might want to watch her back. Only time will tell if the recent growth trajectories will continue. Regardless, they are ALL doing well. 

Sanity Check

So according to Charlotte's nurse last night, she now weighs 2 kilos, impressively surpassing both her siblings in an almost 900 gram jump in just one day. Obviously, said nurse didn't bother to sanity check her results since one look at Charlotte would expose the absurdity of claiming she was almost 4-1/2 lbs. Oh well. 

Audrey is believably up to 2lbs 11oz, and Thomas is at 3lbs 6oz. The last trustworthy weight for Charlotte was 2lbs 9oz, so while she might not be the leader in size, she's definitely catching up to her sister.  

In other comical nurse news, when a baby next to Charlotte was having an X-ray a couple of days ago, everyone ran away to the next room and instructed us to do the same, distancing ourselves from the radiation. My question was "what about the babies?!" No one really answered me at the time. Reassuring. Then the nurse brought it up later after chatting with her superior and said "it's not harmful, but we just step back because we are of child bearing age." What?! Now I feel better. 

Not much else has changed with the kiddos. They still have open PDAs and regular desat episodes (mostly self-limiting) and are just being closely watched by the attending physician in order to determine the best course of action. I've been holding almost everyday (we take 1 day off per week), and Will has been as well whenever he's able to be there. The occupational therapy woman keeps telling me that they are doing so well and that it has a lot to do with us holding them regularly. True or not, I'm grateful that we're able to do so. She has also been showing us other "positive touch" exercises that we can be doing with them when we can't hold (since there's not enough time to hold all of them each day). We're starting to try to engage their suck reflexes with pacifiers too. In a few weeks, they might start to try bottle feeding. And I think Thomas will probably move to a crib at some point in the next couple of weeks. May should be a big month. 

I've been a bit lazy lately on this blog, but in part, there just haven't been major updates to report. During stretches like this, I might not post everyday, so just assume that no news is good news ;-) 

Since all of your prayers are clearly powerful and effective, I also wanted to ask for prayers for these babies' Nonnie (my mom) as she has heart surgery in the morning to remove a benign tumor from her left ventricle. She'll be up and at 'em at 3:30am to get all washed (with antibacterial soap to prevent infection) and ready for the procedure, and we're guessing everything will be complete by midday. We're praying for a successful surgery without complications and a speedy and full recovery. She may or may not be looking forward to seeing some grandkids (in TN and CT) once she's fit to travel again :)

Flying

I remember one of the NPs commenting that Audrey was "flying" in those first few days in the NICU. In other words, she was surpassing expectations and doing everything she was supposed to be doing. I haven't heard "flying" much since that first week, but today, Charlotte's nurse used it in reference to her respiratory progress. And it's truly a fitting descriptor for all three of the babies right now. Their oxygen saturation levels are consistently higher these days with only 21% (room air) oxygen on the CPAP, and they almost always bring themselves right back up when they have dips in their numbers. By the time a nurse starts to look their way or walk over, they've recovered. Furthermore, the girls have both maintained excellent saturation levels without any CPAP at all (when it's removed for cares). Audrey's saturation was actually perfect (100) for much of the time I was there today. 

A fun, new development today is that Audrey and Thomas are starting to wear clothes now! And Charlotte won't be far behind. I'm going to take in the micro preemie clothes that I have for them now that they've made the transition. I promise to post photos :) In conjunction with clothes and swaddles, the nurses have slightly lowered the temperatures in their isolettes as they prepare them to eventually move to open air cribs. They closely monitor their temperatures, as always, in this process. So far, so good. 

All three are eating more than ever. Thomas is at 28cc, Audrey is at 23cc, and Charlotte is at 21cc. To put that in perspective, Thomas is consuming about 1oz per feed (8 times per day). Thomas is 3lb 3oz, Audrey is just shy of 2lbs 10oz, and Charlotte is 2lbs 7.5oz. Charlotte is tolerating her full feed amount in the one hour allotted, so they might try to reduce that time. Eventually, it has to be under 30 minutes. Audrey and Thomas, however, have both been needing more time; they have been at 2 hours, but the nurses are trying to wean that down. Please pray that that is successful...and that they all continue to "fly."

32 Weeks

Today is the day I was going to deliver...the way I planned it.  

Proverbs 16:9

"The heart of man plans his way,
but the Lord establishes his steps."

God had a different plan for us, and I'm grateful today for 32 weeks for Audrey, Thomas and Charlotte. They've been in the NICU for over 6 weeks now and have come such a long way. So many have prayed for them (and for us), and God has been gracious to us all. We have seen Him at work and have been granted faith and gratitude in a time that apart from Him would be full of anxiety. 

2 Corinthians 1:11

 "You also must help us by prayer, so that many will give thanks on our behalf for the blessing granted us through the prayers of many."

All of you prayer warriors can give thanks on behalf of us Haugheys for the blessings He's given us in answer to your prayers. We are encouraged and reminded in this time of the blessing of intercessory prayer. I hope that you are blessed by seeing your prayers for us being answered so tangibly. Thank you. Praise be to God. 

3lbs

Thomas weighed 1360 grams this morning, and 1361 is officially 3lbs. Now, he'll likely dip back below that again before being securely in 3lb territory, but it's still exciting. Audrey is now 2lbs 8oz, and Charlotte is 2lbs 5oz. Good progress! 

Audrey's murmur was louder this morning, but that still might mean that it's in the process of closing. As it narrows and the flow is restricted, the blood actually travels thru faster (like water thru a hose when slightly pinched) and the murmur gets loud again. We will just have to wait and see. That's sort of the name of the game these days. There's nothing too new for the Haughey babies each morning as the doctors make their rounds. But today was another good day with 21% oxygen and good saturation levels (in the 90s) all around. Grateful. 

Smaller Murmur

Audrey's heart murmur is smaller now than it was, which means that her PDA might be closing. What an answer to prayer! She now has the smallest murmur, followed by Charlotte and then Thomas (his is still quite large). All that said, all of them are doing well from a clinical perspective, so maybe even the largest PDA won't be a real issue. Even still, we'll keep praying for them all to close soon.

Between a morning meeting and the need to get back to Hannah in the afternoon, I didn't have enough time to hold any of the babies today, so I took the opportunity to simply give "positive touch" (as the OT specialist referred to it) while talking or singing to them and praying over them. Since we haven't been holding Thomas as much (per the doctor's recommendation), I spent the most time at his isolette. However, when I spoke with the doctor today, he commented that both Will and I are "very gentle with the babies" so he is okay with us holding ALL of them. Something tells me Thomas is going to be held by his daddy on Friday :)

No ROP

None of the Haughey babies have ROP at this stage. Praise God! They will all have a follow up exam in 2 weeks. When I was reviewing the results with the nurse this morning, I asked if there is a lower likelihood of developing ROP now that their first screening was negative. Apparently, there's not :-/ But we're still grateful for a clear report thus far and pray that God would continue to knit them together just perfectly, especially those blood vessels in their retinas.  

The eye exam itself is said to be pretty bothersome / stressful for the babies, so we were prepared for them to have tough days full of A's, B's and D's (apnea, bradycardia, and desaturation). However, they've actually had great days, following great nights last night. They're on mostly room air and are having infrequent self-limiting episodes. Yay!

They all gained weight too, but once I translate it from grams to ounces, it seems pretty insignificant, so I'll stick with only posting weight updates every few days ;-)  

Eye Exams

Audrey, Thomas and Charlotte will all have eye exams tomorrow (Tuesday) to look for Retinopathy of Prematurity (ROP). Basically, ROP is when the blood vessels in the retina don't develop properly. Prematurity is the most common cause of ROP, so our micro preemies are certainly at risk. Apparently, 60% of premature babies have some level of ROP. However, 90% of those cases are mild and relatively insignificant. The other 10%...those are severe and might even cause blindness. So we're praying that our little ones are in the 40% of the first statistic: totally clear of ROP altogether. 

Charlotte finally surpassed the kilo mark! She's 2lbs 4oz (1010 grams). Audrey and Thomas both gained a bit as well, so they're at 2lbs 6oz (1085g) and 2lbs 14oz (1300g), respectively. Thomas had low sodium levels at the last couple of readings (which is common during diuretic treatment), so they decided to give him a saline solution via IV. He and Audrey are both on diuretics and will likely stay on them for the foreseeable since they seem to help with the symptoms of their PDAs. Charlotte, on the other hand, hasn't needed anything like that. Totally unrelated, her stomach looked a bit large as we were leaving today. However, there doesn't seem to be any cause for concern given that she is feeding (and stooling!) as she should. There's nothing like newborns-- especially preemies in the NICU-- to get you thinking and talking about gas and bowel movements. 

Boring updates are good updates these days. So I'm not really sorry for boring. Thank you for your prayers!!

Weight Update

It seems safe to say that Charlotte is securely over 2lbs at this stage. In fact, she's just shy of the kilo mark at about 2lbs 3oz (990 grams). Audrey is 2lbs 5oz, and Thomas is 2lbs 13oz and finally moving in the right direction again. Both Audrey and Thomas had either stayed flat or lost weight since going on diuretics, until today. Today was also the first time that the nurses had to request more milk; historically, I felt like I was just crowding their freezers because our babies were eating so little. But now they are actually tearing thru it (relatively speaking)! I heard at one point that they'll start to gain close to an ounce per day once they reach their max feed amounts...we should be at that stage now, barring any new issues. 

Audrey and Charlotte did a great job with kangaroo care today. They both had some tachycardia and desats, but they seemed to be signaling something in each instance (ie too hot, desire to roll over, etc.). I don't know who was sleepier during cuddle time, the babies or the parents! Hopefully, mom and dad can get some more sleep sometime soon. 

Thomas stayed in his isolette today, but he's doing well and seems to be back on track. He practically rolls over on his own at times, and he's definitely found his voice ;-) 

We'll see the attending physician tomorrow (they're not typically around on weekends) and get his read on everyone as well.