"I'll tell her you called!"

We had a bit of a scare today with Thomas. He had an abnormal temperature and a distended abdomen and actually threw up. They stopped his feedings and ordered full blood work as well as a stomach and chest X-ray. Thankfully, the blood work all came back totally normal, and the initial read on the X-rays was the same (they're still pending final results from radiology). He resumed feedings this evening and has been doing well since then. Although he's still the chubby one of the crew, he's actually down a couple of ounces (to 2lbs and 12oz) from his high a few days ago. But weight isn't the most important factor right now. His respiratory performance has been pretty strong. He's ever so slightly above "room air" at 22% on his CPAP. 

Audrey is just shy of 2lbs 5oz and is doing quite well on just 21% oxygen. She continues to tolerate her feeds, and her desats are generally self-limiting. 

Charlotte is quickly approaching a kilo and is currently just shy at 2lbs and 2.5oz. She's been anywhere between 21 and 23% oxygen and has had mostly self-limiting desats. Her night nurse seemed pleased with her when we called after dinner and assured us by saying "I'll tell her you called" as we were saying goodbye. I'd like to think that all of the nurses are chatting with our little ones as if they could understand. And we hope too that they can actually understand, in some unconscious way. 

Room Air All Around

Today was a great day for all of the kiddos. Audrey and Thomas seem to be still enjoying the effects of their diuretics, and Charlotte is behaving similarly without any drugs to help. They're all breathing room air and having only minimal desats, almost all of which are self-limiting. And they're tolerating their feeds well. Thomas is finally up to his max feed amount too, so I'm guessing he'll start to gain weight again soon, maybe even tomorrow. Will and I held Charlotte and Audrey, respectively, and they did beautifully. They both have a bit of tachycardia on occasion, but no one seems to be concerned. Overall, the doctors and nurses are quite positive. The attending physician was chatting with us yesterday about how pleased he is with how they're doing and how he expects that they'll go to Harvard some day...of course, Will amended that sentiment to Stanford. Either way, this mom is happy at the thought and so grateful for their tiny steps of progress this past month. 

Charlotte saying hi to daddy just before being cuddled

Holding x 2

I got to hold Charlotte today! Will and I had an appointment with the physical and occupational therapist about what we can be doing to promote the healthy development of our little ones while they're in the NICU. As part of that, she helped us in the process of kangaroo care with Charlotte (and with Audrey for Will), and it was a game changer. Rather than having the nurse transition the baby from the isolette to my chest, she had me lift her directly. This method made for a much smoother and calmer transition for everyone, with no desaturations at all. Yay! Charlotte did a fantastic job. Even when she moved around and knocked off her CPAP entirely, she maintained great oxygen saturation. While she slept, I read my book out loud (softly) to her so that she would hear my voice. 

Last night, when we called into the NICU from bed, we had been told that Audrey was not tolerating her feeds. They had stopped feeding her entirely and had put in an IV to give her all the essentials while they assessed her condition. Ugh. We went in today uncertain of her status but praying against disease or infection. Thankfully, there was no sign of anything bad in the gut, and they decided to resume her feeds. We're praying that she starts tolerating them again, in their entirety. In other news, it was clear today from her oxygen needs and saturations that she responded well to the dose of Lasix. As such, the doctor is actually considering putting her on a different diuretic that she could stay on long term (Lasix is too strong for prolonged use). 

I know I had assumed yesterday that Thomas also received Lasix, but he was actually put on the alternative diuretic for longer term treatment. He responded well to it and was quite stable today from an oxygen standpoint. All that said, the doctor is most concerned with him as far as respiratory condition and PDA are concerned. Will was actually planning to hold him until the doctor strongly suggested Audrey instead (after our nurse had said "no" to holding Audrey but "yes" to Thomas...oh, the politics and heirarchy of the NICU). 

2lbs and Growing

So Charlotte has finally joined her siblings in surpassing 2lbs in weight. It's been a long time coming (and she might dip below again), but I think she's off to the races at this stage. According to the attending physician, "Charlotte doesn't know that she has a PDA." In other words, she's totally asymptomatic. As I said yesterday, she's the strong one.

Thomas and Audrey, on the other hand, are both showing signs of their PDAs. Apparently, blood transfusions are good for almost everything...they actually make PDAs worse. Higher blood flow makes the opening larger. And both of them recently had transfusions. So there's that. They both are going to have echocardiograms and chest X-rays to assess the extent of the problem. In the mean time, they started on diuretics. I know Audrey was on Lasix, so I'm assuming that's what they both got. It seemed to take effect for Audrey within a few hours (at least, she peed a lot!), but the jury was still out for Thomas.

Audrey's desat spells are classic PDA desats; she'll have saturation levels in the mid 90s, suddenly drop to the 70s, and then pop back up again to the 90s. This is indicative of simply shunting blood thru the PDA. The attending physician added a second oxygen saturation to their monitors so that he could look at levels from two different areas of the body and be able to assess if pressure is getting too high in the lungs (early sign of congestive heart failure, I believe). If needed, they'll move to surgery to snip the PDAs. Pray, pray, pray for all of those PDAs to close!

Despite the PDA and regular desat episodes, I was able to hold Thomas today, skin-to-skin! He's pretty dependent upon his CPAP, but he did well outside of his isolette with me; I'm grateful for that.

It's a funny thing for holding your child to be so stressful at times, but that's been true thus far. The transition from inside the isolette to my arms requires a lot of disconnecting and reconnecting of probes and CPAP, and that invariable leads to beeping monitors and suboptimal vital statistics. If I become tense about it all, that only serves to make the baby tense as well...and that leads to continued suboptimal saturations and/or heart rates. So the first few minutes are basically a lot of me praying for God's peace for both of us and for God to give everything that is needed for heart and respiratory function. So far, so good. They settle in, get cozy, fall asleep and stat well overall for the remainder of the time. But it's definitely a different experience from holding Hannah just after birth...

Transfusions

According to one nurse, transfusions are a bit like "red bull" for the babies. When needed, the added blood seems to help them in almost every way. Thomas received one yesterday, and Audrey today. Their coloring looks better and their heart rates and oxygen saturations seem to be improved as well. Audrey had some tachycardia (an abnormally high heart rate), so we're praying that it was due to low hemoglobin (which would make her heart work harder to maintain oxygen saturations) and not due to any sort of sickness. If the former, the tachycardia should go away with the transfusion. She received nutrition thru an IV during the transfusion (nothing by mouth during that time) to help maintain her weight of 2lbs 4oz. 

Charlotte is still 1oz away from 2lbs, but the new attending physician (they rotate every 3 weeks) said I shouldn't worry about size. He affirmed Charlotte as being the strongest from a respiratory perspective, and that is the most important thing to consider at this stage. I sort of knew that already, but I still want her to grow so that I can hold her! 

Apparently, white caucasian males are often referred to in the NICU as the "wimpy white boys" because they tend to have the hardest time with prematurity. This stereotype of weakness in comparison to females has certainly played out with our small sample size, with Thomas lagging behind his sisters (for now). All that said, I still think he's pretty strong. He had his picc line removed last night, so he and his sisters are now all receiving 100% of their nutrition orally. He's up to 20cc per feed, which is still a bit away from his max feed amount, but at 2lbs 14oz, he should be able to withstand a day or two below his full amount. Timing didn't work out to hold him today, but I should be able to do so tomorrow!

Over and out.  

Audrey all tuckered out after being stuck multiple times for a transfusion as well as parenteral nutrition. The blood pressure cuff is part of the process with transfusions. 

Kilo Kangaroo

Audrey hit 1 kilo at her last weigh in, and I was able to hold her skin to skin (aka kangaroo care) today. What a milestone! She did wonderfully out of her isolette (oxygen saturation between 98 and 100 most of the time), so hopefully we will be able to hold her from here on out. Her little movements on me seemed familiar-- just not inside of me anymore :)

Charlotte's nurse thought she should get closer to a kilo in weight before we hold her; she's at 830 grams but is at her max feed amount of 17cc, so she should gain regularly each day. Her oxygen needs remain low, so size seems to be the only limiting factor right now.

Thomas, on the other hand, was requiring too much oxygen for his nurse to feel comfortable with us holding him; his PDA is the largest of the three, and it seems to be affecting him a fair amount. That said, he's plenty big at a chubby 1250 grams (and he's only at 15cc per feed at this stage too).

We're praying that those PDAs close and that we're able to hold all of them soon!

Holding Audrey

We were able to hold Audrey today! Our timing was somewhat limited, so we held her all swaddled up instead of skin to skin, but it was still awesome. She did so well outside of her isolette, maintaining her temperature and vital statistics, and she should only do better with that when she's skin to skin. Apparently, they get so cozy when skin to skin that they fall right asleep, so it's best to keep them there for an hour to let them get thru a full sleep cycle. That's our plan going forward. We're planning to hold them (and have family and friends hold them) as much as possible. 

They are all progressing on their feeds and will soon reach the total amounts that they should be eating based upon their weights (which will of course change regularly as they continue to grow). Actually, Charlotte is already at her maximum feed amount (15cc per feed) because she's so tiny. Thomas almost looks chubby compared to her! But they are all growing at their own, just right pace. We look forward to cuddling all of them in the coming days and weeks. 

Holding and praying for Audrey

All Clear

All three of the brain ultrasounds were totally clear!!! :) 

The girls are about the same weight as before, which is apparently normal for when the picc line is removed. They should start to gain again soon since they are both eating well and tolerating the fortified milk. Thomas is still gaining and continues to increase in his feeds as well-- up to 8 or 9cc every three hours at this stage-- so I'm guessing that he'll hit 3lbs within the next couple of weeks. 

They were all behaving a bit out of character today, with Audrey acting up the most in terms of desats. Hopefully, it was just a one off day and she'll be better tomorrow. They're all hovering between 21 and 25% oxygen, for the most part. 

We're tired. But we're looking forward to a visit together tomorrow and to potentially holding one of them. Stay tuned...

4 Weeks

The babies are 4 weeks old today. It's hard to believe it's already been almost a month. They're still itty bit, but they are tracking well.  

Audrey: 2lbs 1oz

Thomas: 2lbs 8oz

Charlotte: 1lb 13oz

Both Audrey and Charlotte had their picc lines removed and are receiving all of their nutrition via fortified breastmilk (24 calories per ounce instead of 20). Audrey's sugars were low at first when she came off the Parenteral Nutrition, but they seem to have come up on their own, so it looks like she won't need any supplement to the milk. That's the prayer for both of them, and eventually for Thomas as well. He's slowly moving up in his feeds but is still getting a fair amount of nutrition thru his picc line. 

Given their age, they all received another round of head ultrasounds today. The nurses are not allowed to give preliminary results on the spot, but I did get a wink from the examiner when she was finishing up with one of them ;-) We're praying that they all remain completely normal and free of any bleeds. 

Oh, and Charlotte's diaper rash is finally going away. Good riddance to it!

Tracking Well

Everything is moving in the right direction. Charlotte and Thomas are up an ounce each in weight. All three are eating more than they were yesterday and are slated to increase again tonight. Audrey's picc line is scheduled to come out tonight, and Charlotte's will come out in the morning if her sugar levels look good. They all seem to be stable or improving in their oxygen requirements as well. We couldn't ask for much more, so we receive these updates with great thanksgiving.  

2 over 2

So Audrey has joined her brother in the 2lbs and over camp :)

Although Charlotte is several ounces behind at 1lb 11oz, she is the first one to be taken off of nutrition via her picc line; she is receiving and tolerating all that she needs thru her mouth. Yay! She's receiving milk that is fortified to have a few more calories per ounce and is slated to move up to 10.5cc per feeding. That said, she's going to get a blood transfusion tonight, so feeding will stop for about 12 hours. Assuming all goes as planned, the picc line might come out entirely within a couple of days. 

Audrey is just behind her sister in this area, receiving significantly less thru her picc line as her feeds are increasing. She's slated to move up to 11.5cc per feeding, and her picc line might be removed later this week as well. Removal of the picc lines gets me one step closer to being able to hold them!!

Thomas is slowly progressing in his feeds; he's slated to go up to 4.5c per feed. Please pray that he would tolerate his feeds and be able to increase volume as quickly as they allow and that his oxygen needs would decline. His PDA is still quite large (probably the largest of the three), so that's not helping matters with regard to his breathing and desaturations.

Overall, we're encouraged by weight gain, excited about the possibility of holding them, and hopeful for progress in a few key areas. Please pray that all of their PDAs would close on their own, and soon! And pray for all rashes to go away as well, especially for Charlotte. Thank you for joining us in lifting up these little ones!

Happy Easter

I'm reminded today that we are fully dependent upon Jesus for life: true life with Him. I've often reflected these past weeks on the helplessness of our babies at this fragile stage in the NICU and have forgotten that I am similarly helpless on a larger scale. What a comfort it is to know that the same love that kept Jesus on that cross penetrates our hearts today, and the same power that raised Him from the dead is at work within us. He loves our little ones far more than we do, and He "is able to do far more abundantly than all that we ask or think." Our position of complete dependence is actually the most secure place we could be. 

We're grateful to Him for another good day. They're all eating more and weighing more. Audrey is only about .5oz away from hitting 2lbs! Diaper rashes are improving, and all of the cultures are still negative. I consider it to be a miracle that there hasn't been any more trace of staph found on Charlotte, despite the fact that she had a skin infection that tested positive only a week ago. God is good. 

Chill Day

We didn't go to the hospital today. Sometimes, we just need a quiet day to relax, play with Hannah, and regain a bit of energy (visits to the NICU are surprisingly draining). 

That said, the babies have had a great day, so we're feeling encouraged as well as rested :) They're all eating well, in increasing amounts, and breathing about the same as they have been. The irony of Charlotte being the last to go onto CPAP is that she requires the lowest oxygen settings of them all now, typically just slightly higher than normal room air. Go, Charlotte! Diaper rash issues seem to be getting better, or at least not worse, and all of the cultures are still pending negative. 

We're in NYC (thanks to generous friends who offered up their apartment while they're away on spring break), so we're enjoying city life this lovely Easter weekend and grateful for another good day for the littlest Haugheys. 

Pending Negative

All of the cultures for are "pending negative" for MRSA at this stage. In other words, they haven't grown anything in 2-3 days, so it's unlikely that they will, but they let it run for 5 days before declaring an official negative. Praise the Lord. The only positive found thus far was a small number of enterococcus species from Charlotte's groin area that should be wiped out by the antibiotics. None of the blood cultures show anything. Yay!

Otherwise, things are somewhat status quo for all three of them. Thomas is up to 2cc, Charlotte to 6.5cc and Audrey to 7cc of milk every 3 hours. Assuming they all continue to tolerate well, their feeds will increase by .5cc every 9-12 hours. Thomas is still rocking his status as the first one to hit a kilo in weight. Charlotte is over her birth weight at 1lb 9.5oz. And Audrey is up to 1lb 14oz. Braddies and desats for all of them have been about the same as before. 

We're still praying for those final culture results to come back negative and for all of the PDAs to be closing on their own.  

Desaturations

Audrey had been having more frequent braddies and desats last night, so they checked her blood counts and decided to give her a transfusion. She finished the transfusion a bit earlier this evening. She was still having episodes during the day today, but the nurse had also weaned her down to 22% oxygen so she was having to work a bit harder to maintain her oxygen levels. The nurse also commented that Audrey gets a lot of air in her stomach from the CPAP and that that can increase the pressure on the lungs and make it harder for her to breathe, so she's been aspirating that air regularly to try to help. Audrey hasn't been eating because of the transfusion, but they plan to start her back up at 6.5cc later tonight. She was fast asleep when I saw her, sleeping as she does with her legs pulled up beneath her.

Thomas had been tolerating his 1cc of milk well, so they raised him to 1.5cc and will continue to increase the amount by .5cc every 12 hours unless something changes. He's been at 25 or 26% oxygen and has had mostly self-limiting braddies and desats. His diaper rash is still pretty bad, and he has an abrasion of sorts as well. They're running cultures on everything but also trying to address with creams/ointment and a layer of dressing for protection. He was stretching out his arms and legs a bit when I saw him this afternoon. I imagine that's pretty similar to what I was feeling inside of me just a few weeks ago.

Charlotte is still tolerating her feeds well, and I believe she's up to 6cc at this stage (if I'm remembering correctly). Her diaper rash is also still an issue that they are treating. None of the cultures are back (for any of the babies) related to MRSA, but Charlotte is still on antibiotics for the infected pustule she had on her arm. She too has had some episodes with braddies and desats, but she's typically bringing herself back out of them. She was sleeping peacefully when I visited her. The support for the CPAP was positioned on her hat in a way that made it look like she was wearing a bow. Cute. 

Overall, we're just waiting on a lot of "pending" tests from the lab... 

Late Post

I'm getting into the habit of writing these updates later and later each night. I'll need to change that or I'll never get healthy again.  

There's no update on the cultures they were doing to check for MRSA elsewhere. They had said it might take 48 hours. Charlotte is on both vancomycin and gentamicin, prophylactically. Thankfully, her blood culture has still been negative.

Charlotte is up to 5 cc of milk every 3 hours and is tolerating it well. Her most recent weight actually had her just slightly above her birth weight at 1lb 9.5oz :) Her oxygen settings on the CPAP are the lowest of all of them, vacillating between 21% (room air) and 22%. She occasionally has self-limiting desaturations but is "very stable" overall. Dermatology came to look at both her and Thomas due to some nasty diaper rash. They'll likely add an antibiotic cream to the desitin that they are currently using to try to treat/heal it. 

Thomas had his blood transfusion last night and is needing less oxygen from the CPAP since then, between 25 and 26%. He had had some greenish, bilious aspirates, but they assessed that it was probably due to the fact that he wasn't getting food to help push it all down. They started to feed him again (1 cc), and he's been okay since then. Maybe they will be able to increase his amount sometime tomorrow. His sisters are way ahead on the eating game at this stage. However, he's winning on size with a recent weigh in of 2lb 2.5oz! 

Audrey is up to 6.5 cc of milk every 3 hours, and they will continue to increase her amount by .5 cc every 9 hours. She's been between 24 and 28% oxygen on CPAP and has probably had the most braddies and desaturations of them all. However, most of them are self-limiting, and the nurses aren't concerned. Her large PDA is likely the culprit for much of it. Hopefully, all of their PDAs will close on their own in the not too distant future. Oh, and her weight on record was old, so I'll get a fresh one tomorrow. I would think all of her eating would be packing on the grams, but I suppose the equivalent of a few tablespoons (or less than 2oz) for the entire day isn't really that much.  

Charlotte, just taking up all the room in her isolette

Good and Bad

I was able to see the babies today for the first time in almost 2 weeks. They look so different already! Audrey and Charlotte are eating like champs, at 5.5 cc and 4 cc, respectively. Thomas isn't taking his food right now, so they had him back down to 1 cc. They are going to give him a blood transfusion and are thinking that will help, both with his oxygenation and his eating. Even still, he most recently weighed in at 2lbs 2oz! Audrey was 1lb 13oz and Charlotte was still bringing up the rear at 1lb 7oz.  

So that pustule that they had found on Charlotte's arm...turns out the culture came back positive for staph-- MRSA to be precise. They had started her on vancomycin when they originally found it, so treatment has been underway, but it's still not good that colonization of the bacteria occurred and caused this infection. Thankfully, the pustule is entirely gone and blood tests have all come back clear, so it doesn't appear that the infection has spread nor entered her bloodstream. We pray that neither of those ever occur. They're trying to determine now the exact strain of the bacteria so that they know if their treating it in the best way possible. They swabbed her elsewhere and also swabbed her siblings to see if they find the bacteria present. Additionally, they have all three of them on contact isolation, which basically means that the nurses always wear gloves, gowns and masks when dealing with them. This is in an effort to contain the bacteria. Once Charlotte reaches a certain size, they'll make efforts to decolonize her. The same will be true for her siblings if they test positive for colonization. Nothing is dire right now, but it's certainly one more serious consideration in the mix. 

Big Eaters

Audrey is up to 4.5 cc of milk (maybe 5 now, by the time I'm typing this) every three hours, and Charlotte isn't far behind at 3.5 cc. Thomas went back down to 1 cc as he hasn't been taking it well. I'm not sure the reasoning for that, but we should find out more tomorrow. I think I'm actually going to go in tomorrow for the first time in close to 2 weeks!!

Oxygen settings on the CPAP have been up a bit for Thomas (at 30% earlier today) because he's been having some apnoea issues, but they'll probably lower it back down soon since he's been doing better. Charlotte had a pustule on her arm, so the doctors did a culture to check it out. Results aren't back, but they started her on antibiotics just to be safe. Audrey is doing what she does best: blazing the trail for her brother and sister. 

More tomorrow...

Oh, and Will was able to hold hands with Thomas today!

Sweet Thomas grabbing hold of Daddy's finger

28 Weeks

Today would have been 28 weeks of pregnancy. I had thought I would probably start bedrest around now. As much as we sometimes like to think that we are in control, we're really not. And that's a good thing. 

I'm still recovering and not going into the NICU, but Will visited a couple of times today while I stayed in the waiting room. It was great to see them again with the help of technology. They all seem to be stable from a respiratory perspective (all on caffeine still), and they are all tolerating feeds, for the most part. Thomas is up to 3.5 cc, Audrey is at 2.5 cc, and Charlotte is at 2 cc of milk every three hours. 

The huge news of the day is that Audrey had another brain ultrasound and it came back 100% clear/normal! Praise the Lord. We are so grateful for this confirmation. Now, all three have received clear reports. 

Short and Sweet

Echo results are back. As expected, they all still have PDAs. 

Thomas and Audrey are up to 2.5 cc of milk every 3 hours, and Charlotte is up to 2 cc. All are tolerating their feeds well. All are on 21% oxygen (room air) bubble CPAP and doing well with that. Occasional apnea and braddies (As and Bs) are not a concern and just "part of the growing process," according to the nurse.