The Story of Our Twins
Finally…. After 104 days Ayla has come home!! Words can’t describe how happy we are to have them both home. I hope to have a full post up with more up to date pictures in the next few days, but right now I’m a little busy…. 
*** More pictures on the Flickr page!!!
Grayson has left the building!! He arrived home today at 4:15PM. His sister is still at the hospital and will be for several more days – but if all goes well she’ll be home before her due date of May 24th.
That’s it for now – I’ll post a full update as soon as Angie and I get caught up on some sleep!
This Wednesday the twins will be 12 weeks old, meaning that as of today they’ve been in the NICU for 82 days. Unfortunately we still have a few more weeks to add to that total, but at least we finally have an end in site.
Last week I shared that Grayson was coming off of his cannula (which he did) and he’s continued to do excellent breathing on his own. I also predicted (correctly I might add) that Ayla would be coming off of hers this week, and as of lunch time today, she too is breathing without any aid. They’re both continuing to gain weight and starting to really fill out. Grayson is the chunkier of the two, and weighed in this morning at 5lbs 11oz. Ayla is close behind in weight, at 5lbs 8oz, but because she’s longer than him, she doesn’t look as big as he does. They’re both continuing to do well on their feeds and this weekend they actually made the decision to move them to being bottle fed every other feeding. They haven’t fully adjusted yet to the extra work, but they’re picking it up pretty quickly.
So what’s left for them to come home? Well they need to continue to breath well on their own. Most importantly they need to be able to do so without having any major apnea or bradychardia episodes. They need to be able to regulate their own temperature (which they have been without issue), and finally they need to be able to take all of their feeds from either a breast or a bottle.
So as long as Grayson continues to breath the way he has, and Ayla is able to figure it out – the only thing they really have left to do is be weened off of the feeding tube. Realistically that’s probably going to take another week or two – but I will say it’s looking very promising to have them home around their actual due date of May 24th. Fingers Crossed!!
I’ve got big news for this update, so excuse me while I skip the pleasantries and get right to it.
As of this morning they have decided to take Grayson off of his Nasal Cannula. That means that our son is breathing completely without the aid of any machine. Now, before I get too excited and carried away – this is technically the first day, and it’s a trial to see how he does, but the fact that we’re even trying is a miracle. My major concern at this point is that he normally needs his oxygen turned up while he’s bottle feeding – without a cannula that obviously can’t happen. The only thing we can really do is wait and see how he does. Worst case scenario he’ll wear his cannula while feeding, and then take it off when he’s done – but any way you look at it, it’s a MAJOR step in the right direction.
Now, I may have started the post with Grayson’s major news, but it shouldn’t overshadow his other major steps forward; this weekend Grayson broke the 5lb barrier and as of this morning was officially 5lbs 1oz. He’s also continuing to do better on his bottle feeds and they’ve started giving him a bottle every 3rd feeding. During those feedings he’s almost always taking his full amount – which is a huge deal. Hopefully since he’s doing so well they’ll look at moving him to every other feed in the next couple of days.
I have a feeling if Ayla could read this she’d be mad I started this post praising her brother. In fact Ayla is winning some major battles herself – and she’s trying like crazy to catch up to big brother. She’s still a little behind him in weight, officially 4lbs 12oz this morning, but she more than makes up for it in attitude – my god that girl is going to be a handful. She’s also a slightly behind him with her breathing – although she’s making big steps forward. Based on her current rate, I’d guess that by this time next week she’ll be off her cannula as well. With her feedings, she’s doing every bit as well as her brother – and generally speaking is more enthusiastic with the bottle. She’s also being bottle fed every third feeding and will probably move to every other at the same time Grayson does.
It’s been a long road (we’re starting our 12th week on Wednesday), and to even imagine the kids at home seems surreal. Hopefully their progress will continue and we can actually bring them home at or around their actual due date of May 24th. Angie and I ask for your continued thoughts and prayers as we make the push over this last major hurdle. You’ve helped us get this far – and with your continued help we WILL get these babies home!!
And here we are, heading into the 10th week. Since I scored last weeks update an 8 out of 10, I’ll have to bump this weeks up to a 9. It wasn’t perfect, but it’s the closest we’ve been to perfect in a long time.
Both twins are making steady improvements. Ayla was able to get her temperature back under control and is now back in an open crib. I think the time back in the incubator gave her a break from trying to stay warm and she was able to put on some weight. It was slow at first, but as of this morning she’s 4lb 7oz, which is over 1/2 a pound heavier than she was last Monday. This weekend she also took a major step forward in her feeding, and is finally on condensed feeds. She’s currently getting 32ml over 2 hours, and then she’s off for 1. So far she’s tolerating it well and we hope to move to a shorter period in the next few days. She’s also been nippling really well, and this morning took an entire feed (32ml) entirely from the bottle. The last item for her is her breathing, which is also showing improvement. Early last week they dropped her flow from 2.0L to 1.75L and she’s generally on 21%-25% oxygen. The goal is obviously to get her off of it completely – but right now they’re using the extra flow to help her battle reflux.
Speaking of reflux, Grayson has battled back from the reflux issues he was having, thanks in large part to the Prevacid they prescribed him. After a couple of days of both it and the Carafate, he was feeding from a bottle again and on several occasions has taken his full feed (32ml) entirely from the bottle. His normal (tube) feedings have been going well also, and this morning they actually made the decision to condense it further. He’s now going to get 32ml over 30 minutes, and then be off for 2 1/2 hours. I believe that’s a low as they go (although it may be over 20 minutes), and the next step is to ween him to bottle feeding. His breathing has been slowly improving as well, they’ve lowered his flow to 600ml (about 1/3 of Ayla’s) and he’s normally on about 30% oxygen. His weight is also up, and as of this morning he weighed in at a whopping 4lb 10.7oz – a gain of 9.7oz over last week.
So needless to say we’ve had a pretty solid week. Now that they’re getting bigger we’re hoping to start nailing down some of those milestones we need for them to come home. We both know it’s several weeks away, but we’re definitely getting anxious and excited about the possibility of not having to “visit” our children anymore.
*** More pictures on my Flickr page (Link is to the left)
Well today brings the start of another exciting week in the NICU, and another week closer to the babies coming home. I was hoping to have nothing but awesome news for this post, a perfect 10, but with a couple of minor setbacks late in the week I’ll give it a solid 8.
My most exciting news actually got spoiled a little by the nurse in our morning call. You see Ayla and Grayson had actually been sharing the same crib since Wednesday and it was AWESOME. To see both of our babies side by side was something Angie and I have been waiting a long time for. Unfortunately the nurse last night wasn’t able to keep Ayla warm enough with just blankets so she went back to an incubator and Grayson went back to a single crib. She had been doing fine in the crib, but we had noticed her weight gain had slowed. Since they actually burn calories trying to stay warm it’s better in the long run to keep her in the incubator until she gets a little more fat on her body. With a little more fat she’ll be more insulated and won’t have to work so hard to keep her temperature up.
Grayson also had a minor setback of his own. He had been doing great with “nippling” (bottle feeding) and on several occasions took his entire feed from the bottle. Unfortunately his reflux issues returned full force and he developed a case of esophagitis. All the increased acid in his esophagus made it raw and he had zero interest in trying to swallow anything. He was actually even pulling his head away from the bottle, he wanted no part of it. Normally they don’t like to use medication to treat reflux in the little ones, but we spoke to the practitioner and decided that a small dose of prevacid – along with some carafate before feedings – would help with the reflux and allow him to continue to bottle feed. He’s finally getting the hang of it and we certainly don’t want him to start associating the pain of reflux with feeding from a bottle.
So other than those relatively minor setbacks the twins are doing great. They’re both consistently putting on weight – Grayson broke the 4 lb barrier on Saturday and this morning weighed 4lbs 1oz. Ayla is not far behind at 3lbs 13.7oz, and now that she’s not burning calories to stay warm she may make a jump in the next few days. With the exception of the reflux issues, both are doing well on their feeds, and both are starting to figure out the whole nippling thing. It’s been really exciting to watch them grow, and it’s amazing to think how far they’ve come in the past 8 weeks.
*** As always, there are more pictures on my Flickr page
Hooray for another week down! It’s hard to believe that our little ones will be 8 weeks old on Wednesday. So much has happened in the last 54 days – we’ve truly been on the ride of a lifetime. It seems like we’ve experienced the highest highs and the lowest lows, taken unexpected turns and dangerous drops, and yet here we are – still riding this roller-coaster we call the NICU. The good news for both us and the twins is that things are starting to level out and really get fun for everyone.
As for the individual updates, we’ll start with Ms. Ayla. In the last post I talked a little about her being sick and some of the issues she was facing. Fortunately she’s gotten over almost all of it and is really showing marked improvement. She finished her last dose of antibiotics on Saturday and all indications are that her intestinal issues are gone. She was able to start back on a small volume of milk on Saturday as well and they’re going to slowly work her up to full feeds over the next several days. The biggest news for Angie and I is that she has finally come off of the CPAP machine and is now on a nasal cannula. With the CPAP gone, the swelling in her eyes has disappeared, along with the little “hat” they use to attach the CPAP. So now we can finally see our little girl’s beautiful face!
The surprising news for Ayla (at least for Angie and I) is that even off of Angie’s milk she’s continued to grow like a weed. We had expected that with her being sick and only getting nutrition from her IV fluids that her growth would be slowed – in fact the opposite was true. As of this morning she weighed a hefty 3lbs 13oz and seems to be trying her best to get to that 4lb mark. Visibly she’s definitely bigger, even several of the nurses who haven’t had her for a couple of weeks have commented on how big she’s gotten.
Mr. Grayson is doing great as well. He’s our little warrior and battles everyday to make a small improvement. Whether it’s a slightly increased amount of milk, or a slightly decreased volume of air – he’s battling his way towards being a “big boy” and trying desperately to free himself from the confines of the incubator. In reality he’s almost there, just a few more ounces of weight gain and he’ll be out in the open. I’m not sure what Angie and I will do when we don’t have to look at our little boy through clear plastic walls – but we sure can’t wait!
As for his weight, he’s still smaller than his sister. He tried hard for the first couple of days of her being sick to take over as the “heavy weight”, but she quickly caught up and passed him. He’s not far behind however, and as of this morning was 3lbs 11oz. Technically that’s actually more than enough for him to be in a crib, but since keeping warm burns calories, and he needs all the calories he can get – they’ve opted for him to get a little bigger before they make the switch.
Well, that’s about it for this week. Hopefully the twins will continue to grow at their current pace and we’ll have even better news for the next post. As always thanks for the comments, emails, and continued prayers – you’ll never know how much they mean to Angie and I.
