The Fab Five

Perspective

9 Comments 02 February 2009

Today, we got a special treat. As the pictures show, we got to hold two babies at the same time! This is the first time we’ve gotten to do this – very cool!! Casey held Ryan and Lila while I held Brooklyn and Britton. After we were done with those four, Casey and I took turns holding Jack. The babies’ beds are situated with Brooklyn, Britton, and Jack on one side of the room and Ryan and Lila on the other side. Because of this, Ryan and Lila will always be held together when two are held at the same time. Britton will either be paired with Jack or Brooklyn, but Brooklyn and Jack can’t be held together. We generally hold each baby for an hour each day, but oftentimes we only get to four before we run out of steam or time or both. Now that we can hold two at a time, we’ll be getting all five held every day and we’ll probably get a little more than an hour each time. As you might imagine, we are very excited about this new development!!
And now, onto “Perspective”…
We’ve gotten a lot of comments to this effect and even we’ve noticed it ourselves – the babies look like “normal” babies in most of the pictures. In a lot of ways, that is accurate, but I thought I’d try to provide some perspective that the pictures don’t quite communicate…I guess these pictures need more than 1000 words!

– The babies’ toes are the size of a grain of rice.
– Take a match and break it into thirds. One of the pieces is the size of their fingers.
– Britton’s whole hand wraps only half way around the tip of my pinky.
– Their arms from the elbow to the tip of their pinky is the same length as my pinky.
– Their heads are about the size of a baseball.
– You could probably fit at least three, if not four legs (around their calves), into my wedding ring.
– Jack weighs about 15 ounces more than Britton. Not much until you consider that this is 33% of his body weight.
– Jack and Brooklyn (the two biggest eaters) are fed 24 mL of breast milk every 3 hours…that’s about 5 teaspoons.
– Their total caloric intake over 24 hours is 90 for Lila and Britton and 120 for Jack, Brooklyn, and Ryan…that’s one beer, a single serving of pudding, or 1/4 cup of ice cream (Blue Bell Cookies ‘n Cream to be exact!).
– Their hearts are about the size of a grape.
– Our friends’ baby girl who was born a week before the quints weighed 8 pounds at 41 weeks…that’s roughly 4 times the weight of Lila and Britton on their birthday.

– One more – the babies sneeze a lot when they are out of their isolettes, maybe 10-20 times an hour. Funny thing about their little sneezes, while it is a full-bodied sneeze, it wouldn’t blow a feather off a flagpole…funny stuff!!
I have new weights as of Saturday, the 31st. Here they are:

– Brooklyn Faith: 2 pounds, 13 ounces
– Britton Grace: 2 pounds, 2.1 ounces
– Jack William: 3 pounds, 1.7 ounces
– Lila Addison: 2 pounds, 11.3 ounces
– Ryan Elizabeth: 3 pounds, 1.3 ounces

And let’s wrap it up with some GREAT news. All five babies have gotten their PICC lines removed which means that they no longer have an IV!! The PICC line is a really long IV that goes in their wrist and feeds all the way up to a blood vessel right near their heart. They were able to remove this because they are getting as much nutrition as they need from their milk feedings. Removing the line greatly reduces the risk of infection and hopefully means they will not need another IV!!! Life is going exceedingly well for all five!!

God Bless,
Ethan
http://www.joneslife.net/

The Fab Five

GREAT NEWS – These Girls are Fighters!!!

4 Comments 30 January 2009

Great news on Lila and Ryan – both of their heart problems appear to be gone!! Lila’s PDA is completely gone as is the other small hole that she had. Ryan’s PDA is still there, but very, very small!! YEAH!!!! The cardiologist actually came into the NICU while Casey was holding Lila to confirm that they had done the echo cardiogram on the right baby because he didn’t believe the results!! From this point, they will not be doing any more tests or medication unless they pick up another murmur when they listen to their hearts as part of their normal checks on the babies. Thank you all so much for your prayers, stories of success from similar situations, and all around encouragement!!!!!

God Bless,
Ethan
www.JonesLife.net

The Fab Five

Lila’s Little Heart…Please Pray for Her!!

17 Comments 26 January 2009

It turns out that Lila was not responding to the meds they gave her to close one of the holes in her heart (the PDA) after all. Though they couldn’t hear the murmur any longer, the echo cardiogram they performed on her today not only confirmed the hole is still there, but also that it is a very large hole (the fact that it is very large is probably why they couldn’t hear it any longer). At this point, they are stepping up the meds to make a last ditch effort to get her to respond, but the doctors are not real optimistic that it will do the trick. If it does not close on its own and does not close because of the meds, the only options will be to wait it out or to operate.

She is not showing any ill effects from the hole at the moment, but there is still plenty of concern that she will begin to have issues. The question for us will be do we go ahead and operate while she is doing well so that she can handle the operation better or do we wait until she starts to have issues before we operate. Clearly, this is not a decision Casey and I would like to be faced with!

We were contacted through the blog by a mother of triplets whose child had to go through this operation. She said that it went great and her daughter did much better once everything was over. Thank you, Shelley, for your words of encouragement! I don’t believe that this is an all too uncommon thing for premies to go through, but it is a scary one nonetheless. We should know something in the next couple of days. In the meantime, please pray for Lila’s little heart!

God Bless,
Ethan
www.JonesLife.net

The Fab Five

No Bald Babies

2 Comments 25 January 2009

We’ve been trying to figure this out since they are born – do these babies have hair and if so, what color is it? We knew that several of them had some hair up there, but weren’t certain which ones or what color because we haven’t seen them without their beanies on since just after they were born. Well, finally today the mystery has been solved. Brooklyn, Britton, and Ryan are brunettes while Jack and Lila are blondes! Who knows what color they’ll end up with, but it’s fun to know for now what the mix is for the moment!

The Fab Five

“Various Stages of Excellent”

3 Comments 23 January 2009

Whew!! What a wild day this turned out to be! It started with the kickoff to the diaper drive at HEB, rolled through three TV interviews, nearly six hours in the NICU, a few momentous occasions, and is finally coming to a close with this blog post. Casey and I are pretty exhausted (and so is Eliot!) and we’re hoping we can catch up on a lot of busy work and rest this weekend…that’s the plan, anyway. We haven’t had much success sticking to the daily plan lately so I guess we’ll just have to wait and see what tomorrow brings!

So here are the highlights:

– As you see below, HEB kicked off a week long diaper drive for us at the four points store (click the HEB logo for details)…very exciting! The folks at HEB were incredible!!

– I got to hold one of the babies for the first time this morning!! I held Britton for about an hour while Casey held Brooklyn for the first time. It was also the first time that we got to see all of the babies without their beanies and eye shades…their little faces are so perfect! It seemed like the world stood still for a while as we held each baby, slowly rocking them and telling them about the new world they are now a part of…so peaceful!

– The KVUE interview was really neat because we got to hold a couple of the babies (Brooklyn and Britton) up for the cameras and introduce them to Austin! That was the first time that I had really “handled” any of them and believe me, I was nervous! I know just about all men have an irrational fear of holding babies because they are so fragile and we feel like we’re going to break them, but with these little guys, that’s a real concern! They are so frail in your hands it feels like if you sneezed you’d probably break a few ribs!

– When we were taking a break from our first time in the NICU, KEYE called and asked to come up for another interview. We met up with them 30 minutes later, talked with them for about 20 minutes, then ran upstairs for a second round with the babies.

– In the afternoon, I got to hold Lila while Casey held Ryan, again for about an hour. Lila was the second smallest so I held the two pip squeaks of the bunch today.

All in all, the babies continue to do very well, however we still need prayers for Lila’s heart problem. They performed an echo cardiogram on her today to determine what exactly was the cause of her heart murmur. The news wasn’t unexpected, but it wasn’t welcome, either. She has two holes in her heart, one big and one small.

The big one is called a patent ductus arteriosus (PDA) and is relatively common in premies. There is a vessel that is supposed to be open during pregnancy to allow more blood flow to get to the lungs which is supposed to close upon birth. In premies it oftentimes does not close. They started her on medication tonight to get the vessel to close up. If that doesn’t work, she will likely end up being operated on, though the doctors do not expect we will get to that point.

The small hole is between two of the hearts chambers and it is called a ventricular suptal defect (VSD). I think these are also somewhat common in premies, but I’m not certain. This hole can not be treated with medication, but is not a big enough problem yet to require surgery. It will hopefully close on its own or never cause any complications that we should be concerned with, but no one can say for sure what it will do. The doctors will monitor the VSD closely, possibly beyond her stay in the NICU. Both of the holes in her heart, if they become problematic, will cause difficulty breathing and eating and will stunt her growth.

Despite this news about Lila, one of the doctors described the babies’ conditions as being in “various stages of excellent” and we couldn’t agree more!! Thank you to everyone for continuing to lift our babies up in your prayers and please continue to do so!

Pictures of all of the day’s events will be uploaded to the website soon!

God Bless,
Ethan

The Fab Five

Baby and Casey Update

5 Comments 22 January 2009

I’m going to try to make this relatively quick because it’s late and I’ve had a crazy busy day, but I wanted everyone to have an update on things. In general, the babies continue to do very well with everything though they all still have their little issues. Lila’s leg sore is looking much better as are the Ryan and Jack’s belly buttons. Brooklyn, Jack, and Ryan are no longer on the Billy light (the light that helps them get rid of their jaundice).

We got a bit of GREAT news today when the doctors sonogrammed the babies’ brains. They do this to determine if there were any “brain bleeds”. These brain bleeds are known to cause cerebral palsy and are common in premature babies. Click here (http://en.wikipedia.org/wiki/Cerebral_palsy) for more information on Cerebral Palsy. Evidence of a few brain bleeds in each of the babies would not have been surprising, though would not guarantee that they would have CP. The bleeds usually occur in the first 4 or 5 days of life and after that, the risk is greatly reduced. Well, the GREAT news is that none of the babies had any brain bleeds!!

There is one issue that I would like to ask for everyone to add to their prayer list. They have picked up a faint heart murmur on little Lila which means that one of her valves is leaking. Again, this is something that is common in premies, but can develop into something very serious, including heart surgery. Click here (http://en.wikipedia.org/wiki/Heart_murmur) for more info on heart murmurs. Please pray for Lila’s heart to heal up on its own, without intervention from the doctors!!

Casey is still dealing with high blood pressure, swollen calves, and a lot of soreness from her incision though she continues to make good improvements every day. She spent most of the day at the hospital and got to hold Jack again. She got to hold Lila last night for the first time while Eliot was there – pictures coming soon – and tomorrow she should get to hold Brooklyn. Ryan and Britton should get their turn by the end of the weekend!!

I know I’ve said this a lot, but I’m going to keep on saying it – we can’t believe how blessed we have been through this process. Yes, having five babies all at once is incredibly stressful and at times overwhelming. However, there are so many things that could have happened along the way to make this journey exponentially more difficult. We are continually in awe of God’s work in our lives through these five little miracles!

More info and pics to come sometime this weekend!

God Bless,
Ethan

© 2013 JonesLife. Powered by Wordpress.

Daily Edition Theme by WooThemes - Premium Wordpress Themes