Tag archive for "nicu"

The Fab Five

Perspective…Quick Note

2 Comments 03 February 2009

Several have asked why Jack and Brooklyn can’t be held together so I thought I’d clarify. The only reason is that Britton’s bed is between theirs and the cords that they remain tethered to will not reach far enough for them to be held together. The unfortunate thing about holding a baby in the NICU is that they are hooked up to a feeding tube, a heart monitor, a temperature monitor, a C-Pap or other breathing device, or any number of other little cords and tubes at any given time. Because of this they can’t venture too far from their little incubators.

God Bless,

The Fab Five


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,

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,

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!

Good Times

A Great Day for The Jones 8!

4 Comments 25 January 2009

The Jones family – all eight of us (nine if you count the newest resident at our home, Casey’s mom) – had a great day today! Casey is doing better, the babies are continuing to bore the nurses (not really, but they don’t have many issues they have to deal with – that’s a really good thing!), Eliot had all kinds of new adventures, Grandma got to visit with friends and spent more time with the babies, I got to hold three of the five, and we all got to see several of our Marriage Builders friends who came up to see the babies…good times for all!!

Casey had it really rough all day yesterday. She spent a lot of time in the NICU holding babies, but for some reason, she was really nauseous and worn down all day long and into the night. Our guess is that she’s probably pushing herself a bit too hard, but poor girl is being torn in two different directions! She has doctor’s orders to stay completely off her feet for all but one or two hours a day from Dr. Reich, but she also has doctor’s orders from the neonatologists to be in the NICU as much as possible. I bet you can guess which order she is complying with…

Today, she woke up feeling much better and didn’t have any of the same issues as she did on Saturday. She held Britton for about an hour and held Lila for nearly two hours. Right now, she’s getting some good Eliot time, cuddling on the couch while Eliot “paints” whiskers on her mama’s face… :)

Eliot got to spend lots of time in the NICU, then got a surprise trip to Chuck-E-Cheese…yeah another trip for Eliot to C-E-C’s without daddy!! One of our good friends, Ryan Jones (or Uncle Jonesy to Eliot) came up to see the babies and took Eliot off our hands for awhile. She had a blast, of course, then came back to the NICU and helped Nurse Stacy give Brooklyn a sponge bath. That was really cool to watch – she was totally into it! Hopefully that is a sign of things to come when the babies come home!

For my part, I got to spend most of the day in the NICU to make up for not being able to come at all yesterday. I spent Saturday playing catch up from the last 2+ weeks away from home and work. Today, I held Ryan, Brooklyn, and finally my boy, Jack! That’s Jack in the picture above.
The babies are all doing very, very well! Seriously, the nurses have very little to report to us anymore when we come up. The only issues worth noting are Ryan and Lila’s heart problems, but we also have good news on that. Whoops – I just realized I haven’t posted info on Ryan’s heart problem as it just showed up yesterday. She has one of the same issues that Lila has – a hole in her heart that is allowing too much blood to get to her lungs. Both girls have responded well to the medication they’ve been on and the large holes they both have (the PDA’s) appear to be closing up. There is still a decent possibility that the holes will open back up however, so it appears that this problem will be on our minds for a while. Lila’s little hole is not something that is helped by the medication so they will continue to monitor that as well.

We couldn’t be more excited with how well the babies are doing…these little squirts are proving to be a plucky bunch! It appears that Britton has won the Diva award for now as she continues to make her demands known to all within earshot of a squeaky little 2 pounder. Ryan has quieted down over the last couple of days so she is out of the completition for now. Brooklyn and Jack are still competing for the most chill while Lila is just hanging out and taking it all in. They are all taking feedings pretty well and their little infections have all cleared up. As the doctor said yesterday, they are all at various stages of EXCELLENT!!!!

God Bless,

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,

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