Tag archive for "update"

Giving Thanks

HEB Diaper Drive – Phone Orders

2 Comments 27 January 2009

First, a quick update. We’ll know something on Lila’s heart at some point tomorrow. They did another echo cardiogram on Ryan today and it appears that the hole in her heart (she also has a PDA) is smaller than it was originally which means she is definitely responding to the medication. She is being put on the same round of treatments that they now have Lila on and we will know more about her condition in a couple of days. Please continue to pray for Lila and add Ryan’s heart to your prayers as well!!

A good friend of mine who actually took the call from HEB about the diaper drive asked if he could “guest blog” for me to update some of the details. Since he has been coordinating everything with them, I figured that was a good idea…

My name is Dean and my wife and I are close friends of Ethan and Casey. We’ve been so blessed to see the outpouring of support from not only our church and Austin, but from around the country! For those of you not from Texas, HEB is the largest grocery chain in Texas with over 300 stores. They are THE grocery store in Austin. HEB has been so incredibly generous with how they have rallied around the Jones family with this community diaper drive, and now they want to open it up to those who can not physically get to this specific Austin HEB location. This HEB location will take phone donations at 512-336-7700. Just tell them you want to make a donation to the Jones Quintuplets diaper drive and they will take it from there and match your donation! The diaper drive goes through this coming Friday, January 30th.

On behalf of Ethan and Casey and their entire support group we want to thank, individually, the wonderful folks at HEB who have stepped up to make this diaper drive happen over the last week. Leslie, Jill, Tamra, Leticia, Xavier, Chad, Cynthia, and Jeff. Jeff actually came in at 3:30 a.m. on his day off to finish up the wonderful in-store displays. Also, a very special thank you to Mr. Charles Butt, the CEO of HEB. Mr. Butt personally got involved when he saw the story on the Quintuplets and said “We HAVE to help this family”. HEB did not have to do this diaper drive, and they have asked for no PR or recognition in the process. They did it because they are a caring organization that is made up of absolutely wonderful individuals. You can see why they retain their employees so well and maintain such a fantastic work environment.

For those of you that have already taken the time to donate to the drive, a huge THANK YOU. We’ll update everyone after the drive wrap up Friday! And again, thank you to HEB for allowing those not in Austin to be part of this phenominal event! Dean

God Bless,
Ethan
www.JonesLife.net

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

The Fab Five

First Contact – Jack William

4 Comments 21 January 2009

Casey got to hold one of the babies for the first time last night and guess who the lucky baby was? My main man, Jack William…what an experience! They took him out of his isolette and placed him on Casey’s chest, skin-to-skin, for about 30 minutes of good cuddle time. He just settled right in and stayed perfectly content for the entire time. As you can imagine, Casey had a hard time giving him back!!

The nurses call this kind of contact “kangaroo care” and once all of the babies are healthy enough, they will all get the same treatment. Jack is the healthiest so far with Lila and Brooklyn in competition for the next spot. The goal is to hold each baby for 30 minutes to an hour every day as it has been proven to be beneficial to both baby and mama’s health. I know, shocking news, right? Thank God they did a study to tell us that it is healthy for a mom to hold her baby!!
There will be a few more pictures uploaded to the media tab of the website later today.
God Bless,
Ethan

The Fab Five

Update on the Babies…and oh yeah, Casey, too!!

5 Comments 19 January 2009

Babies, babies, babies!!! Did I mention we have lots of babies?? Wow! That’s all I can say to sum up the last couple of days…WOW!!!

Alright, so here are some updates on the Fab Five:

– Brooklyn has been the most relaxed of the five…she’s just totally chill everytime we go up. She was moved to an isolette (incubator) to help her maintain her fluids and heat. Eventually, all of the babies will make this move and will stay in their isolette for several weeks.

– Britton is going to be our little beach bum – you can tell she has really enjoyed freedom from the womb! Several times when I’ve been up to the NICU, she’s been completely stretched out like she’s laying out at the beach…too funny! She has a little issue that popped up today that they are watching pretty closely. She has a raw spot on the inside of her right leg that was probably caused by some urine getting between her legs. With her skin being so sensitive, it caused a really nasty looking sore to develop. They are trying to keep her legs open so it can heal up and not get infected. She has also been in competition for the loudest and has already been awarded the most high maintenance award. The instant she has a wet diaper, this girl is letting the nurses know!!
– Jack is also a little chill bug. Everytime I’m up there, he is perfectly content and chilled out! He doesn’t fuss, he doesn’t squirm, he just lays back and takes it all in. He is probably doing the best of all of the babies which is surprising because usually the premie boys don’t do as well as the girls. He is the only one so far to take a feeding and actually digest the milk. That’s my Jack!! Did I mention how big his hands are…HUGE!! ;-)

– Lila Addison is also pretty relaxed. She doesn’t make much of a fuss and doesn’t seem to be bothered by much. Her jaundice has been worse than the other babies so they have had her under special blue lights to keep it under control.

– Ryan is in competition with Britton for the loudest one of all. She is the only baby who was making noise in the operating room and she hasn’t stopped yet! They are keeping a close watch on her belly button as it appears to be developing an infection. The doctors have put her on IV antibiotics and are keeping the area moist with some triple antibiotic cream. They are not too concerned at this point, but are really monitoring her closely.

In general, all of the babies are doing really well for their age and weights. They all have little issues that they are watching, but the doctors are very happy with how they are handling everything. Everytime we go up to the NICU, the nurses give us a full report on each baby – they really throw a lot at you! By the time this is all over with, Casey and I are going to be able to take over…yeah, right! The babies are expected to remain in the NICU until we near their original due date, March 27th. It’s a long time, but they are in really good hands so we are not complaining. There is no question that these babies would not survive if it weren’t for all of the amazing care they are receiving!

For her part, Casey is still dealing with a lot of pain and discomfort. Her belly is extremely sore, her legs are still swollen, and it is still really difficult for her to do just about anything. It is a team effort to get her up out of bed and then back in again. It is frustrating for her because she isn’t able to stay on her feet for long which means she can not go up to see the babies very often. We made it up twice today for a total of about an hour and a half. Ladies, can you imagine only being able to see your newborn for an hour and a half every day? And not being able to hold them?? Not cool…

The good news, however, is that Casey will get to hold a couple of the babies starting tomorrow. They will do skin-to-skin holding with the two healthiest babies for about 30 minutes each. Studies have shown that this contact helps the babies grow better and helps Casey’s milk to come in better. It also allows Casey to come into contact with the germs that the babies are exposed to which will cause her body to build up antibodies to fight these germs. Casey will then pass these antibodies to the babies through her milk…AMAZING! Unfortunately, since there is no medical benefit to the babies, I won’t get to hold them for a few more days.

All in all, life is very good being a father of six! The days have been hectic and stressful, but it feels really good to know we’ve got five healthy babies working overtime to enhance the quality of our lives for years to come. It’s only been 3+ days and these five have us hooked!

Please continue to pray for Casey’s quick recovery, the babies’ health, and the well-being of the NICU doctors and nurses!

God Bless,
Ethan

Giving Thanks

In Good Hands… :-)

10 Comments 17 January 2009

There is quite a bit going on with the babies and their care right now so I thought this picture would be helpful to most of you (and us!) who are unfamiliar with NICU care. THIS IS NOT ONE OF OUR BABIES, however, it is a really good illustration of the care our five are receiving. This baby is a little smaller than ours are, being born at 26 weeks, but they look very similar. As far as I can tell, all of the tubes and monitors attached to this baby are the same as what are attached to ours.
I want to make something very clear: the babies are not hurting, are not uncomfortable, and are not in distress. In my four years as a daddy raising Eliot and being around her little friends, there is something I have noticed about little ones – they are very good at letting you know they are unhappy. This is the case for a newborn all the way up to at least 4-1/2 years old (Eliot’s age). If they’re hungry, they cry. If they’re cold, they cry. If their diaper needs changed, guess what? They cry. If they are uncomfortable in any way, they either cry, scream, whine, or all of the above. Babies and toddlers let the world know their joy as well as their pain which is the most endearing and sometimes frustrating qualities of a child. Our babies are no different. They are spending most of their time sleeping, fussing a little, then sleeping some more.

What a joy it has been, through our weary eyes and open hearts, to witness the first 24 hours of five precious lives! The miracle of life is alive and well here at Seton Medical Center as it is in delivery rooms, nurseries, and NICU’s across the globe. The nursing staff and doctors that we have encountered both pre- and post- delivery have been phenomenal, a true credit to their industry! Through dutiful application of God’s gift of scientific knowledge, the Seton team has put their talents and God’s blessing on miraculous display!

God Bless,
Ethan
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