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The Fab Five

New Slide Show on JonesLife.net

Comments Off on New Slide Show on JonesLife.net 16 February 2009

Check out the new slide show that Tracey Taylor, owner of Taylor Made Portrait Studio, did for us after a visit to the NICU. The link is on the front page of the website directly beneath the small slideshow that is posted there. We were actually a little reluctant to have Tracey come up to photograph the babies as we didn’t think she would get much given the environment of the NICU. Boy, were we ever wrong!! She did an amazing job of capturing the essence of our experience with our babies, a talent Tracey has shown all along as she has chronicled this adventure!

Also, we were interviewed today by KVUE who wanted to update Austin on the baby’s one month birthday. They ran the report on the six o’clock news. We’ll have the link up on the website in the next couple of days.

God Bless,
Ethan
www.JonesLife.net

The Fab Five

The Busy Life in the NICU…Busy…Good…Busy!!

5 Comments 11 February 2009

The blog title says it all, but the pictures say more…the last two days have been BUSY GOOD in our home away from home! On Tuesday, Ryan got a bath which happens about every three days for each of the babies, but often does not happen while we are there. So far, we have only been there to help bathe Jack and Britton. No sponge baths this time around – real baby baths – in a tub, with real water, soap, and all the other amenities of baby bath time. I haven’t gotten the chance to pitch in just yet – we have to be fairly economical with our NICU time so I am generally holding the other babies while Casey and the nurses tend to the bath. Thanks to the nurses for lending their photography skills!

While Casey had her hands full with Ryan’s bath, I had my first opportunity to feed one of the babies a bottle and Jack was the lucky recipient of my baby bottle skills! I can’t explain what it is about feeding a baby a bottle, but it gets me every time. That’s the way it was with Eliot and I knew immediately that it would be the same with these babies the moment I got hold of Jack and got him going on the bottle. There’s something amazing about watching them work through the bottle, taking their little breaks to think about what’s happening and to catch their breath. I think it’s just one of those moments where you realize how fragile their little lives are and how much they depend on you for every ounce of their survival. Truly incredible!!

Today was another busy day and we’ve got more pictures to prove it! While I held Ryan and Lila, Casey held Jack and Britton and Big Sister Eliot got her first go round on the baby holding carousel. As a proud mom and dad looked on, Nurse Melissa and Nurse Jeannie helped one suddenly serious 4 year old hold her biggest little sister. The look on her face was well worth the price of admission, but unfortunately this time I don’t think the picture quite captures the moment just as it was. The conflict of emotion was written all over Eliot’s face as she oh so carefully held our biggest three pounder – excitement, wonder, and curiosity were on the verge of bursting forth as she struggled to maintain her very solemn little face. This was serious business and she wasn’t about to let her excitement overtake the moment. It was absolutely priceless!

Busy. Good. Busy good. That’s life in the NICU these days. It seems every day we show up now there is something new that we get to do which makes the time fly by. Life in the NICU is at times frustrating and at times, the time we spend there seems to never be coming to an end. But days like today and yesterday remind us that this special time in our lives will be over sooner than we’d like. Days we will always cherish as we watch our babies grow, days we will never be able to relive. Like I said, NICU life is a busy life…NICU life is a good life…
Oh yeah, how could I forget?! That other picture is of super mom Casey holding three at a time – Brooklyn, Britton, and Jack! At one other time, she was “kangaroo’ing” Britton and feeding Jack a bottle all at once. Way to go Super-Mom-Elasti-Girl Casey!!!
God Bless,
Ethan

The Fab Five

Our New Normal

2 Comments 07 February 2009

Sorry for my silence the last few days. I’ve been playing a lot of catch up with work, bills, school, getting to know my wife and daughter again, and simply getting back into life…a new life, but life nonetheless. We’ve found a mini-rhythm to our days which will probably change in the next few days, but we’re enjoying the beat we’re marching to at the moment. We have had Grandma Stevie (Casey’s mom) and Nana (my mom) in town since Casey got home from the hospital which has been a huge help – laundry, dishes, dropping off and picking up Eliot from school, grocery store runs, cooking meals – these are all activities we have not had to worry about, thank God!! The help leaves on Sunday so, like I said, the rhythm will change…soon!

During this time, Casey and I have spent as much time at the NICU as possible getting to know our babies as best we can. We live in a different world when we pass through the NICU doors – the babies in their protective environment of the isolettes, tethered to the multitude of chords and wires under the watchful electronic eyes of the monitors, the gentle hum of the nasal canules that help them breathe, the frequent sounding of alarms, and the ever present care of the nurses and doctors surround us. As yesterday’s heart rate drop on Britton quickly reminded us – we are very grateful for this environment and acutely aware of how necessary it is to our babies’ survival. The nurses and doctors are absolute pros at what they do and they do it with a unique sensitivity to our needs and concerns that can only come from bringing your heart to the job. They are truly a credit to the nursing profession!

It is frustrating for us on some levels that the first 60+ days of the Quints’ lives and of our relationships with them will be spent in this environment, however. Despite the necessity of their stay, the quality of their care, and the amount of love they receive from this special group of professionals, it is hard for us to connect with the babies here. The separation is very real when they are in their isolettes. Though we can reach in and touch, it is very difficult to talk to them or interact in any way while they are in there. When we hold them, they sleep, and we generally have to hold them up so high on our chest that it is difficult to even see them. We must be mindful at all times not to overstimulate them in any way which, among other things, means no looking them directly in the eye, very little movement when they are held, and keeping their heads held in a very specific position.

Though we spend 4-5 hours with them every day, we are not truly responsible for their care at the moment and this is a strange feeling to us. They are not fed at mama’s breast, but rather with milk which is pushed through a tube by a pump. They are lulled to sleep by the hum of the machines they are connected to, not by the sound of our voices singing them lullabies. And their cries are placated not by the gentle warmth of Daddy’s chest as he rocks them slowly, but generally by something only one of the nurses can fix. All of this is necessary to the babies’ well-being, and as the multitude of moms and dads who have been through this same experience will tell you, it is also heart-wrenching to the parents.

There is one other thing that is different about our interaction with these babies – being as premature as they are, they are not expressionate and interactive with you. Mostly they sleep with their mouths slightly open and very little expression on their faces. I didn’t even realize this was different until Brooklyn stole my heart yesterday with all of the faces she was making at me as I was holding her. For about 10 minutes, Brooklyn was wide awake and ready to please! She was smiling, working her little tongue around her mouth, her eyes were darting back and forth in response to different sounds around her, and generally acting like new born babies act. It was really cool and it reminded me of how fun it was to get to know Eliot in the first few days of her life!!

We know that all of these activities I am now lamenting the absence of will come to us in due time…and when they come, they’ll come like a tidal wave!! They are making great progress every day and, honestly, they’ll probably be home sooner than we are ready. Brooklyn seems to be the leader of the pack – she is completely off of breathing tubes as of yesterday, she is the first to show us some personality with her facial expressions, and she is the first one to take a full bottle feeding (Lila took a small bottle feeding before her). Brooklyn was also the biggest at birth and continues to be the biggest girl. Jack continues to eat and grow and sleep and not much else. Britton is still our little diva, making everyone aware of her displeasure at a moment’s notice, though Ryan has emerged as a close competitor for Britton’s diva title! Lila has settled into Jack’s way of thinking and spends her days on the chill side of life.

So this is our new normal, at least for now. The beat changes pace and rhythm often, and when it changes, we change along with it. Though it seems like an eternity from now, the babies will be home soon and chaos will be the new rhythm to life. Until then we’ll keep praying, waiting, and hoping for our babies to come home soon, come home healthy, and to come home ready for their new lives to begin…

God Bless,
Ethan

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,
Ethan
www.JonesLife.net

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

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