The Fab Five

No Wimpy White Boys!!

3 Comments 17 February 2009

As we’ve come to find out, white males typically do not perform very well in the NICU. They don’t eat well, they don’t grow very well and are generally outperformed by their female counterparts. White males have apparently done so poorly in their NICU stays that they have earned themselves a nickname – Wimpy White Boys. Well, I am proud to say that my boy, Jack William, is an exception to the rule! Not only is he doing well, he is outperforming all four of the girls. He is the first four pounder, weighing in at 4 pounds, 2.5 ounces, he is the first one to be moved out of an isolette and into a regular crib, and if he keeps it up, he is likely to be the first one we get to bring home! Go Jack!!

Though she is nowhere near as well off as Jack, Brooklyn is doing the best of all the girls. Ok, I may have exaggerated just a bit with that statement. Truth be told, Brooklyn is a close second to Jack’s supremacy. She was moved out of her isolette today and will stay in a crib if she can do well with the change. She weighs in now at 3 pounds, 12.6 ounces.

Britton continues to be the baby of the bunch weighing in at only 2 pounds 12.3 ounces. The doctors are a little concerned that she hasn’t been gaining much weight so they are increasing her calories and monitoring her red blood cell and platelet count. It probably doesn’t help her weight gain that she is still the diva of the bunch. She spends much more time than the rest letting the nurses know about every little discomfort she experiences, of which there are many! I do not believe it will be necessary, but if she does not start picking up the pace, they are considering doing a blood transfusion to get her red blood cell count to pick up. Other than that, she is doing very well in all categories. Please pray for her to respond to the increase in calories and to begin growing faster! A bit of good news on Britton is that she is no longer on any oxygen support which means one less cord strapped to her face…yeah!

We have wonderful news on Lila’s and Ryan’s hearts – they double checked the PDA’s that they had with great results! Lila’s PDA was completely gone and Ryan’s was classified as “trivial.” Thank you to all who prayed for their little hearts to be healed!!! Both are growing well – Lila weighs 3 pounds, 2.4 ounces and Ryan weighs 3 pounds, 8.2 ounces. Lila has been removed from oxygen support, but Ryan will be on it for a few more days at least.

Four of the babies can now be held by grandparents as they can now maintain a good body temperature while bundled outside of their isolettes. Britton still can only be held skin-to-skin by me or Casey. Eliot has now held Jack and Britton while Grandma Stevie has held Ryan, Jack, and Brooklyn (that is Jack that Eliot is holding and Ryan that Grandma Stevie is holding in the pictures). All of the babies had a second cerebral ultrasound to check for problems with their brains and they found no issues whatsoever!! They will all undergo an MRI before they go home as one last check for any complications that may lead to long term developmental problems.

As of yesterday, the babies are one month old and continue to impress all of the doctors and nurses in the NICU. We expect that Jack will come home in the next 2-3 weeks and the rest will be home shortly after that. Then the real fun will begin!

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

Oh, one more thing. Someone asked why Eliot was allowed to go into the NICU. Seton allows siblings of any age to go into the NICU once they have been checked by the nurses to be certain they do not have any sniffling, coughs, etc. We are so grateful that Eliot has been able to experience the NICU with us!!

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

Jack Gets Some Nana Time

4 Comments 08 February 2009

We got a great surprise when we showed up to the NICU with my dad on Saturday. Jeannie, one of the nurse superstars, said to us, “So, it looks like we’ve got three holders.” Huh? Say that again? Did you say THREE holders?? Up to this point, Casey and I have been the only “holders” – we were the only people allowed to hold any of the babies. Jeannie, however, had a little surprise for us – Brooklyn and Jack had grown big enough to be bundled and held. Apparently, when the babies’ weight gets to 1500 grams (somewhere around 3 pounds, 6 ounces) they can maintain their body temperature well enough that they can be held without being skin to skin with their holder.

My dad, or “Bapa” as the grandkids know him, chose to relinquish his chance to be the third holder, however. My mom, “Nana,” wasn’t with us at the time and my dad wanted her to be the first to have the opportunity to hold one of these little bundles. So after church on Sunday, we made an unplanned visit to the NICU for the express purpose of getting Jack some well earned Nana time! My dad had to bow out again because the girls (Eliot and the two adopted little additions to the Jones family, Angel and Summer) couldn’t come into the NICU and time was limited, but I imagine he’ll get his fill of baby holding in the coming days, weeks, and months. To say the least, I think the visit went well and we are very happy to have new holders in the mix!

God Bless,
Ethan
P.S. Check out the website when you get a chance…we’ve updated the front page and I think it turned out really cool!!

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

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