Sweet Home

Tomorrow, March 18, marks 40 weeks, the original due date of this pregnancy.  When we found out we had quadruplets our new goal was to make it to February 4, or 34 weeks gestation.  Instead Ben and I are here at home holding our three month old little ones who came at 26 weeks and 6 days, and that is the miracle!  After 80 days in the NICU living on ventilators, IVs, feeding tubes and 24-hr medical assistance, all of our babies are home.

On Thursday (3/6) Nurse Lacey at Kadlec Medical Center came into the room and said this was the day they were going to be discharged. They had been at Kadlec for two weeks refining their feeding skills and getting weaned from oxygen. Although Thomas, William and Cienna were still on oxygen they were still able to be discharged.  It was one big caravan of carseats, monitors, oxygen tanks, people and supplies, but tucked in the chaos were 40 fingers, 40 toes and four sets of eyeballs. When we stepped into the elevator to leave the pediatric floor there were questioning looks then congratulations as people put two and two together, literally.

Their current weights in order of size are...
Thomas 7 lbs 7 oz (born at 1 lb 14 oz)

Gracie 6 lbs 13 oz (born at 1 lb 14 oz)

William 6 lbs 12oz (born at 1 lb 12 oz)

Cienna 4 lbs 12oz (born at 1 lb 6 oz)

The main job now is to keep them growing. We've continued to follow the schedule they were on in the hospital and do feeding and cares every 4 hours. We go through about 26 diapers a day (when everything goes perfectly) and combined the babies eat about 64 oz right now.  Feeding and cares take about 1.5-2 hrs for two adults. We have set up a makeshift nursery in the living room because of the oxygen needs, making it a lot easier to monitor all of them at once while still getting a thing or two done around the house. Because they are still working being consistent with sucking and swallowing successfully, feeding times can be stressful. One time William coughed his milk down the wrong pipe and turned blue. Thankfully the hospital had us take infant CPR and rescue breathing which more than anything helped us stay calm in  the situation. What felt like a million minutes later we had his airway clear and he was back to his normal self. I keep reminding myself that it won't be this way forever.

In the afternoons we give them "tummy time" where we put them on their bellies and let them spend time together. They make all kinds of cooing noises and seem to like being together.  When the sun comes in the glass doorway we let them soak up a little of it.      

Once home Thomas was weaned off of oxygen and hasn't needed it since. William and Cienna are competing for who will be next. Both regularly go through the night with it turned off, but then need it again during feeding times. They are attached to monitors that continuously tell us their heart rate and oxygen saturation so we know how to adjust for their needs.  Although the monitors are helpful, especially at night, looking at them and observing their color and behavior has proven to be just has important in figuring out how they are doing.

We have been overwhelmed with the support from friends, family and total strangers.  People regularly let us know they have been praying for the babies or sending positive thoughts our way. Thank You!

Here are a few pictures of life here at home...

Thank you cousin Elaine for the blankets, Dena L. for the hats, and
those who set us up with car seats!

A Leap Towards Home

Thursday afternoon (2/20):

A beaming social worker stepped into Gracie's room and announced that we were going to Washington! Not only that, but that we would be leaving in less than 48 hours. Connie had been working tirelessly on our case and had managed to secure coverage for a medical transport to a hospital closer to home.

Sunday Morning (2/23):
Yesterday morning a flight crew picked up Cienna then came back for Thomas and Gracie. In 2 hours they will be here to pick up William and me. Dad is on the receiving end, waiting to give us hugs and get us tucked into our new place.

Sunday Night:
All 4 babies are tucked into their new rooms and getting to know their new nurses and doctor.  They had quite the trip flying over the Grand Canyon from sunny Arizona to wintery Washington. They no longer have a feeding tube and are taking the bottle for all of their feedings, even Cienna. The next big goal is for Thomas, William and Cienna to get off oxygen. We are so grateful to the NICU at Banner Desert Medical Center, the nurses, doctors and staff whose skill and dedication made it possible to bring all four home to Washington.

Friday Night (2/28):
Gracie comes home! 

Feed & Grow

Happy Valentines!!!

The babies are quickly approaching 36 weeks gestational age this Tuesday, 2/18/14.  It is hard to believe that by then they will have been earthside for two months!

This was a big week for William.  Two days ago he made the big move over to the Continuing Care Nursery (CCN), took a bottle and breastfed, all for the first time (click here to see William on the bottle for the first time).  He is now in the same area as Gracie and Thomas.

CCN is the where the babies are described as being on the "feed and grow program," and that's exactly what they do: eat eat eat and grow grow grow. William and Gracie just hit 5 pounds and Thomas is moments away from 6.  I think the boys are seeing who can grow a triple chin first.  Since they are better breathers now they are able to take the bottle and/or breast feed.  Every 3 hours they are assessed to see if they are able to do this, if not their food is given via NG tube. When they are able to take all of their feedings without the use of the NG tube and have no major oxygen needs, they will be ready for discharge from the hospital. Right now the boys are both still on oxygen and each day we try to wean them off of it. Gracie has been off oxygen for over a week and we no longer monitor her oxygen levels.  The main task she needs to accomplish before discharge is to nipple all her feedings and no longer need the NG tube. 

My role in the feed and grow program is to come up with the milk. I currently get about 30 ounces of breastmilk a day from pumping and I have been freezing this milk ever since the babies were born. As of two days ago their food needs have surpassed what I am able to produce by 10 ounces a day and it is showing as the babies are getting chunky.

Thomas is 5 lb 13.5 oz

William is 5 lb

Gracie is 5 lb 2 oz

Cienna is 3 lb 5 oz

Cienna is coming along at her own tiny pace.  She is small and so delicate but bright, alert and one active little girl.  One day respiratory therapy came to check on her and she had managed to pull herself out of her nest and roll over to the isolette window and was looking out at all the activity in the room. (Click here to see a short video of her from today.) She and William had their eye exams yesterday to check for retinopathy of prematurity (ROP).  Along with Gracie and Thomas, she is in the clear!  William has early ROP but at his age it will probably resolve on its own. We will continue to monitor him.

A huge THANK YOU to each of you for your love and support that is given in so many ways!  From watching the dog when Ben is out of town to sending a positive thought or prayer our way, your involvement has meant the world to us and eased the challenges of day to day NICU life.

50 Days!

Fifty days old!  But today also marks 34 gestational weeks.  Today is the day we were hoping our babies would be born. Instead they have been learning to navigate life in the real world and they just amaze us! 

Most exciting news is that Gracie and Thomas are no longer in intensive care! They were moved to Continuing Care Nursing (CCM) on Sunday.  Gracie has been completely off of all oxygen support and breathing on her own for 72 hours so far . Thomas is on 1 liter oxygen from the wall, free from the vent and doing well.  He and Gracie have been periodically nursing with a bottle and working on developing their "suck, swallow and breath" skills and today they both got to try nursing from the breast.  In addition, both have been able to regulate their own temperatures, wear clothes, and be swaddled.  This has not come easy.   In order to graduate to CCM a baby needs to be completely weened from the ventilator and be out of critical condition in terms of sickness.  William and Cienna are well on their way, too.  Tonight William is going to wall oxygen and Cienna is a couple days behind him.  

There have been some challenges.  Last week Thomas and Cienna both got nonMRSA staph infections. Thankfully the infections were caught early and treated with Oxacillin. However, Cienna's infection initially got into her bloodstream so she will be on antibiotics a little longer than Thomas.  Both babies are now perky and responding well to treatment.

Despite Cienna's setbacks (she is the littlest and had intrauterine growth restriction), she has just reached 3 lbs! Yesterday she had her eyes wide open and avidly sucked her pacifier for 25 minutes.  No doubt she will be ready to nurse when she is fully off of the ventilator.  

They are also plumping up, current weights are...

William  4 lbs 3 oz

Cienna   3 lbs 1 oz

Gracie    4 lbs 5 oz

Thomas  4 lbs 14 oz

Growing Up

Yesterday marked 32 gestational weeks and this last week has been a wondrous week of progress for each one of the babies.

All babies are now over 1kg, even Cienna, the littlest. The other three are over 3 pounds!

Thomas: 3 lb, 8 oz
Gracie: 3 lb, 3 oz
Cienna: 2 lb, 12 oz
William: 3 lb, 7 oz

All babies are currently on momma's milk only! In addition their PICC lines have been removed. They have also been growing. Here are their lengths at birth followed by their current length:

T: 14 inches, now 15.75
G: 13 inches, now 15.75
C: 11.75 inches, now 14.6
W:  13.25 inches, now 15.35

Most exciting is that Gracie and Thomas have been off the ventilator for about a week now! In fact, Gracie is on just 1 liter of oxygen from the wall. Cienna is still working on getting off the ventilator. Today they started her on a 5 day course of steroids (dexamethazone). On day three (tomorrow) they will try to take her off of the ventilator to see how she does. William is also getting weaned off his ventilator little by little as they lower the settings allowing him do more breathing on his own.

On Friday they each had an eye exam to check for Retinopathy of Prematurity (ROM, click here to read more about it). They are at high risk for this simply because of being born so young. So far the report is good but they will continue to monitor for this for a few more weeks. From my understanding, if a baby develops ROM it is quite treatable.

They also had their third brain ultrasound in which the doctors look for hemorrhaging. Again, a good report. Everyone is in the clear so far and they will not have another one until they are discharged. Speaking of discharge, one of the doctors thought that within 3 to 4 weeks the babies would be ready to go to a step down unit and possibly be ready to be transported back to Washington!

Here they are this week, wearing hats that were given to them by volunteers:

4 Weeks Old

Four weeks ago Thomas, Gracie, Cienna and William arrived! It has been amazing to watch them grow. As of last Saturday all of them have had their PDA surgery. Last Friday William finished his antibiotics and an echocardiogram revealed that his patent ductus was still wide open and his heart had enlarged in an effort to compensate so surgery was scheduled the next morning. This week he has been recovering and today he was able to be held for three hours, a great sign of him moving forward and doing well. When we provide kangaroo care (holding a baby skin to skin) we monitor the baby's vital signs to determine if it is a "good thing" or causing the baby stress. When it is stressful for the baby his/her oxygen saturation will drop and/or heart rate and respirations will increase. While holding William today his oxygen saturation shot right up and remained high! He looked so peaceful and happy.

Right now the babies are in the stage where they are learning to digest momma's milk. This is no easy task since they were born so early and the signal between the brain and bowels isn't firmly established. As a result, the babies each have a feeding tube and milk is carefully measured according to the ability of the particular baby to digest and process it. Thomas is in first place. Two-thirds of his nutrition now comes from milk and today he had TWO stools and both were no longer meconium but resulted from digested milk. By the end of the week it is possible that 100% of his nutrition will be from milk. Fifty percent of Gracie's nutrition is from milk and she is getting better at digestion. Cienna is getting about one-third and William is just starting up again since he had to be off all food due to surgery.

They are growing before our very eyes. This week...
Thomas grew 9 oz and is 2 lbs, 14 oz
Gracie grew 8 oz and is 2 lbs 13 oz
Cienna grew 8 oz and is 2 lbs 2 oz
William grew 6 oz and is 2 lbs 13 oz

Here are pictures of them taken the day after they were born followed by pictures taken this last week as well as a picture of me from what seems like a lifetime ago.

Thomas (top), Cienna (left), Gracie (right), William (bottom).
Thanks Josiah for the layout!