Offering Thanks on World Prematurity Day

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This week we honored world prematurity; Offering gratitude to those who walked with us, served us and cared for us on our journey from birth at 29 weeks and one day to four years old. We too easily recall all of the sad conversations that were had, scare tactics used and doubters early on. But, we also recall the reassuring love, guidance and strength which we heard much louder. Throughout the month of November each year, many draw their attention to the life-saving research, treatments and support that give every baby a fighting chance.

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Giving thanks to the one above!

We felt that the V5 were old enough today to participate in thanking those who were critical in their survival from Dr. John Elliott and his team at Banner Desert to the elite NICU staff at Meriter. We honored world prematurity day by perusing their memory boxes, watching their first year videos, visiting the Meriter NICU to offer our thanks and enjoyed a special lunch!

Another day to praise Him for our blessings and thank His angels here on earth!

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A Memorable Meeting

We had the most memorable meeting of our lives nearly one year ago. After the miraculous delivery of our quintuplets, now fondly known as the V-5, I had to wait over 24 hours until I could meet them.

This moment has a very special place in my heart…

As we prepare to celebrate the V5’s first birthday, we will be releasing video compilations of each quint beginning with Mr. Theo! Stay tuned!

Looking Back and Looking Forward

Babys First cmas

All we wanted for Christmas was a Silent Night, and we got it! 

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At the conclusion of the holiday season, we celebrate not only the kids sleeping through the night but the passing of a memorable year. It certainly is a time of recollection; I ask myself: where have we been and where are we going?

A, 12-25-2013

It is hard to believe that at this time last year we were not even pregnant. We were amidst the emotional journey of trying to conceive. After years of trying, we found out in March, 2013 that we were going to have a family all at once.

The news that we were going to have quintuplets definitely took a few weeks to digest, and even longer to wrap our minds around. As many know, the emotional journey did not stop at conception but rolled on. With discussions about multi-fetal reduction and attempting to navigate the best possible perinatal care, our pregnancy was a trying journey.  In May, I said goodbye to Frank, family and friends in Madison and hello to Mesa. Arizona brought new friends and the best doctor I have ever worked with. It truly seems like just yesterday that we hopped on a plane, praying that we would not be too late to have our urgent surgery. I also cannot believe that Frank and I were apart for almost 3 ½ months. Despite the miles that separated us, our marriage grew greatly during that time.

Then during the early afternoon on August 3, a nurse came into my hospital room and shared that were going to have babies in a few hours. With a bang we had a beautiful family. Many know the trials and tribulations that followed; the life of a NICU parent.

I sit amazed. I am truly awestruck at how God’s hand has cared for us every step of the way, His provision through His strength, Spirit and people never left us and continue to be ever present.

One of the many ornaments and generous gifts that we received from from our family at the Community Christian Church (Lincolnshire, IL). Many thanks!

One of the many ornaments and generous gifts that we received from from our family at the Community Christian Church (Lincolnshire, IL). Many thanks!

I look at my beautiful children, each a unique blessing, and am overwhelmed by His handiwork. The quints are now 5 months old. They are happy, healthy and developing right on schedule.

Lillian Grace

Lillian Grace

Kali is not so sure about this Santa character.

Kali is not so sure about this Santa character.

But, Kali definitely loves her Grandpa!

But, Kali definitely loves her Grandpa!

Theo loves his pinky hippo

Theo loves his pinky hippo

Bella sporting her Christmas outfit

Bella sporting her Christmas outfit

Baby Ellie is pretty in pink

Baby Ellie is pretty in pink

What else could we ask for?  Where are we going?

Instead of choosing a self-improvement goal, I resolve to soul-improvement and to continue to be present with my family and to truly seek what the Lord desires for our family and I. On January 11th, we will dedicate our children to God at Blackhawk Church. I am excited to commit each one of our miracles to their heavenly Father for His will and His purpose.

I close with a prayer from Billy Graham,

 “Our Father and our God, as we stand at the beginning of this new year we confess our need of Your presence and Your guidance as we face the future.

We each have our hopes and expectations for the year that is ahead of us—but You alone know what it holds for us, and only You can give us the strength and the wisdom we will need to meet its challenges. So help us to humbly put our hands into Your hand, and to trust You and to seek Your will for our lives during this coming year.

In the midst of life’s uncertainties in the days ahead, assure us of the certainty of Your unchanging love.

In the midst of life’s inevitable disappointments and heartaches, help us to turn to You for the stability and comfort we will need.

In the midst of life’s temptations and the pull of our stubborn self-will, help us not to lose our way but to have the courage to do what is right in Your sight, regardless of the cost.

And in the midst of our daily preoccupations and pursuits, open our eyes to the sorrows and injustices of our hurting world, and help us to respond with compassion and sacrifice to those who are friendless and in need. May our constant prayer be that of the ancient Psalmist: “Teach me, O Lord, to follow your decrees; then I will keep them to the end” (Psalm 119:33).

We pray for our nation and its leaders during these difficult times, and for all those who are seeking to bring peace and justice to our dangerous and troubled world. We pray especially for Your protection on all those who serve in our armed forces, and we thank You for their commitment to defend our freedoms, even at the cost of their own lives. Be with their families also, and assure them of Your love and concern for them.

Bring our divided nation together, and give us a greater vision of what You would have us to be. Your Word reminds us that “Blessed is the nation whose God is the Lord” (Psalm 33:12).

As we look back over this past year we thank You for Your goodness to us—far beyond what we have deserved. May we never presume on Your past goodness or forget all Your mercies to us, but may they instead lead us to repentance, and to a new commitment to make You the foundation and center of our lives this year.

And so, our Father, we thank You for the promise and hope of this new year, and we look forward to it with expectancy and faith. This I ask in the name of our Lord and Savior, who by His death and resurrection has given us hope both for this world and the world to come. Amen.”  © 2008 Saturday Evening Post Society.

The Race Home

Stork-with-Blue-BlanketThe quints are one week from being full-term babies and the race is on! Bets have been placed by many on their healthcare team as to who will make it home first.

This past week has provided some challenges on their road home, including getting their 2-month vaccinations, which included:

The doctors warned us that the kids may not be themselves for about 24 hours after the vaccinations and they were right. The most common symptoms include:

  • Fever
  • Pain at the injection site
  • Poor appetite
  • Fatigue/Sleepiness
  • Increased Spells
  • Periodic breathing

Everyone spiked a fever and ended up sweating through their clothes. Their appetites were not the best the following day either due to them being a bit sleepier. Honestly, the best way to describe it is that all of their “issues” from a few weeks back, reared their ugly heads.

Silly Kali Mae who may be one part screecher monkey and another part parakeet.

Silly Kali Mae who may be one part screecher monkey and another part parakeet.

For example, Kali who tends to “bear down,” meaning to grunt to either pass gas, poop, or protect her airway from reflux, was doing so much more often. When she bears down she often forgets to breathe… she isn’t the best multi-tasker, yet. The frequent bearing down led to poor respiration and thus desaturation (decreased oxygen in her blood) where she had to be put back on her nasal cannula to receive extra air flow. Luckily, she only had to remain on it for 24 hours. The unfortunate news is that because she had this “Spell” she got 5 days tacked on to her stay before she can be discharged. So, Ms. Kali’s discharge is now projected for October 15th.

Lillian Grace playing peek-a-boo when she is supposed to be snoozing.

Lillian Grace playing peek-a-boo when she is supposed to be snoozing.

Lily and Bella are now focusing primarily on waking up and staying alert enough to eat by mouth. These two are the last with their feeding tubes. They are currently meeting 50% of their nutritional needs by mouth and need to get to 80% before they can consider sending them home.

Bella who somehow has a striking resemblance to Dwight Schrute from the Office in this photo.

Bella who somehow has a striking resemblance to Dwight Schrute from the Office in this photo.

So, that leaves Mr. Theo and Ms. Elliott who have been favored by Frank and I to win the race home for some time. These two, despite their bowel surgeries, will most likely be the first ones home and arriving via stork, or Honda Odyssey, this weekend!

Mr. Theo snug as a bug in his sleep sack.

Mr. Theo snug as a bug in his sleep sack.

Our little doll face, Elliott Rose.

Our little doll face, Elliott Rose.

In other news, Frank and I are doing well. We are so excited that our NICU journey is coming to an end, and are more than ready to start the next chapter at home! Frank is coming out of his busy season at work and is planning on taking some time off as the kids trickle home.

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I am excited to have him home, so we can establish what life will look- aka a routine- as a family. I am also excited to share that I have returned to my pre-pregnancy weight. I share this for three reasons:

  • One, I believe it is a testament to good nutrition and regular exercise (just practicing what I preach),
  • Two, it is clear to me that weight truly is just a number because my body is definitely not what it was before in terms of composition therefore, operation “rebuild your temple, based on I Corinthians 6:19-20), remains in full swing, and
  • Three, because it has opened my eyes to a whole new population of people I want to empower for better health- Moms!

We also wanted to share with those who were praying for our insurance appeal that we had our grievance hearing. Unfortunately, the committee decided to uphold their decision to deny payment of our perinatal care in Arizona. We would appreciate continued prayer for this journey as we trudge on to the next level. It has become a moral battle of proving the value of life. We are now fighting for more than just our five miracles, and feel as though we have the opportunity to speak for parents who were encouraged to consider multi-fetal reduction and may have moved ahead with those decisions, and thus had to grieve those losses. We also will not back down because we believe in the importance of having a choice in healthcare, and speak for those who may have thought at one point they had no other choice but to give in, or to give up. Most importantly, we also speak for all of the children who did not get a chance at life. We are fired up and ready, so please pray that the committee in this next round would be more open to our appeal.

As always, we thank you for your well wishes, prayers and support. Please know you are a valued citizen of the village that is helping to raise the V-5!

The V-5 are 2 months old!

The V-5 are 2 months old today!

At these monthly milestones, I look back and truly cannot believe all that we have experienced in the last 2 months. It seems like just yesterday that I was trying to figure out how to change the diaper of a 2lb baby in an isolette without lifting them, while being blinded by their “bili light.” Today, I can walk right up to their crib, move a few cords, and lift them up to comfort them. I am eager for the day for them to come home where we can snuggle gown, glove and cord free!

It is also amazing to watch them grow and develop. We knew at birth that they had defining characteristics, but with each day they look more and more different. We thought we would share this growth one-by-one.

Big Brother Theo

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Theodore Joseph

Theodore Joseph

Theo keepin' it real

Theo keepin’ it real

Theo celebrated his 2-month birthday with a celebratory surgery. He had his reanastomosis today where they reconnected his ileum, or the lowest portion of his small intestine. His surgery went very well and they are planning to extubate him in the next 24 hours. He had his spontaneous bowel perforation on day 3 of life, so we were very happy to say goodbye to the smelly ostomy bags today. Now, at 6lbs and 7oz this little boy is a fantastic eater and we have no doubt that once he is recovered from his procedure he is in the running to be the first or second one home.

Big Sister Bella

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Isabella Marie

Isabella Marie

Kung-Fu Bella

Kung-Fu Bella

Isabella has been our rock with no significant issues from day one. She has become the sleepy one of the bunch, nicknamed Sleeping Bella, aka Sleeping Beauty, and has maintained her quiet personality. She is learning how to eat by mouth and is a champ when it comes to taking a bottle. Breastfeeding is not her forte partially because she’s a biter- not fun. This little beauty is now weighing in at 5lbs and 14oz and leads the girlies in size. A few of the nurses bet that she will be the first one home.

Ms. Lillian Grace

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Lillian Grace

Lillian Grace

Lily's Trademark Smirk

Lily’s Trademark Smirk

Little Lily continues to amaze us with her resiliency. We have had many scares following her grade 2 IVH with surrounding PVL, but she has showed no signs that this is hindering her development. She is one of the stronger eaters in the bunch and her growth has also been stable. She now weighs 5lbs and 13oz.

Kali-Mae

Kali

Kali Mae

Kali Mae

Kali's impression of Derek Zoolander

Kali’s impression of Derek Zoolander

This little monkey maintains her feisty personality. She has been struggling with GER the last several weeks, and is now on a formula for spit-ups. It was quite difficult to see this happen, since breast milk has so many benefits. But, when I see how much better she feels and looks, I know it was the right choice. We are hoping that she will quickly grow out of it and be back on mommy’s milk soon. Kali is on the smaller size, but is holding her own with the other ladies in the room at 5lbs and 12 oz.

Baby Ellie

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Elliott Rose

Elliott Rose

Our little Peanut

Our little Peanut

Our little Princess Ellie also celebrated her 2-month birthday with a reanastamosis. She had her jejunum reconnected and was able to be extubated today. It was wonderful to see her breathing on her own and even smiling after they removed the tube. She truly is a tough cookie. Her tolerance for pain and her ability to self-soothe are amazing. We have no doubt that this was only a speed bump on her journey home. She is our little peanut at 5lbs and 7oz, but keeps pace with Theo in the eating department and definitely may beat the other girls home.

We are so grateful for the continued well wishes and prayers for the V-5. Hopefully, in another month we will be snapping these photos from the comfort of our own home!

7 weeks old

Time is flying by here in the Madison NICU. The V-5 are now 7 weeks old, and a corrected gestational age of 36 weeks, or 9 months.

Our family has been very busy the last few weeks. The quints spend their days learning to eat by mouth, snoozing and growing. They are all approaching the 10th percentile for weight-for-age with an increasing trajectory. The ladies and Theo are at or near 5lbs:

Bella is

Bella is 5lbs 1oz

Lily is

Lily is 4lbs 15.5oz

Kali is 4lbs 14oz

Kali is 4lbs 14oz

Ellie is

Ellie is 4lbs 10oz

Theo is

Theo is 5lbs 3oz!

We are so excited to watch their progress as they learn how to take a bottle and breastfeed. Theo takes the cake…literally, for being the bottle and breastfeeding champ! We are fairly certain that if we let him, he would chug his bottle down in 3 seconds flat. The ladies are also progressing in their pre-feeding and feeding skills. Lily is by far the most interested, followed closely by Bella. Ellie and Kali are still quite content with having their food trickle into their bellies.  The quints have to be able to meet 80% or more of their nutritional needs by mouth before they can have their feeding tubes pulled. They also have to be able to sustain their weight and continue to grow appropriately on p.o. (by mouth) feeds before they can come home.

There are other goals that they must meet prior to coming home. They must outgrow their apnea and bradycardia of prematurity, or their “A’s and B’s”. Currently, they are all attached to monitors that measure their heart and respiration rates, as well as, their oxygen saturation. All of the kids continue to have moments when their heart rates drop (bradycardia) and their respiration rates continue to fluctuate. The only quint that is truly struggling with this task is Kali.

Daddy and his Kali Monkey

Daddy and his Kali Monkey

The medical team has assured us that this is due to her GERD (Gastrointestinal Esophageal Reflux Disease) and not lung or heart disease. We did find out via an ECHO last week that Kali does have a small PDA (Patent ductus arteriosis) and a muscular Ventricular Septal Defect (VSD), but again they have told us that these are unrelated to her difficulties maintaining her oxygen saturation and that both will close as she ages.

The quints have successfully accomplished the third task required for coming home- maintaining their temperatures outside of the isolette. All of V-wall 5 are in cribs! Ellie and Theo have larger cribs because they are in a larger room. The other ladies are in smaller tub-like cribs. Nevertheless, they are champs at regulating their temperature. This means they can come out to play more often!!

Bella with Uncle JD

Bella with Uncle JD

Grandpa T and Lily Bug

Grandpa T and Lily Bug

Whispering Sisters (Bella & Lily)

Whispering Sisters (Bella & Lily)

Daddy and Mommy have been busy, too. We have been finishing up their nursery with all five cribs, sorting and color-coding outfits and blankies, and cleaning and child-proofing the house. We also recently bought a 2012 Honda Odyssey from Zimbrick Honda, here in Madison. They were fantastic and met us at our price-point. We are very happy with our baby mobile; complete with 8 seats, and five of which have a LATCH for car-seat safety.  Many thanks to Justin and the Gurnee Police Department for helping us to install our seats!

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It will still be a few more weeks before anyone comes home for the reasons mentioned above. Ellie and Theo will have their bowel surgeries, anastomosis, the first week in October and then will have to stay in the hospital until they heal and can eat normally again. While we wait to welcome our five little miracles home, we spend our days at the NICU doing what we can to support their growth and development.

Homecoming

LoadEmUp

The V-7 were reunited this past week. On Sunday, Theo and I landed in Madison after an uneventful flight. Theo was a champ and slept most of the way.

Theo is happy to be home

Theo is happy to be home sporting his new do!

It was quite emotional to walk into the Madison NICU and realize that we were all here, and here to stay. I just stood for a brief moment at the entry way and could see all of the entrances to their rooms and my husband standing right in the middle. My mind took me home to when some day soon I would be able to stand in the hallway and peer into their nursery and do this exact same thing. Needless to say, many happy tears followed.

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Our 6-seater table from the wonderful Tille family featuring new stuffed animals from Grandpa T

The following day, our family joined us for the reunion on Labor Day. We also were welcomed by NBC, ABC and Fox/CBS who helped to capture this exciting event for our family, but also for the city of Madison as we are the first quints to reside here. Our interviews with NBC and ABC are featured below:

The remainder of the week has truly flown by. The V-5 celebrated 1 month on Tuesday and in the NICU this celebration includes a battery of tests. All of our kiddos had repeat head ultrasounds and eye examinations to assess their eyes’ maturity, and to rule out retinopathy of prematurity (ROP). Also, Bella had an echocardiogram to investigate her persistent murmur. All of the quints have murmurs, but we now know that Bella does not have a PDA, Patent Ductus Arteriosis. Theo also had an examination of his intestines to see if they could begin refeeding and wake up his large intestine, just like his little sister, Ellie.

All of the tests brought reassuring news, except for one. Our little Lily Bug had minor PVL, which is Periventricular Leukomalacia. The good news is that her grade 2 brain bleed is resolving and healing, but this new finding of PVL was disheartening. PVL is an injury in the brain that affects the white-matter neurons. Infants with PVL most often display deficits related to motor control (movement), developmental delay and are at a greater risk of cerebral palsy and epilepsy later in life. Only time will tell if our little Lillian will face further challenges.

Lily and Daddy Enjoying K-Care

Lily and Daddy Enjoying K-Care

All of our little miracles are now a corrected gestational age of 34 weeks, which means we get to truly start focusing on feeding and growing. Enter this excited Mama who cannot wait to begin truly breastfeeding. No offense to my trusty pump, but nothing beats nuzzling with your babies. The next few weeks will help us to further assess Lily’s potential for feeding and motor issues, as well as, reveal our kiddos’ abilities to suck, swallow and breathe- a touch task for preemies.

bouncy seats

It has been quite a busy week, but overall the Vanderwall family is over-joyed to be reunited. We are forever indebted and grateful for the all of the new and donated items that awaited ua at our home. I have had so much fun going through all of the items, organizing and partaking in some long-overdue nesting. So, thank you once again from the bottom of our hearts for all of the love, support, financial contributions and gifts that we have received. I can confidently say that the quints now have everything they need for when they arrive home. The only remaining item is a way to get them home. Next up on the to-do list…the V-7 mobile, or perhaps we’ll give new meaning to a VW bus!