The Anti-Walnut Campaign

Food allergies- when food is the enemy. Allergic reactions range from the mild rash to the very scary anaphylaxis. We have known for some time that little Ellie Rose is allergic to walnuts but thought it was prudent to pursue testing to rule out any other allergies.

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What happens in the body to make your child puff up like a puffer fish?

The spectrum of allergic responses to food trigger is modulated by the immune system. It is important to note that not all allergens result in “Food anaphylaxis” or are IgE-mediated.  The difference in how the immune system responds results in the array of visual symptoms. The role of specific cells and mediators remains a hot topic for debate. Most people believe that more mild food allergy and intolerance symptoms are the result of increases in histamine without a change in basophils, however some have found that eosinophils increase. Basophils and eosinophils are both granulocytes, and white blood cells active in immune responses. The basophils are called to the front lines to interact with foreign bodies and are involved in inflammation by releasing histamine and heparin; histamine dilates blood vessels leading to warmth and swelling while the heparin prevents blood clotting. Eosinophils are phagocytes and consume, or “Eat” foreign bodies and can help to calm inflammation.

IgE, or immunoglobulin E, is an antibody that leads to a systemic inflammatory cascade which utilizes mast cells. Mast cells are another white blood cell rich in histamine and heparin. The IgE response causes reactions in the nose, lungs, throat or on the skin. Epinephrine is the antidote for anaphylaxis; at recommended doses epi can constrict the blood vessels and alleviate symptoms of swelling and itching via α-adrenergic pathways and can restore airways by β-adrenergic properties. In low concentrations, epinephrine can also block the antigen, or allergenic protein.

At Ellie’s first encounter with walnuts, she simply didn’t like them and told me they hurt her mouth. I, originally, thought it was a new texture that she needed to get used to. At second try a few weeks later, her face quickly swelled causing her eyes to swell shut and her breathing became labored. I quickly rushed to get Benadryl (anti-histamine) which calmed her body down and she recovered in a little less than an hour. Since that day, we have carried out a strong educational campaign among the quints and her caretakers to strongly reduce the risk of another exposure. The campaign has worked but knowing that she will be starting school in a few short months, we thought an epi pen may be a great tool in our tool box. This warranted a visit to Allergy Clinic.

Big Eight

Food allergens are water-soluble glycoproteins that are typically stable to heat and acid. The most common food allergens are called the big eight and include:

  1. Cow’s milk
  2. Chicken Eggs
  3. Peanuts and Legumes (almond, pecan, coconut, cashew)
  4. Tree Nuts (Brazil nut, chestnut, hazelnut, pine nut, walnut)
  5. Cereals (Wheat)
  6. Soy
  7. Fish
  8. Shellfish

In clinic, the team tested Elliott using the skin-prick test. Since Elliott consumes peanuts, almonds and coconut safely, they chose to only test those nuts, legumes and tree nuts that are unknown and most similar to walnuts: Black walnuts, English walnuts, Hazelnuts, Pine Nuts and Pecans.

The skin prick test is completed by scratching the surface of the back while applying a diluted allergen solution. Then, a labeled grid is drawn around the test area. The control is always included to demonstrate a sample “wheal,” or raised, red and itchy bump. After 15-20 minutes, the team can see which allergens cause a response. It is important to note that the size of the wheal does not necessarily correlate with the allergic response. So, as one can see in Ellie’s photo the A column demonstrates her response to the control solution and the two types of walnuts, as well as, pecans in column B. Despite, pecans larger than walnuts it may not produce anaphylactic reactions. Of course, we have added pecans to Ellie’s list and have restarted our walnut and pecan allergy campaign. We also left the office with school plans and a prescription for epinephrine.

Now, while Elliott won’t be eating any walnuts or pecans in the near future, the doctor said it is unlike wheat allergies/gluten allergies and we can keep them in the house. They shared that despite popular knowledge, nuts do not commonly produce allergic responses via airborne contact. Therefore, Theo can still enjoy his walnuts at snack time despite sitting right across from Ellie.

To lighten up this post, I’ve also provided some fun Snapchat photos which were taken while waiting for the Doc.

One Happy Family

The V-7 is one happy family! After one week of having the quints home, reality has settled in and it truly feels like we are one big family. There have certainly been some trying moments in the last week, but overall we are amazed at how well the children have adjusted to being at home. They slipped right into our “care” schedule, are getting to be more comfortable in their cribs, and their feeding skills are drastically improving.

Baby Pinwheel: Lily (Green), Theo (Blue), Ellie (White & Pink), Kali (Yellow), Bella (Pink)

Baby Pinwheel: Lily (Green), Theo (Blue), Ellie (White & Pink), Kali (Yellow), Bella (Pink)

 

We have made several trips to their primary doctor for weight checks. Their growth is a primary concern upon discharge and thus remains a primary goal in the outpatient setting. Often times their weights will be checked every few days, but more often one time per week. All of the quints are growing somewhere between 15 to 30 grams per day, which is an appropriate growth velocity for their age. The higher end is almost an ounce per day. We are excited to see them tracking on their growth curves. Often times, we are not sure where they are packing away the pounds, but when it comes to Theo we are positive its building that melon head and that Bella is tucking it away in her sweet cheeks.

This week has also been quite busy socially! The quints have met their great Grandpa and Grandma, great Aunts, and cousins.

Beautiful Family

Beautiful Family

Love from Aunt Debbie. I think she's done this before.

Love from Aunt Debbie. I think she’s done this before.

Love from Aunt Darla

Love from Aunt Darla

Theo & Grandma Vanderwall

Theo & Grandma Vanderwall

It is such a pleasure to see all of the love these little kiddies are getting. It makes for one happy family!

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

TheoSmileyFrog

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

Isabella2

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

Lillian1

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

Elliott2

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!

2012-Honda-Odyssey-Exterior-Alabaster-Silver-Metallic

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.

WhatsAStuffedDisneyAnimalGottaDoToGetSomeGrubAroundHere

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!

Two Simple Acts

Mama Kanga and her Roo's, Lily (right) & Kali (left)

Mama Kanga and her Roo’s, Lily (right) & Kali (left)

When becoming a new parent, best practices, guidelines, and all of the “must-do’s” flood our mind.  All mom’s and dad’s want the best for their children. I find peace in getting back to basics and focusing on two simple acts: Kangaroo care and Breastfeeding.  Both of these can be practiced whether a parent takes their newborn home shortly after birth or for those trying to learn how to be mom and dad in a NICU setting.

Kangaroo care is an endearing term used to describe skin-to-skin holding.  This snuggle time has benefits for both mom, dad and baby. The newborn benefits from skin-to-skin holding because they learn their parents’ scents. The sense of smell is the first to develop and is quite strong, which is why many encourage the use of scent cloths. Additionally, the baby’s vitals mimic those of the person, which is holding them and can help to regulate their heart and respiration rates.  When mom is caring for her baby this way, the infant can be soothed by the sound of her heartbeat since it is what they heard for many months while in utero. Kangaroo care can foster quality sleep for infants. This is why it is typically done for at least 90 minutes at a time. We know that sleep is critical for a newborn, or preemie because it encourages both growth and healing. If time is of the essence, swaddling and hold the baby is also beneficial and many hospitals have “cuddlers” who are happy to help.

"Nana B" & Bella cuddling

“Nana B” & Bella cuddling

Kangaroo care also benefits parents as a unique bonding experience. One is able to simply hold, love and adore their baby. This is also a great time to sing, read or gently speak to the baby while they drift to sleep. A mother can specifically benefit from this practice because oxytocin is released during infant bonding.

Oxytocin is known as a love hormone, but plays a significant role in building, maintaining and letting down a mother’s milk. It also can cause uterine contractions that help the uterus return to its normal state. Therefore, it is evident how the first act leads to our second- breastfeeding.

The breast is best! Breast milk is often referred to as “liquid gold,” due to its nutritional superiority over other methods of feeding. A mother’s milk may vary in composition of nutrients, but on average it is 4.5 % fat, 7.1 % carbohydrate and 0.8-0.9 % protein. It is produced in the body by the mammary glands by pulling sugar, protein, cholesterol and other nutrients from the mother’s bloodstream. Therefore, good nutrition is also very important during the “4th trimester.” Most hospitals recommend fortifying breast milk to increase the calories from the natural 20 calories per ounce, to 22-24 calories per ounce. These fortifiers can also supplement the baby with much needed vitamins and minerals.

UnknownBreast milk is also unique because it contains IgA, or Immunoglobulin A, which is critical to helping to build the infant’s immune system. IgA is quite high in breast milk from day 10 through the 7th month. Additionally, if the mother is breastfeeding, the child can expose the mother to their bacteria and in turn the mother will create antibodies to fight the bacteria, which in turn will be delivered back to the baby via the breast milk.

I have never breast-fed; I have only pumped, but I certainly hope to in the future. The act of breastfeeding is a remarkable bonding experience that also provides an outlet for giving the infant attention. Pumping, with a caretaker present, is also not bad and can grant mother’s a few minutes alone to think, pray, or even grab a quick snack. Another benefit of breast feeding for mothers is that it can foster post-partum weight loss to help the mother achieve a healthier weight after pregnancy. Typically, mothers burn 300 to 500 Calories when breastfeeding or pumping 8 times per day, or every 3 hours. Again, it increases oxytocin which assists the uterus in returning to normal size. For further tips and information on breastfeeding, visit La Leche League.

Both of the acts described above may be simple on paper, but more difficult to practice in daily life. I hope the benefits listed above encourage mom’s and dad’s to explore these ways to attend to, bond and communicate with their baby.