Hazel and Grant in front of the Christmas tree (2015)

Wrapping up 2015

DSC_4387-family-home-1-year-laterWe haven’t posted for a while because summer has afforded us the opportunity to finally get out and about with the kids. The summer flew by and now even Christmas has passed! Although challenging at times, it has been great to get out with the kids and spend time outside going for walks, even for shopping trips and other errands. On trips like this, Hazel and Grant get many looks and people have admired their “sunglasses” (they have transitional lenses). On occasion we met others who had multiples, preemies and even tube-fed babies. We would share stories and were amazed at the coincidences.

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Hazel, Grant and Mommy at the local classic car show.

In June we took the kids to the local classic car show. Grant was startled when a nearby car with big pipes fired up, and Hazel was unphased. June also ushered in the arrival of their first teeth. Within hours of each other, both sprouted two teeth in the bottom. Thankfully, it ended a rough couple weeks of teething – for the time-being. Then there was Father’s Day, which was our second Father’s Day, and we went out to dinner and had a nice meal on the patio. Hazel & Grant did so well. This was the first Father’s Day out of the hospital so it was much more enjoyable for us all.

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Father's Day 2015
Father’s Day 2015

The kids celebrated the 4th of July in low-key fashion. It also happens to be Grandma’s birthday so we had a small family party with her as well. We also had a small display of sparklers and fountains in our driveway to celebrate, but avoided the crowds, mosquitos and noise of the big fireworks.

Grandpa retired in July, so we had their first unofficial visit to the dentist.

Grant getting his first dental checkup from Grandpa.
Grant getting his first dental checkup from Grandpa.
Hazel getting her first dental checkup from Grandpa.
Hazel getting her first dental checkup from Grandpa.

In July we took the Hazel and Grant to one of Julie’s childhood spots, a place her grandparents took her often. Julie has said her Grandpa George always used to say, “There’s always room for ice cream!” Selma’s has great ice cream and it’s a nostalgic place in Afton and our hope is to return there each summer a share stories with them about their great-grandparents while enjoying some delicious ice cream!

In August, we went to the county fair. We saw animals (both exotic and domestic) and Hazel and Grant even got to pet a bunny! They both sat in the big ladder truck from the fire department, had some Dole Whip and even tried a corn dog (well, not really).

Hazel trying a corn dog
Hazel trying a corn dog

 

Grant reaching for the camera
Grant reaching for the camera

In September, outdoor activities included chilling out on the front lawn. On one of the days it got a little warm after a while but we had fun. We also went to the community day at the bank and the kids enjoyed strolling around with Grandma, the petting zoo and ice-cream the most. We also made a trip to our favorite apple orchard and they enjoyed tastes of fresh apples.

apple-orchard

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September 4 – their 1 year adjusted birthday. We had a mini-celebration with immediate family, Mexican Fiesta style, and even had cupcakes again. This time both kids got into the cupcakes, with Hazel being just short of requiring a power wash to clean up.

DSC_3987-eating-cupcakes-on-adjusted-bday

DSC_3992-grant-eating-cupcake

DSC_3969-family-at-1-year-adjusted

Hazel and Grant got to go to a tractor parade (yes, apparently they exist) in the City of Grant. Grant wanted to be grand marshal, but we settled for watching from the sidelines and cheered on Grandpa in his tractor. We are hoping they will be a part of the parade…maybe next year?

DSC_4132-tractor-parade-cheering-on-grandpa DSC_4103-hazel-and-auntie-at-tractor-parade

In October we participated in a memorial service for infant loss, where we read Marissa’s name aloud and lit a candle for Marissa and released a beautiful white dove in her memory. Hazel and Grant each got a cute teddy bear. It was very sad with so many other parents there, and many who read the name of more than one child who they lost. We are so blessed to have or Hazel and Grant and for the very short time we had Marissa. We think of Marissa daily and when Hazel and Grant accomplish something big or small we often wonder what Marissa would be doing if she were here with us.

DSC_4439-family-at-memorial-service DSC_4416-dove-release

Well, in October, just over a year since Grant & Hazel came home from the NICU, the oxygen finally left our house! The kids have been doing well enough that the doctor put in the order for removal. Part of me was apprehensive about not having that oxygen on which we had relied for so long. At first we were told to keep it in the house in case the kids ever got sick, so letting go felt a little like taking seatbelts out of a car. Hard to believe we were hauling around O2 tanks last year at this time!

Grant and Mommy before eye surgery
Grant and Mommy before eye surgery

The big event was Grant’s eye surgery to correct his esotropia (eye turning in). The muscles in each eye were cut and restitched to align them both in the same general direction. It will still be up to Grant to use them both together, but we are hoping this will help him along. We were most worried about the general anesthesia. Grant was a real trooper and such a good boy and was in a happy mood that morning especially since he couldn’t have anything to eat until after surgery. Everything went well in surgery, and only two muscles needed to be stitched rather than 4. Recovery has gone very well too, with Grant seeming to have minimum discomfort, although it has been challenging to keep him from rubbing his eyes! Having stitches in the eyes really itch. It takes a total of 10 weeks for them to dissolve. It will still take time to see if the surgery ultimately accomplishes the goal and Grant makes the most out of using both eyes together.

Grant healing after eye surgery
Grant healing after eye surgery

Hazel and Grant have become very proficient at sitting. Grant tends to roll and kind of scoot around on his belly and plow his way around on the floor in addition to crawling, and Hazel is crawling but does not seem as adventurous in her travels. They are both very interested in standing with help for balance, and they are practicing taking steps with someone supporting them. When Grant first started taking steps with assistance he was giggling and giggling and giggling – sometimes so hard he’d lose his balance and fall on his bottom and giggle some more. Julie said she laughed along with him so much her tummy hurt!

Halloween 2015: Monkeys, banana and zookeeper.
Halloween 2015: Monkeys, banana and zookeeper.
Hazel and Grant with Santa (2015)
Hazel and Grant with Santa (2015)

The kids continue to grow, although for a period Hazel plateaued. We’ve increased her feeding rate and calories significantly to help her overcome this. We’ve also been able to do some small feedings into her tummy (G-tube) vs. intestine (J-Tube) which she has tolerated well and we hope she continues to do so.

Now that cold and flu season has returned, we also go back into “lockdown mode” to avoid the highly dangerous respiratory illnesses. Because Hazel and Grant were born so early they missed receiving those great antibodies from Julie that all full term babies receive that last trimester. They also did not get the full lung development for a strong respiratory system and have Chronic Lung Disease (BPD), so we still need to be extremely cautious this cold & flu season.

Hazel in pigtails
Hazel in pigtails
Grant with the remote control
Grant with the remote control
Hazel reading a book
Hazel reading a book

new-carseat DSC_3664-hazel-with-big-smile DSC_3919-Hazel-being-held-by-daddy

 

Grant & Hazel - May 16, 2015

Happy First Birthday!

Grant & Hazel - May 16, 2015

Cold and flu season has kept Hazel and Grant very isolated since they came home from the NICU, making it difficult to see some family and friends. They were finally able to visit Great Grandma and Great Grandpa’s house for the first time! Hazel and Grant had a very nice visit full of lots of smiles…and I think Great Grandma and Great Grandpa really enjoyed it too!

Grant with Great Grandpa
Grant with Great Grandpa
Hazel with Great Grandma
Hazel with Great Grandma

Happy Mother’s Day to Julie! Almost a year later, Julie was able to celebrate her very first Mother’s Day. The kids even signed their card to her (with a little help from Daddy).

Hazel signs a mother's day card
Hazel signing mommy’s mother’s day card
Grant woke up to sign a mother's day card
Grant woke up to sign mommy’s mother’s day card

Being able to get out of the house even meant their first time in a restaurant to celebrate Mother’s Day. We ate at a German restaurant and Grant really seemed to enjoy the accordion playing while Hazel slept. At a booth next to ours was a family with a 3-month old baby. As we got to talking, we learned the dad was a grown-up preemie well over 6’ tall. While they start out small, they can grow up to be just as big as the other kids!

Mother's Day brunch - their first time at a restaurant
Mother’s Day brunch – their first time at a restaurant

Marissa’s birthday was May 14th. It was a difficult day for us but also happy. While we know she’s celebrating in Heaven we miss her deeply. Its hard not to wonder what she’d look like today, what her personality would be like and what she would be doing with Hazel and Grant. In memory of her and celebration of her brief life, we had dinner with family and had angel hair pasta for dinner with angel food cake for dessert. Marissa is loved. Marissa is missed. Marissa will forever be remembered by our family.

Remembering Marissa on her birthday
Remembering Marissa on her 1st birthday in Heaven
Donations for the NICU
Donations for the NICU
Donating items for the NICU
Donating items for the NICU

The highlight of our month!!! Hazel and Grant are officially one-year-olds and they are AMAZING!!! Finding out just 3 months after they were born that Hazel and Grant were not expected to survive…THEY DID IT – THEY SURVIVED! Their nurse practitioner that cared for them for their first 3 months while they were in “critical care” started calling Hazel & Grant “The Amazing Anderson’s” because after everything they battled they just kept getting better and better and stronger and stronger. A superhero themed birthday party seemed fitting. So, dressed like superheroes, they were on a mission to help others. With the help of their super friends and super family, they collected over 75 items (and counting) newborn and preemie clothes, blankets, lullaby music, board books and a bouncer. Their hope is that these items will bring comfort to families with babies in the NICU where Hazel and Grant spent the first four months of their lives. While the care they receive there is the best in the world, it doesn’t compare to being at home. Something else was very special for us on their 1st birthday: their Nurse Practitioner, Deb and one of their nurses, Nikki came to celebrate their big special day! Having Hazel and Grant in the NICU for 117 days and 132 days – that was our home for 4 months and ALL the staff became like family for us.  So to have them there on their 1st birthday was GREAT, they too (among many others at Children’s Hospital) were part of helping Hazel and Grant be SUPER AMAZING!!!

Hazel is pleased with her first cupcake for her birthday
Hazel is pleased with her first cupcake for her birthday
Grant dove right in with his first cupcake
Grant dove right in with his first cupcake
Deb (nurse practitioner) with Hazel and Grant
Deb (nurse practitioner) with Hazel and Grant
Nikki (nurse) with Julie, Grant and Hazel
Nikki (nurse) with Julie, Grant and Hazel

On Memorial Day weekend we visited Great Grandpa, who served in Korea, and Great Grandma at the cemetery. It was very rainy so we didn’t spend as much time as we would have liked to, but we did get a photo.

At Great Grandparents' gravesite
At Great Grandparents’ grave site

It has been an amazing first year. There were many times when they were both at death’s door. At one point we were given the option to withdraw all medical treatment. We didn’t give up on them, and they fought on. They are our personal superheroes. They’ll face many battles down the road; but that … is for a different episode!

Super Grant and Super Hazel
Super Grant and Super Hazel
Grant and Hazel on Easter

April in Pictures

Highlights from the month of April in pictures:

 

Hazel and Grant are loving their high chairs for eating cereal, sampling new foods or just playing.

Hazel and Grant in their high chairs
Hazel and Grant in their high chairs

 

They had their first Easter.

Grant and Hazel on Easter
Grant and Hazel on Easter

 

Hazel and Mommy on Easter
Hazel and Mommy on Easter

 

Mommy and Grant on Easter
Mommy and Grant on Easter

 

Hazel on Easter
Hazel on Easter

 

Grant all dressed up on Easter
Grant all dressed up on Easter

 

They got eyeglasses! Grant seems to love looking at everything and has been happier with them.

Grant gets his new eyeglasses
Grant gets his new eyeglasses

 

Hazel doesn’t seem to mind her glasses either…

Hazel in her new eyeglasses
Hazel in her new eyeglasses

 

…or the patch she wears a few hours each day to help strengthen her weaker eye.

Hazel with her eye patch on
Hazel with her eye patch on

 

Hazel also had her hearing checked and passed with flying colors.

Hazel gets her hearing checked
Hazel gets her hearing checked

 

And Grant tried to steal ice cream from Mommy.

Grant steals Mommy's ice cream
Grant steals Mommy’s ice cream

 

It’s so hard to believe we are already coming up on one year since our triplets were born. We finally were able to get out with the kids a couple times (and not just for doctor appointments or emergency room visits) and they love riding in the car and seeing new places in the stroller. Grant prefers to be carried around so he can see everything first hand. We even managed to get out on a couple of dates without the kids!

Julie and Ryan on a lunch date
Julie and Ryan on a lunch date

We’ve learned so much from our kids in this time, and we look forward to everything yet to come. They’ve fought so hard to get here, and are growing and getting stronger each day. They are our little superheroes!

Grant and Hazel celebrate their first St. Patty's Day

Time

Grant and Hazel celebrate their first St. Patty's Day
Grant and Hazel celebrate their first St. Patty’s Day

Time seems to go a little faster these days. Losing an hour with the clock change doesn’t help, as the kids haven’t learned about clocks yet. They have now reached six months adjusted age (10 months chronological) and we are seeing many firsts. We are enjoying Grant being free of oxygen and he also was able to eliminate a medication as part of that.

Our dog Hope has been away for a while to simplify taking care of the kids. She comes to visit from time to time, and so she is still getting used to these miniature people that make a lot of strange noises. Hope would try to communicate with them, making noises of her own. Grant simply looked at her, smiled (he’s been smiling for months now) BUT, he laughed for the first time!!! Since then, Grant still smiles a lot but it is still rare to get him to laugh.

We did manage to get both Hazel and Grant laughing at the same time. It was so much fun – because the two of them were laughing – we laughed along with them! So much fun!

Grant eating cereal for the first time
Grant eating cereal for the first time

We continue working on their eating, and Grant started with rice cereal. He seems to be getting the hang of it, opening his mouth expecting bites and also looks like he is enjoying it. Hazel is doing tastings of rice cereal, but still makes funny faces at the strange tastes in her mouth.

Hazel taste-testing formula thickened with rice cereal
Hazel taste-testing formula thickened with rice cereal

Hazel has always been smaller, and her challenges with the feeding tube have not helped. Due to an internal communication failure of unspecified care providers, the updates from her weigh-ins were never processed into feeding adjustment instructions from the clinic. After rattling a few cages, we finally got the communication issue ironed out and Hazel has been on an improved track. She still has a long way to go, but at least her growth is better monitored.

Grant and Hazel have topped 15 and 12 pounds, respectively.

We continue to work on their tolerance for tummy time and what they can accomplish. Grant can roll from his tummy to his back on his own, and Hazel will roll from her side to her back, or from her tummy with assistance. Being born so prematurely and having faced the challenges of medical attachments (oxygen tubes, feeding tubes) we expected they would be behind, but we hope to see them accelerate in the next over the next six months.

Grant trying on new glasses
Grant trying on new glasses

The kids had their first visit to the pediatric opthamologist. By waving noisy toys around, shining lights in their eyes, and holding prisms and lenses up to their eyes, they were somehow able to determine the current vision of Hazel and Grant. Hazel is far-sighted. As she tries to focus on nearby objects, her right eye tends to turn inward. Prescription glasses should make it easier for her to focus so the eyes can work together at all focal lengths. We will also need to patch her good eye to force her other eye to work and get stronger, but we are told to start with the glasses for a while.

Grant has good vision in his right eye, but is near-sighted in his left eye. The difference in vision is significant enough that, if left untreated, his brain would eventually stop processing the information from his left eye and he would lose vision in that eye. Prescription glasses should also help Grant to retain vision in both eyes. Eventually, as their eyes develop, their vision may improve but the doctor thinks Grant will always need vision correction.

Hazel trying on glasses
Hazel trying on glasses

Finding tiny frames was challenging, let alone finding a place that also accepts our vision plan. Thankfully we were able to find glasses that seem well-made and look good on the kids too. We are excited for when they arrive!

Last year at this time, Julie was confined to bed rest. We missed all of spring and summer, with the exception of the car rides to and from the hospital. As the weather starts to warm, signs of spring emerge, and cold/flu season draws to an end, we are looking forward to getting out as a family and we are eager for Hazel and Grant to start exploring the world beyond our home and doctors offices.

Grant and Hazel in Valentine's Day outfits

Cordless…One Down, One to Go

Hazel and Grant on the floor
Hazel and Grant share the floor

Happy February 31st! Or, as the rest of the world calls it, March 3rd. We try to get an update out once a month at least, but a short month and other circumstances made us miss that goal. Darn.

Hazel and Grant continue to learn about the world around them. We are working harder than ever to give them “tummy time” and try to get them to interact with toys and their environment.

Grant and Hazel in Valentine's Day outfits
Grant and Hazel in Valentine’s Day outfits

We helped them dress up for Valentine’s day, and spent a somewhat quiet evening at home after an active day.

They had their five month NICU follow-up visit (five months after discharge), where we learned areas that we can focus their attention and what to expect in the upcoming months of their development.

Julie kissing Hazel as she rests
Mommy kissing a sleepy Hazel

I got a stomach bug, which seemed to be a contagious variety that many others at work were experiencing. As a precaution, I shipped off for a few days to make sure Julie and the kids would not get sick. Julie soldiered on without me, and did an amazing job. We also got some amazing help from friends and family along the way. Hey, it’s a lot of work!

Grant sitting in a Bumbo
Grant tries out the Bumbo

The best news of the month: Grant took another oximetry test and passed! We just found out today that we can remove the oxygen! We’ll be able to wean him off his diuretic medication over the next couple weeks too. We’ll keep the oxygen in the house through the cold and flu season just in case either one gets sick and needs a little extra air, but we really hope this is the last we’ve seen of oxygen needs. At this point, we have one cordless baby! It might not seem like a big deal to some, but for us it is huge and a great accomplishment for Grant. We are so proud of him for getting off the oxygen two months sooner than originally expected, and it is great to move from room to room without dragging an oxygen tank in a cart behind us.

We are continuing to work on Hazel’s feeding skills with taste-testing and are determined to get her feeding by bottle as soon as she is able. We are so looking forward to the day she no longer needs tube feeding and both kids will be cordless.

Hazel making faces
Babies don’t always smile. Hazel is no exception.
"Hello" Grant.

Happy 2015!

Happy 2015 from Hazel
Happy 2015 from Hazel
Happy 2015 from Grant
Happy 2015 from Grant

Happy new year!

Hazel and Grant continue to grow, learn new things and do more.

Since last time, Grant was able to come down on his oxygen and he has another test coming up very soon! We are hoping he will be off the oxygen by his first birthday. Hazel had her swallow study (click here to view the video). She did well, but not enough to conclude that she would not aspirate when bottle fed, so we continue to take that slowly.

Hazel watches the Xray camera
Hazel watches the Xray camera at her swallow study
Hazel's Milk Mustache
Hazel’s Milk Mustache from her swallow study

Hazel continues to adjust to her feeding tube and has switched formulas in hopes that it will reduce her spitups and vomiting. It does not seem to have a profound effect but is maybe a bit better. The new formula smells like bad Cheetos, so it is probably a good thing she does not taste it.

Everything is extremely busy, so we will just leave you with some photos and videos:

 

Grant and Hazel: Little Monsters
Grant and Hazel: Little Monsters
Grant and Hazel in the crib
Grant and Hazel in the crib
Hazel versus the toy
Hazel versus the toy
"Hello" Grant.
“Hello” Grant.
Hazel and Hope
Hazel and Hope
Hazel and Mommy at feeding clinic
Hazel and Mommy at feeding clinic

 

Hazel and Grant in colorful outfits

Merry Christmas 2014

Hazel and Grant in colorful outfits
Hazel and Grant in colorful outfits

It has certainly been an incredible year. Last year at this time, we were just learning that Julie was pregnant. We didn’t yet know how many we were expecting, and we were elated. We called it our late Christmas present. This year, we were able to celebrate Christmas with our children two children on earth and one in heaven, and we are truly blessed.

Grant with a worried look on is face
Grant with a worried look on is face

Hazel and Grant continue to grow. They recently reached weight milestones of 11 and 13 pounds, respectively.  For seven months old, that is pretty small. For their adjusted age, Hazel is still pretty small and Grant is about average. We expect Hazel will always be on the petite side.

Hazel's Popsicle stick nightmare
Hazel’s Popsicle stick nightmare (J-Tube)

Hazel continues to battle with feeding. After three months, it was time to replace her G-tube. They have already replaced the J-tube portion, but this time it was to get a new “button” part that you see outside of the stomach. The old tube was looking like it was getting contaminated from when the J-tube part came out too much, so the timing seemed good with regard to that as well. We were pretty excited to get rid of the massive tangle of Popsicle stick (tongue depressor), tape, looped tubing and useless ports that comprised the old setup.

Hazel in recovery after getting her new button
Hazel in recovery after getting her new button

So we took her in for her surgery, nervous from our experience the last time she went under general anesthesia. After talking to the doctors, she is taken away by the nurse anesthetists. It is then that I realize we are waiting in Room 13 in the Orange section. I’m not very superstitious, but there is the notion that orange being a foreshadow in film and 13 being an unlucky number. Fortunately, everything went very well, and I even ran into a few familiar faces in the halls.

Ryan holding Grant
Ryan holding Grant

Since surgery, Hazel has been spitting up fairly frequently in large volumes. It is more like vomiting. We have been told to let her adjust to it for a while. I suspect the larger J-tube is not allowing her stomach acids a path to escape her stomach. She also seems to be irritated by the button at the stoma (site where it enters her stomach through the skin). It might be rubbing from minor rotations of the button as the tubes get jostled or gravity pulls down on them. While she may be free of the old Popsicle stick configuration, it seems she has traded for new issues to battle. I just hope she adjusts soon and feels better.

Ryan holding Hazel and Grant
Ryan holding both kids

They both continue to do amazing things. Grant is smiling and cooing up a storm. We wish we knew what he’s saying to us. Sometimes while he’s eating he will pause, look right at one of us and we’ll see a huge grin behind the bottle. When we remove the bottle from his mouth he starts talking in “Grant language” and smiles and smiles. After a few minutes of this he’ll go back to eating. It’s so much fun to see him at this stage. Hazel too is smiling up a storm. She loves when we move her arms around like she’s dancing. She is just starting to coo and we hope that she will catch up to Grant shortly. We are just waiting for one of them to start laughing next. Hazel smiled before Grant…so who will be the 1st to laugh?

Hazel watches the musical merry go round with daddy.
Hazel watches the musical merry go round with daddy.

They are both reaching for things – toys, mobiles, people, etc. Hazel really loves music, especially singing. I find myself making up lyrics when I only know the tune to a song, or just making up songs altogether. It keeps her calm or entertained. Grant is more interested in rhythm – a typical boy. A little beat-boxing soothes him, and sometimes rapping the oxygen tank with the valve wrench gets his attention in a positive way. I joke that someday we might form a band together.

Hazel and Mommy
Hazel and Mommy. Look, no cannula!

The great news is that Hazel passed her oxygen test (barely) and was able to come off the oxygen support right before Christmas! When she didn’t pass last month, Julie said, “maybe she will just in time for Christmas, wouldn’t that be a wonderful gift for us all – especially Hazel.” One less tube is a huge blessing and a big step toward “wireless” babies. Grant recently took his oxygen test. If he passes, he will be able to come down a notch, but not entirely off support yet. We are still waiting on results, but based on the fact that the machine did not alarm all night, we are feeling pretty good about it. We are very proud of them!

Christmas was a lot of fun. They are too young to understand everything about Christmas or even get excited about it in advance, but just the crinkle of wrapping paper, or the sounds and sights of the new toy that were wrapped inside were clearly entertaining to them. We enjoyed spending time as a family and seeing the looks on their faces.

Hazel opening a gift
Hazel opening a gift
Grant opening a gift
Grant opening a gift
Their first Santa experience
Their first Santa experience
Hazel gets a kiss from mommy
Hazel gets a kiss from mommy
Julie holding Grant
Julie holding Grant

Yes, 2014 was a great year in which we welcomed our three children into the world after so many years of waiting for them. We’ve enjoyed getting to know them so far. Yet the year has been full of pain and sorrow as well. So with that, we look forward to 2015. We hope to see Hazel and Grant continue to thrive and grow, become independent of feeding tubes and oxygen, eliminate their medications, and amaze us with the new things they learn and do. We hope everyone will be there to cheer them on and share as their journey continues.

Merry Christmas and Happy New Year to everyone!

Hazel, Grant and Marissa wishing everyone a merry Christmas
Hazel, Grant and Marissa wishing everyone a merry Christmas
Hazel and Grant on Thanksgiving 2014

November Update

Thanksgiving has already come and gone in the blink of an eye. We have so much to be thankful for this year. We have written hundreds of thank you notes and are counting our blessings.

It’s been nearly two months since we last updated the blog. It certainly hasn’t been because nothing has happened! We are still getting used to routines and balancing a very busy life with two babies with medical needs. We have gotten so far behind, we are still in the process of writing thank you notes from the summer!

Hazel ready for the J-Tube conversion.
Hazel ready for the J-Tube conversion.

In our last blog entry, we commented on Hazel’s frequent spitting-up episodes. Even after switching to a continuous feed method, we saw only marginal improvement. At our follow-up visit with the GI doctor, she recommended we convert to a J-tube for feeding. The G-tube she had went directly into her stomach for feeding, where the G-tube is a narrower tube that goes through the stomach and into the small intestine. It actually retrofits inside of the G-tube that was in place, so no sedation or cutting was needed – just some time under the x-ray as the tube was fed in.

Hazel with the J-Tube.
Hazel with the J-Tube.

Hazel was perfectly calm and mostly slept through the whole thing. They nurse commented she was the easiest baby she had seen for this. Since the J-Tube conversion, the number of spit-up episodes greatly decreased, and the volume each time was significantly reduced as well. The tube is bit more frustrating because it can get kinked and clogged more easily, and it is taped to a popsicle stick as if it was some amateur’s duct tape job. It is hard to believe with all the advanced medicine used during the kids’ NICU stay that this was the solution. It gets in the way ALL THE TIME.

Hazel in the ER for a J-Tube fix.
Hazel in the ER for a J-Tube fix.

About five weeks later, Hazel started spitting up large amounts frequently again. She was also spitting up formula and vitamins, which we would expect to have bypassed her stomach with the J-Tube. After inspecting, it looked like the J-tube had slipped out quite a bit, so Julie made a trip into the ER with Hazel. Eight hours later, her J-tube had been replaced (with yet another taped popsicle stick). Her tube had come out about 4 ½ inches, so food was going into her stomach instead of small intestine.

Hope greets Hazel and Grant for the first time.
Hope greets Hazel and Grant for the first time.

The kids got to meet their dog, Hope! Hope has been away with family since Julie went on bed rest, and we have missed her dearly. With the oxygen tubes and Hazel’s feeding tube, we are concerned she might either accidentally snag a tube or proactively try to chew on it, and we haven’t had much time to watch over her and the kids. The introduction went really well. Hope was really interested in both kids, but didn’t seem to be pushy to jump on them. We really look forward to when the kids are older and can play with her.

Grant prepped for his laser surgery.
Grant prepped for his laser surgery.

Grant’s ROP began to progress a bit, and he had to have laser eye surgery to cut back the blood vessels that were growing irregularly. The eye doctor said the surgery was successful, and at his first follow-up visit, things are looking good. He is still not totally in the clear and will need regular follow-up until he is 70 weeks adjusted age.

Hazel looking cute as usual.
Hazel looking cute as usual.

Hazel’s eyes have developed normally, and she is no longer at risk for ROP! She will still need to see a pediatric opthomologist to screen other eye conditions, but we are happy we at least don’t have to worry about ROP.

Hazel and Grant dressed up for Halloween!

Hazel and Grant dressed up for Halloween - Part 1
Hazel and Grant dressed up for Halloween – Part 1
Hazel and Grant dressed up for Halloween - Part 2
Hazel and Grant dressed up for Halloween – Part 2
Ryan camping out for Hazel's oximetry study.
Ryan camping out for Hazel’s oximetry study.

Hazel had an oximetry study to see if we could take her off the oxygen. I was so hopeful she would pass her test. Having one less tube connected to her – and not having to haul the tank around when we move her – would make things more comfortable for her and so much easier for us. After staying up all night to record each time the oximetry alarm sounded (it was 47 times) she unfortunately did not pass and needs to stay on the oxygen and retest in December.

Hazel and Grant on Thanksgiving 2014
Hazel and Grant on Thanksgiving 2014

Hazel and Grant had their first Thanksgiving and got to go on their first trip that was not a doctor or ER visit! They got to go to Grandma’s house and Auntie’s house. Packing up all the baby gear, plus the oxygen tanks, IV pole and feeding equipment is a real chore, but it is great to get out of the house for a bit.

Grant with a sly smile.
Grant with a sly smile.

Hazel and Grant are starting to smile more. We can almost predictably get Hazel to smile by touching her nose like a button.

Grant is getting physical therapy for his foot. His left leg muscles are very tense, and his left foot doesn’t seem to have as good of circulation as the right foot, so we want to keep it loose and limber. We are hoping this doesn’t affect his strength and balance later when he tries to walk.

 

Those are the big events for the month. Per requests, here are some “extra” photos of the kids:

Hazel and Grant in the crib.
Hazel and Grant in the crib.
Grant's reaction to the shutter sound of the phone's camera.
Grant’s reaction to the shutter sound of the phone’s camera.
Hazel and Grant in their car carriers.
Hazel and Grant in their car carriers.

 

Living room game time.

Finally All Together at Home

home-finally-DSC_1256
Finally home – oxygen tanks and all.

It felt like this day would never come: after 132 days Hazel came home on Thursday, September 25th! We have finally realized the dream of being together as a family and it’s truly amazing!

Hazel-heading-to-surgery-DSC_1094
Hazel heads up for yet another surgery – this time to get a G-tube for her feedings.

The road home took Hazel a little bit longer because of her feeding. When we tried bottle feeding her while she was in the NICU, she silently aspirated (meaning she doesn’t show any signs of choking). For a while, she was sick for unknown reasons until process of elimination and a swallow study revealed it was her silent aspiration. The speech therapists tried working with her to develop the suck/swallow/breathe coordination and made a little progress, but were not able to get her cleared to go home with bottle feeding. Hazel needed surgery to place a G-tube for feeding directly into her stomach. Rather than being inserted through the nose, as they do it in the NICU, this is a semi-permanent tube that literally sticks out of her stomach.

Everyone came to pick up Hazel on her discharge day.
Everyone came to pick up Hazel on her discharge day.

On September 15th, the surgery itself went well for Hazel. However, not long after being brought back from the OR, Hazel was extubated. I was out of the room getting lunch when this happened. As I came back to the room, Julie waved me to come over to her quickly. With tears and the look of fear in her eyes, she explained that Hazel was not taking her own breaths after being removed from the ventilator. I held Julie close as the staff tried to rouse Hazel. Eventually she began to breathe and her oxygen levels came back.

Afterwards, Julie told me more of her perspective, as she watched Hazel turn pale, then blue and purple and limp like a rag doll. Her oxygen saturation had plummeted. We normally get concerned when it gets below 80% and panicky when it gets below 70%. At one point Julie saw 18% on the monitor. She said that she was able to hear my heart pounding in my chest after I had gotten in the room and realized what was going on – something I never noticed or don’t remember.

We stopped to visit with some of Julie's antepartum staff and introduce them to Hazel and Grant.
We stopped to visit with some of Julie’s antepartum staff and introduce them to Hazel and Grant.

The staff reassured us she was okay, and some preemies that have been intubated for a long time and are sleepy coming out of anesthesia are a little reluctant to start breathing again. After a few hours she was back to the very minimum amount of oxygen needs and doing well with breathing again. We were glad to have that episode behind us and have Hazel back.

Ready to roll!
Ready to roll!

So what is it like having both kids home? Well, it was nice to get accustomed to taking care of one baby when Grant came home. Getting used to two kids at the same time with medical needs is completely different. It takes planning to move kids around the house. They have tubes and oxygen tanks, and Hazel has a feeding tube with a pump on an IV pole. We have to be sure we are not tripping over all the tubing, that all parts are moving together, and try to do it when the other kid doesn’t need attention.

Hazel’s reflux is so bad, she sometimes vomits large amounts that can interfere with her breathing which is really scary. Less than 24 hours of being discharged from the hospital we switched her feeding from meal-like doses during the day to a 24/7 continuous drip and she seems to do better at keeping food down. Eventually she should outgrow this as her stomach muscles develop more and her esophagus gets longer.

Julie gets a little snuggle time with Grant - maybe a nap too.
Julie gets a little snuggle time with Grant – maybe a nap too.

Sleep is rare, as I’m sure it is with most new parents. However, we have a higher probability of losing sleep based on the number of kids with their medical needs and the equipment alarms. The oximeter alarm sounds like that really awful $5 alarm clock buzzer, especially through the small speaker on the baby monitor. The feeding pump has a beeping alarm like a small electronic kitchen timer. For some reason it does not pick up well on the baby monitor’s microphone so we overslept that a couple times. We now set alarms for the nighttime food refills. Formula only lasts 4 hours without refrigeration, so that is our schedule to wake up and refill, guaranteeing no more than a few hours of sleep at a time – assuming nobody cries to wake us up.

Just hanging out.
First time hanging out at home.

We already had a trip to the emergency room after noticing some green “stuff” around Hazel’s G-tube site. We were told to look for stuff like this as a sign of infection so we called her pediatrician’s 24/7 care line. At their recommendation, we packed up and headed in to the hospital ER in the wee hours of the night. Fortunately this was a false alarm, and the doctors were not concerned that it was infection.

Living room game time.
Living room game time.

So it might sound like I am complaining, but that’s just self-pity. I really can’t wait for the days when we can just pick them up and move them around without being attached to anything or worrying about causing them to vomit and choke. In the meantime, we still enjoy them so much. We are in wonder and amazement at our two little ones and we look forward to who they will become.

Grant on high-flow oxygen

Three Months

Hazel and Grant are now three months old! A lot has happened since our last update (Cribs). In general order of occurrence:


 

We found this bottle of Coke – remembering our angel Marissa.

Share a Coke with Marissa.
Share a Coke with Marissa.

 

Hazel moved from the ventilator to CPAP first. The staff predicted she would fail her first extubation. She proved them wrong.

Hazel on CPAP
Hazel on CPAP

 

Grant’s eye exam showed ROP (retinopathy of prematurity) Stage 3 with PLUS disease. ROP with PLUS is a potentially blinding condition that affects preemies. Higher risk factors include extreme prematurity, low birth weight, infections, and high oxygen support – all risk factors our kids have. Grant got shots of Avastin in his eyes to try to correct this. As of his most recent exam, the shots have been effective and his condition has regressed.

Grant getting prepped for eye shots.
Grant getting prepped for eye shots.

 

Both babies stopped caffeine and pain medications. Hazel switched to high-flow oxygen. She was not a big fan of the CPAP mask or prongs, and is much more comfortable now.

Hazel on high-flow oxygen.
Hazel on high-flow oxygen.

 

Grant was extubated to CPAP. This was his third time, but the first time where he had proper preparation with steroids and good stats at the get-go.

Grant on CPAP
Grant on CPAP

 

In a routine chest X-ray, the care team found a rib fracture on Grant that is healing. It is unknown when it was broken, but was not surprising given their tiny bones and the fact that the medications sometimes decreases their calcium and other important nutrients.
Our nurse practitioner at one point started calling our kids “The Boring Andersons” as they started to stabilize (boring is good when you are in the NICU). More recently, she said they should be upgraded to “The Amazing Andersons” because of all the great progress they had made.

Hazel sleeping comfortably
Hazel sleeping comfortably

 

Grant followed his sister in the switch to high-flow oxygen.

Grant on high-flow oxygen
Grant on high-flow oxygen

 

Grandmas held babies!

Grandmas got a chance to hold!
Grandmas got a chance to hold!

 

We held both babies at the same time! It became very apparent the size difference between Hazel and Grant.

The first time holding Hazel and Grant simultaneously.
The first time holding Hazel and Grant simultaneously.

 

Auntie held Grant!

"Favorite Auntie" holds Grant
“Favorite Auntie” holds Grant

 

Our best friends held babies!

friends-holding-babies


 

They were both switched from “Critical Care” to the “Intermediate Care” team. Instead of focusing on trying to make very sick babies well, they are now focused on getting babies ready to get home. (There really isn’t a picture for this)
Moving Day! An area of the NICU was closed down due to “low census.” The kids were moved from the double-room “apartment” to two adjoining rooms just down the hall. After 90 days in the same room, it felt a little bit like home. (Five days later, census grew and we have moved back into our old room!)

Julie moving Hazel to a different room
Julie moving Hazel to a different room

 

Auntie held Hazel.

"Favorite Auntie" holds Hazel
“Favorite Auntie” holds Hazel

 

Hazel and Grant have come a long way since the “Cribs” update. At that point Hazel weighed 3lbs 1oz, Grant weighed 4lbs 6oz. Less than four weeks later, Hazel now weighs 4lbs 6 oz, Grant weighs 6lbs 2oz. It’s even more amazing to think that they started so small. Fortunately, we also started out by measuring in “feet.”

Hazel's growth, from two weeks old (left) to 12 weeks old (right).
Hazel’s growth, from two weeks old (left) to 12 weeks old (right).

…Hazel was 1LB  at birth – the same as a pack of butter.

One pound of butter.
One pound of butter. This is the equivalent of what Hazel weighed at birth.

…Grant was 1lb 9oz at birth – a little less than this pack of applesauce cups (including the packaging weight).

Package of applesauce.
Including packaging weight, 1lb 9.75oz – slightly more than Grant’s birth weight of 1lb 9oz.

 

Coke, butter, applesauce…seems like food is on our mind. Speaking of which, next week they will introduce Hazel to bottle feeding. There are challenges associated with the coordination of swallowing and breathing at the same time, especially for babies who have been intubated for so long. Grant has to come down on his oxygen flow before he can try, but we’re hoping he is not far behind.