We 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.

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.

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.

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).

 

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.

 

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.

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?

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.

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!

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.

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!

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.

 

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!

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).

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!

Marissa’s birthday was May 14^th. 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.

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!!!

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.

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!

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.

 

They had their first Easter.

 

 

 

 

 

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

 

Hazel doesn’t seem to mind her glasses either…

 

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

 

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

 

And Grant tried to steal ice cream from Mommy.

 

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!

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!

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!

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 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.

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.

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.

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 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:

 

 

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.

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 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.

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.

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.

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?

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.

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.

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!

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!

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 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.

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.

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’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’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 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 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.

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

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

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

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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.

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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.

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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.

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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.

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

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Grandmas held babies!

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

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Auntie held Grant!

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Our best friends held babies!

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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!)

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Auntie held Hazel.

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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.”

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

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

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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.