Saturday, September 29, 2012

Baby banshee!

Maisie has been doing awesome at home. When she left the hospital, she was 5lbs 5oz. At her doctor's appointment Wednesday, just 10 days post discharge, she weighed in at an impressive 6lbs 2oz!

She has also turned into a baby banshee. Maisie does not cry, doesn't fuss, and typically just squeaks her way through the day. She's very low key. However, a few days ago she started doing a high pitched squeal at the top of her lungs. It is SO incredibly loud and I'm sure she's waking up the neighborhood. It's her way of saying "FEED ME, NOW! FEED ME, MORE!" or, "I'M WET! I DIDN'T CARE BEFORE BUT I CARE NOW!"

Maisie is definitely in charge. I wonder how it will be when we get James home. His faint little cry has nothing on her shrill bloody murder banshee squeals.
***

In James news, he is a totally different baby. He's back on comfort flow oxygen and doing fantastic. He and Maisie act so much alike that it is startling at times. You can tell he feels so much better without pressure from fluid in his ventricles, his hernias and ostomies, and the constant irritation/restriction from the vent tubes.

The next big thing for James is bottle feeding. He is almost off TPN or his IV nutrition, and when they wean his oxygen settings again we will likely do a swallow study to find out how to move forward to help James succeed. You can tell James is ready for this challenge - he has been rooting for weeks and if he could eat his pacifier, he would have done it a while ago.

Tuesday, September 25, 2012

Forty weeks is bittersweet

Today is our final due date, the one we were given at the very beginning before we even knew we were having twins. September 25th. Today is bittersweet in so many ways, but mostly it marks that milestone that I was three months early for.

The babies will be three months old tomorrow. Before I delivered, when we met with the neonatologist at Swedish, they told us to expect to take the babies home around our due date. Maisie has accomplished that without many major issues, but poor baby James is still sitting in the NICU and will be there for several more weeks. If I would have made it closer to my due date, the babies may not have had to struggle as much as they have or deal with so many adversities.

I am so proud of the people they are. They are stronger and more determined than I will ever be. The challenges they have endured and continue to face seem insurmountable, yet they keep going and continue to show love, happiness, and attitude to everyone they meet.
***

Yesterday James was successfully extubated to the high flow nasal cannula. He skipped CPAP all together and today was weaned down to 3% flow and 23% oxygen. It was so unbelievable to hold him without assistance and without all the ventilation tubes! When James gets to 2% flow, we can begin bottle feeding. Things seemed to be looking up for our little dragon- he was breathing on his own, eating, sucking on his pacifier, and pooping in his diaper!

And then we learned that James has hydrocephalus and that he will need emergency neurosurgery tomorrow to reduce cerebral spinal fluid pressure in his brain. Because of his recent abdominal surgeries, he will have a neurosurgeon place a temporary port to access and drain fluid from the ventricles. In a few weeks, he will have the permanent shunt placed once his abdomen is healed more from the surgeries last week. James will be reintubated due to general anesthesia.

Forty weeks is bittersweet.

Sunday, September 23, 2012

Rockin' Room

It's safe to say the little dragons don't really have a nursery. In fact, we didn't want anything to do with pale pinks and blues, pastels, or baby themed stuff. The little dragons won't be babies forever, and for now they will be sharing a room in our current house.

We felt really strongly about incorporating as much about our lives as we could into the decoration of the babies' room. For example:

- two of our guitars are decoration, a blue Ibanez of Jimmy's and my electric guitar, a silver Hohner.
- our theme colors were bright blue (wedding color), lime green (coincidentally the color of the water bottle that helped give James fluid during our pregnancy), black and grey.
- my old lava lamp is here for decoration only.
- we received antique dressers that were once my grandmother's; my mom and Aunt Joanna spent weeks refinishing them to match the cribs.
- there are two beautiful quilts handmade by my Aunt Debbie, each with a unique pattern for the babies featuring guitars and circles.
- Auntie Ca worked on letters for the baby names, with the help of Grandma Margie, Grandpa Doug, and Michelle. They have patterns that match the room theme and colors.
- The cribs are 4-way convertible cribs that our family and friends purchased for us. They will last years and years, and we are so thankful for the generosity of those closest to us.
- The blue jean canister / book ends were given to us at my work shower by my colleague and friend Linda. She did so much to organize that shower and gave us these wonderful bath/care sets, I hated to take them apart. But, my sister organized the room for me while we were with the little dragons. She decided they would make great book ends and be the perfect place for those tiny little baby socks.

There are so many people who came together to make this Rockin' Room possible. You know who you are. We all really appreciate your kindness, time, generosity, workmanship, organizational skills, and thoughtfulness.










Friday, September 21, 2012

Five pounder

James is officially a five pound baby! It seems like it has taken him forever to get to this point, especially with all of the challenges he's had with the bowel perforation, ileostomy, stomas, metabolic syndrome, dumping, and the struggle to find a good balance of nutrition. In fact, James's weight has taken off in the last few weeks - he gained a pound in just 12 days. This will really help him get off the ventilator. In fact, his oxygen requirements are currently at room air!

***
We don't like to have emergencies in the NICU but on Tuesday night into Wednesday morning, James was having trouble keeping up his IV's. He sustained a burn on his foot from an IV that infiltrated, and was in desperate need of another option. Our primary nurses had been pushing for a Broviac line, which would have been in addition to the surgery on Tuesday but for some reason the decision was made against it. By Wednesday morning, this was James's only option for IV fluids and nutrition for the next few weeks. James went in for an emergency surgery to have a Broviac line placed on Wednesday afternoon; the surgery was a success and he has recovered well.

***
In Maisie news, she is eating like a champ and sleeping well. We have a piano play mat that she adores, which sings songs back to her like "Little Bunny Foo Foo". We are trying not to go too crazy with the repetitive nature of these songs.

Maisie had her final eye exam today and doesn't have to follow up until six months from now. She is clear of Retinopathy of Prematurity!

Another interesting thing that Maisie has been diagnosed with, per say, is something called macroglossia. I had to look it up when I read it on her discharge papers. The definition is "congenitally enlarged tongue", and no one at PSL ever mentioned this to us but we are aware that Maisie has a very long tongue. She might very well turn out to be a rock and roll star! Otherwise, unless it starts impacting her ability to eat or breathe we are just going to wait for Maisie to grow into her tongue.

Wednesday, September 19, 2012

So busy!

Yes, Maisie came home Monday afternoon. Since then, we've been running around like crazy with everything that's been on the schedule. We'll give you a rundown.

Monday 09/17
12:00pm - discharged
12:15pm - visited James
1:30pm - drove home
2:30pm - bottle & diaper
6:00pm - bottle & diaper, change into Bronco outfit
7:00pm - visit from Grandparents Thatcher
7:00pm - wait for Apria Oxygen people
8:00 - "watch" Bronco game aka nap
9:30pm - bottle & diaper, change bronco outfit that was spit up on
11:30pm - No sight of Apria, so I call and ask them to come tomorrow night
Tuesday 09/18
1:30am - bottle & diaper
5:45am - bottle & diaper
6:30am - leave for PSL
7:15am - visit James & Anesthesiologist
7:45am - leave with James for surgery
8:00am - James's surgery postponed due to surgeon being in a meeting, return to NICU
8:15am - take Maisie to waiting room with Grandparents while Jimmy and I meet with Surgeon
8:30am - James goes in for surgery
9:30am - diaper & bottle
10:45am - James is out of surgery and it is a success
11:15am - Jimmy and I visit James while Maisie cuddles with Grandparents
12:45pm - Leave PSL
1:30pm - bottle & diaper
2:30pm - Apria Pulse Oximeter Test (passed with flying colors!)
3:30pm - Leave for 1st Pediatrician appointment
4:00-5:00pm - Visit with Dr. Jim
5:30pm - bottle and diaper
6:00pm - Apria Oxygen delivery
6:30pm - group nap
8:00pm - call James
8:10pm - call Grandpa Doug and wish Happy Birthday
9:30pm - bottle & diaper
***

Today we have nothing on the schedule except for eating, diaper changes, bathing, and visiting baby James. It's a welcome relief.

James is doing well following his surgery in which they reconnected his intestines, examined his bowels, repaired three hernias and performed a circumcision. He is on lower vent settings now then he was just prior to the surgery. We are determined for a positive outcome for James, as he is such a strong little dragon who has been through so much already. Keep sending your well wishes his way!



Monday, September 17, 2012

One down, one to go

Maisie is officially discharged from Presbyterian / St. Luke's! She is sleeping and squeaking in our living room at this very moment. We are so thrilled to have her home, and so proud of all the progress she has made.

On our way out the door of PSL, we took Maisie on a detour to see twin brother James for the first time in several weeks. Jimmy and I got the most amazing gift as we both were able to hold our little dragons together. It's the first time they've been held together since they left the womb 83 days ago.

***
Tomorrow is a big day: James has his reanostomosis surgery first thing in the morning along with several hernia repairs. Following the surgery his intestines will have to relearn how to work after not being fully utilized for weeks on end. And, we are hopeful that James will get off the vent once and for all. He's got a lot of work ahead- but James has conquered so much already. We know he will do wonderfully tomorrow.

PS: James is now 4lbs 11oz! That's 3 pounds bigger than his birth weight. Way to go James!

Friday, September 14, 2012

Rooming in

Tonight we are staying the night with Maisie at PSL. She is on the launching pad to go home, if she continues to behave. Earlier this week Maisie was set to leave on Saturday but a bradycardia episode set her back to a Monday discharge. Tonight she weighed in at 5lbs 4.5oz and is stable on her full bottle feeds.

James is doing well, growing like a weed and getting in lots of bag changes before his surgery on Tuesday. He is getting lots of "big boy" accessories in his crib, like a boppy pillow to sit up in and a mobile. He loves both of them. James weighed in at 4lbs 9oz tonight!

In addition to our rooming in experience this weekend, we will be busy trying to get ready with last minute preparations for Maisie to come home. Also, we will have Auntie Ca and Cousin Marri coming to stay with us for the next few weeks from Washington, and our family baby shower on Sunday. It's going to be exciting around here!

Tuesday, September 11, 2012

News Flash

Extra! Extra! Read all about it!

Today was heavy on the news. Fitting, since today was our official twin due date. The little dragons are well on their way, gaining weight and getting approvals from their doctors.

Let's start with Baby A, Maisie. She's weighing in at just over 5lbs and taking all of her feeds by bottle. Maisie's on the official "Brady Watch" and if she goes all week without one, she will be HOME on Saturday!

Baby B, James, has some pretty fantastic news himself. He weighs over 4lbs now! He is so stable that Dr Rothenberg, the head of the Minimally Invasive Surgery Department at the Rocky Mountain Hospital for Children, scheduled James for his reanastomosis on Tuesday morning at 7:30. We are thrilled that this will be taking place because it means James will have better growth following the surgery. Growth equals lung tissue, and lung tissue means coming home. It's about time! They'll also take care of the bundle of hernias that James has acquired since Dr Rothenberg did the ileostomy surgery nearly 10 weeks ago.

We have a lot to do to get ready; our time in our quiet and empty home is dwindling. These little dragons are on the move!

Saturday, September 8, 2012

A community loves these little dragons

Today the staff and residents of Harvard Square threw a baby shower for James and Maisie. We are so humbled by the overwhelming love and support that everyone showed our family today.

Jimmy and I have a lot of thank you notes to get working on. We feel very fortunate that our little dragons have so many amazing people supporting and cheering them on.

To our friends at Harvard Square: thank you from the bottom of our hearts. Erin, Jimmy, Maisie, & James

Wednesday, September 5, 2012

A + 3, B + 2

Every day at the 8pm and 9pm cares the most exciting thing is the weigh in. We care a lot about proper nutrition, feeding, and weight gain because this will get us home sooner.

Each baby has their own prescribed diet, and has tried many different variations along the way. Being that they were small to begin with, in the bottom 3rd percentile for twins at their gestational age, they fell off the charts pretty quickly due to surgeries and different food intolerances.

Maisie was well ahead of James with eating. Several weeks back they were working on all sorts of concoctions to help her gain weight, and finally they've accomplished their goal. Maisie is currently on a lower calorie formula and taking 3-4 bottles a day. The rest is gavaged through a feeding tube until she can handle more bottle feedings.

James is still on a half and half mix of food and TPN, or IV nutrition. Because of his ileostomy surgery, he has a difficult time absorbing nutrients and has to get potassium and sodium supplements in addition to the IV. James is currently on a high protein formula with the hopes that he will bulk up quickly. The goal is to get James to around 4lb 8oz before they can do the next surgery. Because of the ventilator, his feeds are all gavaged through the feeding tube.

***
Last night, we are proud to announce that the little dragons weighed in at:

Maisie: 4lb 11oz
James: 3lb 11oz

Thus the title of our post today: baby A has gained 3 pounds and baby B has gained 2 pounds by 10 weeks old. Way to go little dragons!

Saturday, September 1, 2012

Two kilo cupcake

Maisie hit the two kilo mark last night! She weighs 4lb 8oz. We are super proud of our little dragon. She is doing very well on bottle feeding, and they are talking about changing her feeds to every four hours. We are just another step closer to going home. Now, if we could only get her off the high flow oxygen again...

James was doing great on the SiPAP until 3pm, when his airway became swollen and he was struggling to breathe. To make a long story short, he is back in the Level III NICU and back on the ventilator. We aren't sure what the next step is, but we know James is in good hands. He did great for several days off the vent, and hopefully this is an indication of more success to come.

***
I love shopping at Kohl's or King Soopers, when at the end of your receipt you get a print out that says "You saved $29.89 off your total purchase today for using your <insert store loyalty card>". I have been keeping tabs on our health insurance site, and so far they've managed to save us nearly $700,000 off the cost of services for these little dragons. I've said it before, and I'll say it again: thank goodness for insurance. We are so thankful that my employer, Leisure Care, kept my job past what was legally required by the Family Medical Leave Act so that we were able to maintain our amazing insurance benefits.

We have been fortunate to only have to pay a portion of our share of the expenses ($3,400 out the the $16,000+) relating to this situation, which is my out of pocket maximum. The rest will be covered by Medicaid due to the little dragon's low birth weight. It's still a lot of money, especially considering we've been living on one income for most of the year - but had we been without insurance we would definitely be in the poor house.

By the time the babies get home, I'm guessing they'll be million dollar dragons.