Tuesday, October 30, 2012

Wild ones

We've had two successful nights and days at home. It's a bit crazier than we imagined, but only because we didn't have any expectations of how it would be.

When Maisie came home it was a piece of cake. It took her a bit to get things figured out, like how to scream like a banshee for our attention and that she could sleep all night. Maisie loves to sleep. But aside from that, it really didn't take Maisie long to find her own rhythm and she was very calm for the most part. And since then, every time we have visited James she has slept and been the model baby the entire time.

Fast forward to when James came home. Our four month old former resident of the NICU at PSL is used to noise, lights, dinging, and chaos. He's had a strict routine: every four hours they stick a thermometer under his armpit, change his diaper (several times) and feed him. He is like clockwork still. We just pulled him out of the only world he's ever known.

So, what have the past two days been like, do you ask? The little dragons work as a team: crying, fussing, demanding attention and food, and more. Their squeals and squawks are like a well choreographed chorus. They are jealous of one another and curious.

It's been an exhausting, sleep deprived, piano play mat sharing, classical guitar station on Pandora couple of days. We are thankful that we "borrowed" Freddy the Frog aka James's cuddly from the NICU because none of us would be getting any sleep whatsoever.

***
We had our appointments with Dr Jim yesterday and today and the little dragons are doing great. Maisie weighs 7lbs 8oz and James 6lbs 11oz. We definitely found a great doctor over at Greenwood Pediatrics. Today they gave us a ton of Similac Neosure that was to expire in a few months - saving us hundreds of dollars in feeding costs for the babies. We are so thankful.

***
In other news, we are getting dangerously close to our 2 million dollar cap on our insurance. We will see when the final bill for James comes in for PSL. This could be very bad news for the rest of 2012 if it happens. Luckily we aren't far away from 2013.

On a totally different note, we have 11,500+ views for this blog! This is entirely from word of mouth. We have had readers in 15+ different countries since June! Thanks to everyone who keeps up with the little dragons and wishes them well.

Sunday, October 28, 2012

Best Day Ever

After 124 days in the NICU - our family is finally together under one roof. We have so much to celebrate, so much to be thankful for.

Lots of people thought we would never make it to this point, and we are proud to have proven them wrong. People are not statistics - they are capable of accomplishing amazing and seemingly insurmountable challenges.

Determination is a powerful thing.

Here's to the next big adventure!

Friday, October 26, 2012

Fast forward four months

On June 26th it was over one hundred degrees and we finally got an afternoon of rain. On October 26th, we've had our first official snowfall and are fast approaching the holidays. A little over four months ago, I said goodbye to my bird-feeder and living room window view that I'd been stuck watching for over two months and moved into Swedish Medical Center.

Now, the leaves on our trusty front yard trees have all dropped and those birds are heading south for the winter. Once upon a time I had to put my hectic and busy life on hold for the sake of keeping our babies inside, reduced to watching the pollen collect on the pine tree branches and keeping up with way too much TLC on TV. Since June 26th, our lives have been frenetically busy with recovering, working full time, and of course, caring for our little dragons. I have not a minute of free time to watch the trees, birds, or TLC. What a difference a few months makes.

***
This whole experience has been eye opening, challenging, frustrating, wonderful, beautiful, rewarding. Our children are simply amazing. We've made friendships and met people that I will feel lost without - as I've spent the last four months with them and they've spent the last four months putting up with me. And truth be told, I can be a huge pain in the you know what - but so can my children - so we have to stick together.

With an end in sight to this whole NICU experience I wouldn't change anything for the world. I'm so happy with the care we received, especially from our primary nurses M, J, and H. They have kept us and our families sane when this crazy train seemed to be going off the tracks. They are the ones who made the most impact on our little dragons; set them up for success, fought for them and loved them like their own children.

Someday the NICU will be a distant memory... someday very soon. I'm not going to say when because I don't want to jinx the situation. However, as soon as baby James is in his car seat and broken out of jail PSL you can be certain that you all will be the first to know!


Wednesday, October 24, 2012

Surgery #7

At 10am James went into surgery at the Rocky Mountain Hospital for Children at PSL for a VP shunt conversion and possible hernia repair. Luckily the entire operation went smoothly and they were able to do both things without issue. The general surgeon repaired a large hernia along with some of the abdominal wall that had been compromised from his reanostomosis.

Shortly after surgery he extubated and was back to his feisty self, though he was extremely hungry. James visited with the Grandparents and sister Maisie, then was graduated to the 7th floor. Though he lost his window spot in his old room, we don't plan on James being there long.

***
Maisie slept most of the day while we waited for James to go into and get out of surgery. She was an awesome little dragon. The highlight of her day was going to rounds with the doctors. Maisie absolutely loved the attention she received from all of her friends in level III, and she finally got to participate in rounds like James had been doing weeks ago. The staff all commented on her calm demeanor, her big blue eyes, her smile, and of course her very cute tongue.

Monday, October 22, 2012

On second thought...

Let's get a shunt. And another hernia repaired. And let's stay at PSL another week.

I think that will be better than coming back for surgery in a couple months, don't you?

Everything happens for a reason, and in its own time - especially with baby James.

Thursday, October 18, 2012

Waiting

James hasn't been "tapped" since Sunday. His head size and hydrocephalus or ventriculomegaly is stable as of now and so we are not currently looking at a shunt. We are so thankful for James's progress in this respect, and we hope his good fortune continues.

Today James got a bath with the help of Grandpa Doug and weaned down to low flow oxygen. He's currently on 1/8th of a liter and is sat'ing high, so he may go lower. The words "James" and "discharge" have been said in a sentence on more than one occasion by more than one doctor. It may be sooner than later, mainly depending on the weaning of oxygen and the continued stability of James's head.

Meanwhile, James is just sitting tight at 6lb 6.5oz. He's bored silly and can't wait to break free from jail PSL to join Maisie at home. Luckily he has a great view from his room!

Monday, October 15, 2012

To shunt, or not to shunt, that is the question:

For the first time in the history of the little dragons, we had a surgery scheduled a week out. Don't get me wrong, we love the last minute fire alarms that typically happen when a surgery has to take place! They scheduled the 16th for James to have a shunt conversion, and we were all systems go... until this weekend, that is.

James suddenly stopped needing to be "tapped" for fluid and went 48 hours between taps. They started taking out less and less. Today after his head ultrasound, the neurosurgeon decided to cancel the surgery and watch James for a few more days. He may not need a shunt conversion after all. He may be one of those miracle babies whose villi starts reabsorbing the fluid and/or whose body stops producing excess cerebral spinal fluid. James might not need a shunt now, but he may need one later. We are in watch and wait mode.

***
In growth news, Maisie weighs 7lbs 2oz and James weighs 6lbs 3oz! They both are eating well and growing well, though James has some catching up to do.

***
I am asked about a hundred times a day how the babies are doing at home, if James is home yet, or when James is coming home. Perhaps its because I work with seniors and some of them have dementia. Besides that, everyone I know is so excited to hear about the little dragons and wants to know how they are doing every day. We are so thankful for all the thoughts, well wishes, and compassion we have seen from friends all over.

With all the extenuating circumstances, it's difficult to explain why James is still in the hospital and why he can't be home with us right now. James has accomplished so much, and he is almost there. Believe me, we are so ready to have our little dragon home with us!

So, what does James need to do to be able to come home?
1. Be on low flow oxygen. He's currently working on weaning but as of the moment he's still on high flow.
2. Have a plan with regards to the VAD / shunt or no shunt. We'd prefer not to have to come back to the hospital once we leave.
3. Have five days without a bradycardia episode. He's been doing awesome with this, so we hope he keeps it up with the above situation.
4. Car seat test, hearing test, continued eye exam, etc. These are all standard discharge plans.
5. Continue taking all feeds by bottle. He's doing awesome with this!
6. Stay healthy. We are heading into RSV season with two micro-preemies, one of which has very compromised lungs. Hospitals in general are not the healthiest of places. This is perhaps the most important key to James coming home.

Thursday, October 11, 2012

Stats version 2.0

•Days since pPROM: 211
•Days since delivery: 107
•Total days Maisie was in NICU: 83
•Total days James has been in NICU: 107 and counting
•Our goal: James to join Maisie at home by Halloween so they can be Chipotle Burritos (and we can get a free dinner)
•# of extubations: I've lost count
•# of blood transfusions: I've lost count
•# of surgeries: 7 (one for Maisie, six for James, and he has one more next week)
•Total billed to Premera Blue Cross: $1.6 million
•Total paid by Premera as of 10/12/12: $362,000
•Total paid by our family: $3400, my out of pocket maximum (thank you Premera and Medicaid!)
•Current cost of one month's supply of Similac Neosure for Maisie: $125
•Projected cost of Neosure for Maisie and James: $300-$400 per month
•Number of hours Maisie sleeps at night: 5-7 hours
•Number of real baths James has had in his lifetime: zero
•Maisie has: dark hair, blue eyes, olive skin
•James has: red hair, brown eyes, pale skin




Tuesday, October 9, 2012

Do a happy dance

Maisie loves her piano play mat. It's safe to say that it's hers for now, because when James comes home it will be time to share.

She loves to dance and hit the keys to play different songs. Maisie definitely knows what she's going to play and will change the song if she doesn't like it. Her current favs are "Little Bunny Foo Foo", "Five Little Speckled Frogs" and "This Old Man". Sometimes Maisie will shriek and squeal when she really gets going. Today Maisie was moving so fast she spit up, but at least she was happy about it!

***
We are also thrilled about James making it to 6 pounds! Today the Developmental Therapist and I came up with a plan to move him to four hour feeds instead of every three, meaning he gets more at a time but less bottles a day. I was surprised to find out this afternoon that they pulled James's feeding tube because the team at PSL thought he was perfectly ready to bottle feed all of his meals. Way to go, James!

***
I have to also give a huge shout out to the Grandparents, who are doing a great job (and have been for a while) supporting the little dragons and advocating on their behalf when we can't be with them. Currently, everyone is taking a care time and feeding shift with James, watching Maisie during the day while we are at work AND somehow managing their current lives/families/jobs. I feel like we are barely holding things together at times and I don't know what we would do without our amazing support system. We struck family gold. A million thanks to the Grandmas and Grandpas. XOXO

Monday, October 8, 2012

Making up for lost time

There is so much to be said for a great nurse in the NICU. In level 3, we had two amazing primary nurses who took care of the little dragons like they were their own children. Many other nurses were just as amazing. When we've made the move to the graduate NICU, things are a bit more relaxed and there are many more nurses to meet.

Feeding is often a battle ground between parents and nurses. At least, that's how I feel. Every time I hear the word "cues" it makes me want to bang my head into the wall in frustration. Some nurses will not bottle feed unless they see "cues". In my opinion, it's whether they choose to see the cues or not. Sometimes the nurses will just dump a feeding down the gavage (feeding tube) because they are too busy, they are overwhelmed, etc. But the reason they give you is that the baby is not showing "cues". Well, let me tell you: every time we are there our babies will take a bottle. Since we are both working full time, we can't be there for every feed.

The key is to get a nurse on board who helps train your baby (and all the other nurses) not to rely on bottle feeding once or twice a day. Like anything else, babies have to learn the routine of when and how they will eat. We were lucky to have Nurse A do this with Maisie; today Nurse H started this with James. Hopefully the rest of the nurses will follow suit and give up on the "cues".

***
James weighs 5lbs 15oz. That's right - he's nearly a six pounder! Part of that is his wonderful ability to take bottles of 55-60 cc's even though a full feed for his weight is 45 cc's. Today he took 5 bottles! He is definitely making up for lost time. James also LOVES to be held, and will cry until he gets picked up sometimes. He still loves his classical music and frog bean bag, but the pacifier doesn't have the magic it used to.

The plan is to continue to work on eating - he took 5 out of 8 feeds (all which were offered to him). In the next week or so, they will schedule his shunt surgery and we will be that much closer to coming home.

Friday, October 5, 2012

High five

Maisie had an appointment with Dr Jim yesterday and is doing great. In fact, we found out that she weighs five pounds more than birth, and is now 6lbs 11oz. At birth, her arm was roughly the size of my middle finger. Now, I'm trying to get used to the fact that I need to use two hands to lift her.

Maisie has been sleeping well at night and often gets in 6-7 hours between bottles. She's a pretty easy baby. It will be interesting to see what happens to the dynamic when James comes home in a few weeks.

***
James is now 5lbs 7oz and is doing pretty well on his bottle feelings. He definitely loves to eat, but it does take a lot of energy and he is working on building up stamina. Also, the doctor put James on a specialty formula to better support his health and growth. His weight gain, which plateaued after surgery, is starting to take off again but not as fast as they would like. Our goal of getting James home by Halloween still seems attainable at this point according to Dr Hawkeye. We hope to stay on track for this.

Wednesday, October 3, 2012

I've got a reputation

Yesterday James was settling into his new room in the Graduate nursery. He had weaned on his oxygen and was having a great day. Dr Hawkeye is his doctor again, and he wasn't quite sure if James was ready for a bottle.

There's this saying around the NICU- "Never trust a preemie". With James, they just don't know what to do with him. Dr Hawkeye told me yesterday that he is in disbelief that Jimmy James Thrasher, as he now calls him, even made it to 14 weeks and survived the first night. But we knew he would- James has been proving statistics and doctors wrong since March 14th when his water broke at 12 weeks.

***
After Dr Hawkeye tapped his VAD (Ventricular Access Device) for excess fluid, he gave us the go ahead to try a bottle. He said it could go one of two ways- up or down. We knew James would do amazing and that's why we had been advocating for this. On the other hand, most everyone in the NICU believed that James would have trouble swallowing after being ventilated for 13 weeks. They believed he would have an oral aversion and might need a G-Tube before going home.

James and I sat down with the Developmental Therapist and got to work. He had his whole feed plus some in the bottle, a total of 53 cc's.

James guzzled that sucker down like there was no tomorrow. He finished it with a level 1 nipple in 20 minutes. He did an amazing job. And this proud dragon mommy took the photos down to the Level 3 NICU to brag to Dr Hawkeye and the rest of the naysayers, who were all very impressed and proud of James.

We are another step closer to coming home.

Monday, October 1, 2012

King James of the NICU

When you've been at PSL 97 days, There comes a time when you're the oldest baby around. James has definitely demonstrated that he is here for the long haul. By now I'm pretty sure he's had every single nurse that works on level 3 and a couple that work on level 7. No one can believe exactly how much James has grown over the past couple weeks and especially how far he's come since arriving there in the wee hours of the morning of June 27th.

Today James was moved to the penthouse suite aka the Graduate NICU on level 7 and we are planning on him being there for the next couple weeks. Hopefully it will go better than the last time James was upstairs. His doctor says James is so stable that he believes everything will be just fine-however; James doesn't exactly play by the rules.

Lately James has been so bored in his isolation suite, staring at polycarbonate cabinets and blank walls that he's started going to rounds with the doctors. He sits in a swing, watches and listens as the staff discusses the other babies. This is a privilege only King James of the NICU has been afforded.

Now that he's moving up to the Graduate nursery James won't have so much time to socialize - he'll have to work on weaning his oxygen and learn to bottle feed. Both are big tasks but our amazing little dragon can handle it!

***PS: James gets credit for the Denver Broncos vs Oakland Raiders win. He sported his lucky Bronco hat and football sleeper all day yesterday! We kept Maisie away from her Broncos outfit (which she threw up on two weeks in a row, coinciding with two losses).