Thursday, August 30, 2012

Our little dragon is growing up

Yesterday they planned to extubate James, but he was acting up all day thanks to his vaccinations. When I arrived in the early afternoon, it seemed as though the plans had been tabled. In the course of a half hour, Dr Irish K decided to try the CPAP mode on the ventilator and see what James was capable of. He seemed to be doing well and I went upstairs to meet with Maisie and the Developmental Therapist, who wanted to evaluate her.

After my time with Maisie I headed back downstairs to James to find him off of the ventilator all together and flying high on the SiPAP in a new space in the NICU! (He was moved to a new space to accommodate a baby who really needed isolation). The SiPAP provides intermittent breaths to help remind babies to breathe, while keeping a continuous pressure of air through the nostrils. James is totally breathing on his own with reminders from the SiPAP.

We braced ourselves overnight and tried not to jinx his progress. He never dropped his sats lower than 75 and was quiet as a mouse overnight. Of course, a bit of Ativan helped with this. By morning his cry was audible, though hoarse, and he was definitely proving himself.

This afternoon when I arrived I broke my cardinal rule of the NICU: no tears. I walked in to discover James in an open crib, doing awesome on SiPAP, and dressed in a cute outfit for the first time ever. I could barely hold it together. I listened to his faint and beautiful cry, thinking back to the last time I had heard it: over nine weeks ago, when he was pulled from my abdomen screaming.

Tonight at 9:00pm James was moved to the Graduate Nursery. Though they're still trying to shuffle babies around to get James and Maisie together, we are super excited for his progress. We will be here for a while- we have to work on growing, lungs, and eventually a reintubation, reanastomosis and hernia surgery. But there is an end in sight. We couldn't be prouder of James and all that he has overcome.

Tuesday, August 28, 2012

Problems / Progress

James has typically been our medical mystery boy. He's had a whole textbook full of experiences in his 36 weeks gestational age, and at times we feel like he has checklist to try everything in the neonatal world.

Maisie has had her own challenges, and we got a taste a month ago when she reacted to the hepatitis b vaccine. However, it was kind of brushed off and when it came time for her second month vaccines Sunday night, I warned the nurses about the first incident and we went ahead with several shots critical to these babies. Maisie is extremely hypersensitive to vaccines and though we can't pinpoint which one is causing the problem, we can definitely say we are thankful she is in the NICU. The nurses have kept a close eye on her and have had to bag and perform CPR on Maisie due to extreme apneas and bradycardias over the past 48 hours. I shudder to think what would have happened if she were at home.

Maisie is feeling a little better and we are working on formulating a plan for her four month vaccines, which she will be home for. The whole situation has made us feel very vulnerable since Maisie is so close to coming home. She is starting up bottle feeds again today and was so disappointed that we couldn't feed her - the nurse wanted to tube feed rather than force the issue.

James, on the other hand, has been an absolute cupcake. Aside from a random dirtball incident on Sunday, he has been pretty stable and not doing much of anything but having good days and nights. He is loving his new room and is finally gaining some ground on the ventilator. Dr Irish K wants to try to jump the vent tomorrow (maybe if I avoid the big "E" word, he won't hear me). James has also been gaining weight and is currently 3lbs8.5oz. Things are looking up for our little man. All the nurses think he is so stinking cute the way he makes eyes at them - we definitely have trouble on our hands!

Sunday, August 26, 2012

Two Months Old

Today the little dragons are two months old. They have a lot to celebrate: gaining weight, healing, overcoming insurmountable obstacles, and helping to change the way some doctors think and manage their patients in the NICU. For being two months old and almost 36 weeks gestationally, I think they have achieved some remarkable accomplishments. We are incredibly proud of Maisie and James and will continue to fight for them every step of the way.

Maisie has been kicking her brother's behind for a long time- literally. At 24 weeks when we finally found out that baby B was a boy, Maisie's foot was right next to his anatomy in most of the scans. It took several minutes to get an image without her foot next to his man parts. Now, she is a whole pound bigger than her little brother! The race is on. We keep telling James that he shouldn't let his sister outweigh him but he's happy doing his own thing.

Maisie: 4lbs2oz
James: 3lbs2oz

In other news, James has his own private room. Normally an Isolation suite, they relocated James to the front corner at the opposite end of the NICU Saturday night. They've been so busy with micro-preemie admits and twins that this spot opened up and it was perfect for him. James loves his new room. It is quiet, in a corner, and he has been on the lowest ventilator settings since moving there. Granted, it's not Swedish - but if it helps James get home faster, we'll take it. He also had a huge compliment from his new doc, Dr Irish K: she said James had an amazing week, that she was so proud of him and that he is doing great!

Maisie has been a bottle feeding queen! She is going up to three a day and hasn't had another choking incident. She often finishes her whole meal plus some, and loves to be sleepy and side lying when taking her bottles. Who knew? Maisie loves to pay attention to everything going on around her, so it takes her a couple minutes to get in the zone and really focus on eating. She's doing awesome and proving several of the nurses wrong. She may be one of the smallest babies in the Graduate Nursery, but Maisie wants to eat like a big girl!

Happy Two Month Birthday little dragons. Mommy and Daddy are so proud of you.

Thursday, August 23, 2012

Goodbye Honda, Hello Convertible!

Maisie had a big day today. She got rid of her bulky isolette/private island aka the Honda and upgraded to a an open crib aka The Convertible. It's not fancy like the one she'll eventually be in at home, but more like a Tupperware container. Nonetheless, this is a big day for our 3lb 14oz little dragon.

James enjoyed being held by Daddy and getting out of his isolette/private island aka the Cadillac. His Cadillac needs some work as it is rattling around; but he will likely get kicked out of it soon so another micro-preemie can have it. James will be downgraded to a Honda or a Toyota while he's on the vent and in the level III NICU.

In other news the little dragons have been cupcakes and aren't causing much trouble. That's what we like to hear!

Tuesday, August 21, 2012

8 weeks old and off the blacklists

The little dragons had a pretty monumental day. They were both double cupcakes with cherries on top, and we were thankful for that.

Maisie, who has been blacklisted from bottle feeding since her choking incident tried a bottle with nurse E who "loves nippling". She was destined to continue tube feeding until she got bigger and met with the Developmental Therapist to determine the cause of her feeding problems. Nurse E announced that tonight she took 40 ml's - her whole entire dinner plus 8ml's! Our appointment with the DT was cancelled. I was so thrilled by this news I could hardly sleep. We are one step closer to coming home. She is also off the pulse oximeter and does not have a blanket covering her isolette/private island/the honda. They are prepping Maisie for an open crib, which could happen by the weekend. She is 5 grams shy of 3lbs 12 oz, meaning that she currently weighs 2lbs more than at birth.

James, who has been blacklisted from holding due to his dirtball shenanigans last week finally got approved for some kangaroo care by nurse M. But before that could happen, he started two new treatments: Lasix and an inhaled steroid to help remove any fluid and inflammation in his lungs. The Lasix is a diuretic and he definitely needed it- what we thought was weight gain was 4oz of edema. James proved this by soaking his entire diaper and bed in the course of a few hours. Needless to say, he is back to 3lb1oz, but this is pure weight- no edema involved. Both of these treatments will help James' ventilation requirements over the next few days. It was pretty apparent during kangaroo care, as he didn't desat once for over an hour and a half! By tonight, his oxygen was at 26%, the lowest I've seen it ever.

I can see a faint light in the end of the NICU tunnel. We will have some set backs, but I am thrilled at the progress these little dragons have made. Proving people wrong, one day and one doctor/nurse at a time!

Sunday, August 19, 2012

Oh my, how they've grown!

Sometimes these little dragons just bulk up right before your eyes, and you know that they are getting bigger. It's even harder to remember where they came from and exactly how small they were nearly 8 weeks ago. James's new neighbor babies are micro-preemie twins and seeing them brought me back to the days when our babies were under 800 grams.

James is now 3lb1oz! His weight gain is really taking off after the shenanigans earlier this week. Our little "dirtball" also got his first bath. I'd like to say I got a picture but it took three of us (Jimmy, nurse J, and myself) to wash him and hold down his extremities. Like any little boy he is very helpful but still wants to get dirty. Let's just say when you stool out of a stoma on your belly, things can get messy. Luckily with all three of us we managed to keep things mostly under control and get James to a squeaky clean state of being. In fact, he was so clean that his stoma bag came off three times last night, resulting in a huge mess for the nurses. I think this kid just likes to cause trouble!

Maisie has been working on bottle feeding and currently weighs in at 3lb9oz. Of course Jimmy is a natural and together they did 10 ml's - one third of her dinner! Maisie and I are still working on our technique. Let's just say that a super hungry baby and novice mommy = choking and baby CPR. Why not get both babies on the resuscitation bandwagon while we're in the NICU? Luckily Maisie is just fine, but we will have to find some preemie flow nipples to get her in a better spot for future feedings.

In other news, we have nearly 5,000 page views for this blog! Thank you everyone who keeps up with the little dragons and their progress, and who wishes them well. We have readers in 13 countries, many of whom we have never met and have found us by word of mouth. Thank you for being a part of our journey. ~ Erin, Jimmy, Maisie, and James

Thursday, August 16, 2012

Angry Baby / Happy Baby

James is still "clamping down", which they say might be like an asthma attack or maybe he's holding his breath. We have our own theory on what's been happening, but of course the doctors have no idea about our "medical mystery baby". In any case, they've kind of gotten a handle on treating the clamp downs before they get to resuscitation level.

Yesterday Dr R told me that he'd "never seen anything like James", and arranged more tests to try to identify the cause of the clamp downs. When those tests came back normal today Dr R looked frustrated. I asked him if he was, and he laughed - "I'm sure the parents are frustrated that we don't know what's going on," he said. I told Dr R that I wouldn't be surprised if I had a medical mystery baby since I have been quite the medical mystery myself. Dr R responded, "like mother, like son". They still don't have a clue and are quite perplexed by James. They don't know what to do with him but let him grow and keep him calm with Ativan (he can be quite the Angry Baby).

Our theory is that he is not liking his tube and after an accidental extubation and subsequent quick CPAP trial Sunday night, he realized how great it would be without the tube. However, he absolutely hated the CPAP on his face and became Angry Baby, forcing him back on the vent. In the next 12 hours they had to replace his tube three more times due to various reasons, which brings us up to the chaotic Monday episodes. He is 34 weeks now, almost 3 pounds, and is determined to get off the vent but not the patience or the physical endurance quite needed. The Ativan has helped to keep Angry Baby at bay and thus the clamp downs are less frequent.

In Maisie news, she tried bottle feeding and took 2 ml's before falling asleep. She gave it a noble effort but she gets way too comfortable with me. Jimmy will have to try as she is much more alert and awake with him. She weaned down on her oxygen to 1% and is at 3 pounds 6 ounces.

Jimmy has been amazing at catching Maisie smiling and so we've posted a picture below. James should take a clue or two from his sister. They both have very distinct personalities, that's for sure!

Tuesday, August 14, 2012

Tight rope

They say the NICU is like a roller coaster. I would agree, but I think it's more like a tight rope. You might have a net, you might not. There may or may not be someone to catch you when you fall.

The past 24 hours or so have been especially indicative of this in the NICU. I wish this post was a happy one, or a one to celebrate milestones and accomplishments. However, I'm just in the mindset of putting one foot in front of the other, continuing to walk the tight rope we are on.

Yesterday James started having apnea spells and bradycardias so bad he had to be resuscitated several times. Once they finally got a handle on things they still had no clue what was causing the spells. He was clamping down, they said, and not even the ventilator or bagging worked to get his stats up. They figured infection might be causing the apneas and started antibiotics along with a huge assortment of tests. All are negative but they are still trying to rule out different things. Above all, they want to try steroids and get him off the vent.

Maisie had her own brady episode that scared the nurses in the Level II NICU pretty darn good. I swear these babies have some sort of twin communication.

Luckily today was a much better day. They are both being "cupcakes" rather than "dirtballs". (These terms of "endearment" come from a former nurse who worked in the old PSL NICU with our Primary nurse M and Dr Hawkeye).

The NICU is so much of a tight rope that you don't want to make friends, because you are just trying to get out with your kids in mostly one piece. But after a while of running into people in the same room, you start talking and you find things in common.

Yesterday, while James was pulling his stunts and getting the attention of the big docs, our friends / neighbors in the NICU and fellow micro-preemie parents were gathering all of their friends and family around their little one, who had taken a turn for the worse. Today I saw their parents & grandparents in the waiting room and I was hopeful that things had improved. Walking into our room, our neighbor baby's bed was empty and ready for the next baby born too soon.

The NICU is a tight rope. It could have easily been us, but for some reason our little dragons are strong enough to fight on. We are beyond thankful for their endurance, determination, and for every moment they have given us. We fight on for another day, working on lungs, feeding, growing, and developing.

Saturday, August 11, 2012

Moving on up

Maisie is now in the Graduate Nursery (aka the level 2 NICU). She's still at PSL, just on a different floor from James. She's been ready for this move for a while, but they've been kind enough to keep the little dragons together for our sake until an overflow of new admits forced Maisie upstairs yesterday.

I don't know how to feel about it. First, we have a good view of the mountains but we are crammed in a tiny room with several other larger babies. There are only two nurses taking care of seven babies. In a way, I'm happy Maisie has hit this milestone but I'm nervous about how this might impact our schedules and cares. So far it hasn't - but she may start bottle feeding soon and that will change everything.

James has been behaving without his sister and has been steadily gaining weight. He's nearly a pound over birth weight as of last night! Let's hope this trend continues so he can grow new lung tissue and get on to the CPAP.

In other news, I opened our weekly mail packet from Premera Blue Cross that contains our Explanation of Benefits statements. I was shocked to see the paper that disclosed Maisie's bill for two weeks at Swedish, not including the birth. I've attached a picture for your viewing pleasure. Notice the amount we are responsible for, as well as the amounts billed to insurance by Swedish for two weeks of care.

Thank goodness for insurance. I am SO unbelievably thankful for my employer, who kept my job during my extended leave of absence and provides this insurance. If there is anything our insurance doesn't cover during the NICU stay, Medicaid will automatically pay because of the little dragons' low birth weight. We are definitely feeling very fortunate right now.

Friday, August 10, 2012

Growing up fast

It's official: Maisie has hit the 3 pound club. She weighed in at an impressive 1400 grams or 3 lb 1.38 ounces. She is fast on her way to an open crib, which we've been told typically happens at 1500 or 1600 grams. If she continues trending the same in the weight gain department she could hit this mark by next week.

James, who has a few more challenges in weight gain, has started to make some progress. He weighed in tonight at 1190 grams or 2 lb 9.27 oz. Because of his iliostomy surgery he is having some trouble digesting the higher calorie fortifier and so the doctors have been fiddling around with different concoctions of breastmilk, fortifier, and TPN (IV nutrition). The TPN also provides the extra electrolytes James needs to manage his metabolic syndrome, which they now believe has been complicated or caused by the iliostomy surgery. So, to make a long and complicated story short we are excited that they are figuring something out to help James grow. The more he grows, the more lung tissue he will create and the quicker he will progress with his pulmonary function.

Our current goal is to have both little dragons gain as much weight as possible as quickly as possible without compromising their existing health. We are so proud of their progress so far.

Tuesday, August 7, 2012

Fiery Personalities

Today James had a new nurse filling in for a few hours. He was behaving, for the most part, and didn't pull an "Angry Baby" (screaming facial expression, legs kicking, arms flailing, stats dropping, etc). However, as James is still intubated and can't scream and cry due to the ventilation tubes in his throat, he has to resort to other means to show us when he's angry or uncomfortable.

James is very expressive. If you know Jimmy, you know he has great facial expressions and James is just like his Dad. If he doesn't have a furrowed brow, I get worried. He may have wrinkles by age 5; I will definitely have wrinkles by then. When James is "Angry Baby", you know it. If he's uncomfortable, his stats drop like a rock. When his diaper is wet or when he's not getting enough attention, he'll do something to show you - mostly along the lines of making the alarms go off. He is very particular about his position and loves to be curled up, perhaps reminiscent of the very constricted womb he came from.

James loves to have his head stroked and loves when we get hands on time, though it doesn't happen often. He has been exercising his arms and legs by pushing on the boundaries of his cuddly wrap. James is most alert and awake in the morning, and is particular about his nurses and doctors. He definitely prefers some more than others and behaves for them more - or maybe it's the other way around.

Maisie is pretty particular about a couple of things. First, she absolutely hates to get her temperature taken. She will howl and cry until its over unless she is really tired. They say it's comparable to having a baseball bat in your armpit - so obviously it's uncomfortable for the babies. I think for Maisie it's more about having her arm held down for a minute. Her other pet peeve is her oxygen - Maisie is very creative and has devised several tactics to get it out of both nostrils, out of one nostril, or off her face entirely. She's trying to prove she doesn't need it - but it hasn't quite worked out for her.

She absolutely loves to be sprawled out, all limbs wild and crazy. The nurses don't allow this and always contain the babies, but Maisie breaks free. You'll often see an arm or leg outside of the confines of the cuddly wrap. She is a wild one. Lately Maisie has been wearing clothes and loves it. Mostly I believe this is because it means she isn't being swaddled and she's allowed to sprawl out.

Maisie loves bath time and is tuckered out by the end of it. She's a night owl and likes to be up in the afternoon and evening. She also loves to eat and is turning into a chunky little preemie. Maisie loves to sleep when I hold her and absolutely adores staring at Daddy.

These little dragons have a bit of temper and can be little hellions when they want to be. But I guess that's what's worked in keeping these doctors and nurses in check. So I'll allow it for now - we just might be in trouble later though.

Sunday, August 5, 2012

We do things backwards

Jimmy's been trying to tell me for a long time that planning is overrated. I'm starting to believe him just a little bit more now after this whole crazy pregnancy thing.

The little dragons have been on their best behavior (mostly) so the past few days we've been working on some baby action items. Well, mostly me - Jimmy's been working, making actual dollars and keeping a roof over our heads. I've been working on things that typically happen before your baby/ies arrive, but as this post is titled, we do things backwards. For example:

1. Our water broke in the first trimester.
2. We announced our pregnancy and twins when it was over and they were a month old.
3. Baby items we own: a rattle, teether, dishwasher basket, bottle brush, some onesies, and 4 cute bears.
4. We did our baby registries this weekend, and we picked up cribs.
5. Until 2 weeks ago, we did not own a vehicle in which we could transport two babies in car seats (Jimmy's car cannot fit any, and mine can only fit one rear facing).

Tomorrow I am headed back to work for the first time in nearly four months, thus our "get stuff done" mode. As I've spent my Maternity Leave on bed rest, I need to get back in the swing of things while the little dragons are still in the hospital. Technically they are wards of the state and live in an institution, according to the Social Security Administration. When they come home (September or October hopefully) I'll be able to get them settled and spend the time I need with them.

It's crazy to think that I've spent a whole 1/3 of a year off for these babies, yet they are still in the hospital and will be for a while. I feel guilty leaving them behind for the hours I'll be at work. I know they're in good - no great - hands.

In honor of doing things backwards, here are the little dragons on February 29th, just two weeks before their world was turned upside down. I'll throw in their most recent one too, just to see how far they've come in 5 months.

Friday, August 3, 2012

Family photo time

Today the little dragons were behaving.

All the doctors said so. This doesn't happen very often - apparently there's something at play about a NICU jinx or offending the NICU god/s. Dr Hawkeye even told GGP how well they were doing, said "Jimmy James Dean" (Dr Hawkeye's nickname for our amazing little man) would be a NHRA driver at Bandimere Speedway one day, and then told GGP a joke. The whole team of neonatologists at PSL could not believe that GGP was a Great GP because he looked so good. Things were definitely looking up because the docs were spending time schmoozing and joking rather than learning new things about medicine thanks to the shenanigans of our children.

After visits from several family members, the little dragons got an extra special treat for being on their best behavior: a family photo op and dual kangaroo care time. They did phenomenally, and neither one dropped their stats or had an episode during their hold. Jimmy held James and I held Maisie. When it was time to put them back, Nurse L took her sweet time and made the minutes last as long as possible. We were so thankful for this opportunity to hold both at the same time and enjoy some quiet bonding time with our sweet little ones.

This is the first time we have held both of our babies at the same time. This is the closest they've been outside of the isolettes since they were born. We can't wait to have more moments like this - maybe one day one of us will get to hold both babies. What a concept. For now, we are thrilled to have a family photo with our tiny little dragons, though from afar.

Wednesday, August 1, 2012

We're cute but we cause trouble

If the little dragons weren't so darn adorable they might get sent to the orphanage, as GGP might say.

These past few days they've been desat'ing up a storm. Desats are when their blood oxygen saturation calculated by the pulse oximeter goes down below the set levels for each baby. Sometimes the desats come with apneas and bradycardias, but sometimes not. Desats can be a sign of infection brewing, respiratory issues or many other things in NICU land. They send the docs and nurses in a tailspin searching for a cause that may never present itself.

Maisie started out the desat dance over the weekend and was started on antibiotics to be on the safe side. Luckily, she stopped messing around pretty quickly and the doctors decided her desats and bradys were actually a side effect of her shots on Friday. When we visited over the weekend, she was very sleepy in her private island isolette a.k.a. "The Honda". She's feeling much better after much poking and prodding.

James started the desat dance Monday night and was all over the board, going from 100% saturation to as low as 20% and back again all night long. A work up was done and everything came back fine initially, with the exception of his blood gases and electrolytes which were telling conflicting stories. While James's results challenged the medical knowledge of all the Neonatal Nurse Practitioners (NNP's) and docs in the unit, he was chilling out in his private island isolette a.k.a. "The Cadillac" and having a grand old time watching everyone spend hours fuss over his test results. Today we learned a blood culture was growing some bacteria, so they started antibiotics in addition to the electrolyte-resolving therapies he was already receiving. Today James's desats were improving thanks to the electrolyte treatment. He will continue on antibiotics to clear his infection and we are glad they caught it super early; they will continue to manage James's electrolytes to better ventilate him.

These desats are nothing like our first couple weeks. These kids are just keeping the docs and nurses on their feet - literally. There's no rest for the weary in the PSL NICU, especially with our children.