Phew!

First thing's first....MRI results came back benign (yay!!).

We went to Children's Hospital yesterday for an "urgent" MRI. We went into Radiology to get ready for the MRI. There was an nurse there who tried her absolute hardest to keep Evelyn still to avoid anesthesia. No luck. Evelyn was insisting on moving. As we were waiting for the anesthesiologist, Lexie's partner Becky (who happens to work in Radiology) came by to say hi. I honestly can't even put into words how comforting it was to see a familiar face. It also reaffirms my belief that Lexie and I shared that crappy perinatal experience because we were meant to be in each other's lives. So, we finally get Evelyn into the machine around 1:00. Two things - 1) MRI's are really, really, really loud. I had no idea and 2) We weren't allowed to be there for the anesthesia which, in retrospect, was a good thing. I'm not sure I could take seeing her go under. They gave us this little pager thing like you'd get in a restaurant and said they'd page us when she was out of recovery. We got a quick bite and went back to the waiting room. Becky came out and brought us back. She was able to get information from the radiologist so we knew right way that it was good news (again, I can't explain how wonderful it was to have Becky there - we owe her a night of free beer).


Because Evelyn is so young gestationally, we had to stay for a 24-hour observation period to make sure she didn't have any side effects from the anesthesia. Mostly they were looking for apnea...more on that later. We got sent up to another more general department to get our room for the night. After some basic check-in stuff, Greg and Clara left to go pick up Alex and go home while I settled in with Evelyn. So, the radiology department was absolutely fantastic. Every person we encountered there was kind, compassionate, and went out of their way to help us. The folks on the more general medicine floor, however, appeared to be organized by a bunch of monkeys. We've been very lucky that since November we've had excellent nursing and other medical staff care. It's amazing how lucky we got with all our nursing care. Nurses are so important to your experience in a hospital - much more so than the doctors because you really build a relationship with your nurse. You look to your doctor for information and news, but you look to your nurse for support and advocacy. We've been so pleased. Now, that being said, last night was an exception. We've only had a problem with 3 of our providers: 1) weird affect nurse lady who asks questions, completely ignores the response, and then looks at you like you're crazy, 2) dangerous nurse lady who walks around the NICU wreaking havoc on tiny little babies fighting for their lives, and 3) dumb as rocks nurse lady we got during the night shift last night. Just a taste...she comes in during the night to check on Evelyn. She has the door wide open to let in light, she opens the bathroom door to get more light, she then shines a flashlight in her face. Evelyn (unsurprisingly) wakes up. Nurse Dumb-as-Rocks says, "Oh she's awake. She must be hungry." And she does this TWICE! Greg suggested I find where she lives, shine a flashlight in her face, and when she wakes up say, "Are you hungry?" Anyway, I have lots more dumb nurse stories to tell but I'll stop there.

Okay, moving on....they had Evelyn hooked up to a crappy pulse oximeter that was making her look like she was desat-ing. Once they finally figured out the issue (at 4:00 am), they got her hooked up to a better one that also monitored her respirations. My question is - why wasn't that always hooked up to her since we were there to monitor for apnea?? Stupid monkey department.


Venting done. The really great news was that the fluid is benign. I'll quote from the report:
- No signal abnormality within the brain
- The brain appears normally formed
- No malformation of cortical development is seen
- Ventricular size is normal
- Myelination is appropriate for age
... and so on leading up to:
- Findings are consistent with benign extra-axial spaces at infancy.

She does have two small sub-dural hematomas most likely due to stretching of bridging veins. She also has a funny shaped head ala the alien from Alien due to prematurity.

This is nothing new to us. She and Clara have always had heads shaped like this. They're actually getting quite a bit better.

So now we just watch her head and follow-up as needed. Here's a picture of her brain:

All that white stuff around the brain is fluid. It looks like a lot to me, especially compared to a normal brain (below) but I'll take their word for it. Note:this picture is a different type of imaging. The only thing to really focus on is how much closer the brain is to the skull than Evelyn's is.

I guess the brain with either absorb the fluid or it'll eventually grow into the skull.

I have to say that the last 5 days have been incredibly hard, but I recognize the relative nature of this type of scare. It's hard not to after staying the night at Children's and seeing 4 year old cancer-stricken kids walking around. My issues are harder than, say, someone who's worried about constipation, but they are nowhere near as difficult as what some other parents go through. And to see the little ones really just fighting to stay alive is empowering and terrifying at the same time. My heart goes out to those families. I cannot imagine seeing any of my children go through that. It really is something very abstract until you have children and your entire life's purpose completely shifts. All you want in the world is for your baby to be okay. I couldn't shake the feeling last night that somewhere in that hospital some mother was saying goodbye to her little baby.

One more thing - the local Harley Davidson chapter came by the hospital yesterday to provide free pizza to all the families and I know it sounds weird but it just brought me to tears because it was so incredibly kind. They were so sweet and had such kindness in their eyes.

So now let's hope that Greg and I are done with these scares. I have never fallen apart into such a complete mess the way I have been since last week. I really felt like it was too much to handle. I feel like everything leading up to this has been hard, but I've maintained a sense of humor throughout the sadness. This one felt like a punch in gut and I'm so relieved to hear the word "benign" and I am so happy it came from someone I know (Becky) and I will always associate her with one of my happiest memories. So, thank you Becky.

Take care,

Kris

Welcome back

After a couple months off, I've decided to start up the blog again. We've had some interesting weeks and today we got some more interesting news. So....here's our update:

Alex:
Toilet trained (finally!!), loves his sisters sooo much, and all around good little guy. He's moved up to the big kid preschool and is doing well. He rode in his charity Trick-a-thon today (benefiting St. Jude). We raised $175 - thank you all so much for contributing. It was a very cute little event at a nearby park. The little kiddos even got a police escort to and from preschool.

(Police escort for Trike-a-Thon)

(Swimming lesson)
Evelyn:
Generally she's doing okay. At her 4 month well baby visit her doctor was concerned about the growth of her head. He sent her for an ultrasound to rule out hydrocephalus. The good news is that she doesn't have hydrocephalus. The bad news is that she does have fluid build-up - it's just on top of her brain instead of inside her brain. It's called extra-axial fluid. It could be a normal variant or it could be abnormal. We'll be trying to get in for an MRI soon to find out. If it is abnormal it would mean that she'd need a shunt to drain the fluid. From there we just hope the extra fluid has not caused any pressure on the brain leading to damage.

She also had a developmental evaluation and is delayed beyond her 8 week prematurity. The therapists were concerned about a general lack of strength and about her very much preferring to look to the left. She'll begin receiving physical therapy weekly as soon as all the paperwork goes through.

She's a big girl (12 lbs 2 ounces) and likes to smile and coo a lot.

Clara:
Also doing generally okay. We had a set back in February when Alex brought a respiratory virus home from preschool. Both girls got sick, but Clara got sick enough that she had to be readmitted to the hospital. She stayed there for 4 days until she was stable enough to send home. Her oxygen needs were increased quite a bit to help her recover (1/2 liter - up from 1/8 liter). She's now on 1/16 liter. Her pulmonologist thinks she'll be on daytime oxygen through the summer and nighttime oxygen until the end of the year. Medically, I know this is not a huge deal. As a mother, however, it's heartbreaking.

She also had a brain ultrasound to follow-up on the enlargement of her ventricles. She also has extra-axial fluid although not quite a much as Evelyn so there is no planned follow up.

Also like Evelyn, she's qualifying for physical therapy weekly. She's a little scrapper - 9 lbs 15 ounces as of last Monday. She also is a big fan of cooing and smiling.

Greg and me:
We're doing okay. This latest round of developmental delay and brain issues is just about enough to make us crack. We feel like we've been pretty good sports, but are simply exhausted by what feels like a constant barrage of bad news. We're ready to get some good news and start enjoying this family of ours.

In terms of caretaking twins, our transition has been easier that we thought. The girls are generally sweet and pretty predicable. We feel like we have the day to day management under control. I quit my job so I can stay home and deal with some of the medical issues. It's been a little weird not going into work every day, but I'm adjusting to my new role as house coordinator. I've got spreadsheets (color-coded, thank you very much) and a good schedule down. We're still pretty busy, though, so please please please forgive us if we do things like send Thank You notes out several weeks late.

I'm going to vent a little too...please don't say things like, "Oh, well Clara was only in the hospital for 4 days" or anything else that belittles our experience or our sadness. It drives us a little crazy. We can handle a lot, but we are a little extra special sensitive these days.

That's it for now. I'll post more when we've got more answers about Evelyn's brain.

Take care,
Kris

p.s. send out good thoughts and prayers to my friend's new baby Nate. He's getting a rough start and he, his mom, and his dad deserve some good vibes.

50 Days

50 days after delivery, we have our lovely youngest daughter home!!! Clara came home Friday afternoon after quite a few mix-ups with the medical equipment company (we're getting a formal apology from the CEO of the hospital - aren't we fancy!). We're thrilled to have the whole family together and we are so, so, so happy to never step foot into Rose every again. The care we got there was phenomenal, but I am so ecstatic that I'm done with that place. I never have to leave there without a baby ever again. I never have to hear the beeping of the NICU ever again. I never have to look at the ugly wallpaper in the NICU every again. And, most importantly, I can be with my children all the time and from the privacy of our home. Almost exactly 3 months of that place...I'm over it.

Little Clara is adjusting a bit to being home. She had a rough night the first night and a better night last night. We’re hoping she turns into Evelyn pretty soon (self-soothing, quiet, etc). She came home attached to oxygen and the pulse oximeter - both of which have been an adjustment for us. It's hard enough with two babies and then having one tethered to all sorts of things makes it even harder. Just trying to sit on the couch take about 6 minutes. You have to get the big twin boppy pillow set up, get Evelyn comfortable, unplug Clara, move Clara onto the pillow, and plug her back in to the pulse ox. The oxygen tank has a big 25 ft tube so we can move around with that. The pulse ox, however, only came with a 4 foot cable. Oh well, we'll get used to it I guess.

We spoke with the pediatric pulmonologist last week and he's describing Clara's issues as Chronic Lung Disease. It sounds scarier than it is. Basically, it means that all the oxygen support she got caused some damage to her lungs and she continued to need the breathing help for longer than she should have. Eventually she'll outgrow it and by a year old she should be like any other baby. It also means that she's at an increased risk for asthma. In the grand scheme of 50% fetal mortality rate with momo twins, we'll take the asthma. Her short term needs are as we expected - the doctor thought she'd be on oxygen through this summer and she will need to stay at home through cold and flu season. Her big outings are doctor appointments and even those are in the process of getting submitted to insurance for home visits. She's just really fragile and we can't risk having her out in public where well intentioned but sick strangers will be breathing all over her (it already happened - 3 times -on the way out of the hospital....having two babies and one with tubes attached to her understandably elicits curiosity). The doctor wants her home until April. It's funny though - if she's on oxygen until the end of the summer, we will have been dealing with this momo twin fallout for a year. We got diagnosed last August. It's been a long 6 months and will continue to be a long 6 more months.

Anyway, Clara and Evelyn are both taking antacids for reflux now. Once we heard the symptoms we figured out that Evelyn probably has it as well. It's not as simple as spitting up (which neither of them do). The symptoms are more subtle - arching their backs while they eat, frequent hiccups, and gagging during feedings.

Our last concerns with Clara are her weight gain and getting cleared for ROP (Evelyn was cleared last week – see Greg’s latest blog entry). Clara has another eye appointment next week and hopefully it’ll be her last. She also hasn't been eating much since we brought her home and she and her sister are starting to look pretty different again. She looks tiny next to Evelyn. We'll talk to the doctor about it tomorrow at her first doctor's appointment.

Now that we have Clara home, I'm going to sign off of the blog. It was a great way for me to get information out and to describe what we were going through emotionally. Even though we still have a long haul ahead of us, I feel like we're in a good place and I'm ready to let the blog go. Thank you to everyone who kept up with our journey and offered support. Greg and I appreciated it so much - it was nice to know others were thinking of the girls and pulling for them.

So, for the last time, take care everyone!
Kris

p.s. enjoy our last round of pictures: Getting ready to come home

With Mom

With Dad

At least one of us is getting sleep

Saying goodbye to the NICU

Juggling two babies

Feeding one while the other sleeps

Only slightly identical :)

Big brother giving kisses

Home together at last

Portable oxygen and pulse oximeter

The big oxygen tank

25 feet of tubing (and Alex's butt crack)

Portable tanks for bedtime and doctor visits

Clara and Clinton

Clara and Bill Clinton now share a medical condition....acid reflux. A pediatric pulmonologist took a look at Clara's second round of x-rays after all the meds she was on didn't work. His assessment is that nothing is wrong with her lungs. His best guess is that she's suffering from reflux and the reflux is causing the oxygen dependency. So, they started her on antacid today. We need to talk to the pulmonologist in person to clarify everything, but what we think is happening is:

1) She doesn't have a serious medical issue with her lungs (thank God)

2) The reflux should be a transient condition that she outgrows

3) She'll still need to go home on oxygen and a pulse oximeter for what's looking like somewhere between 3-6 months (so, basically, wish us luck on leaving the house with two babies, an oxygen pack, and a monitor....pizza delivery here we come)

4) She's considered medically fragile at this point and we need to be really, really careful about keeping her healthy. A normal cold that any baby would get will send her to the hospital and be quite dangerous for her. So don't be offended if we let you hold Evelyn and not Clara. And please don't be offended if we ask you not to come over if you have a cold.

5) She may be able to come home as early as Friday. We're taking this news with some caution, as we are recovering from thinking she was coming home yesterday....best not to get overly excited until we're actually carrying her out of that place.

6) She'll start outpatient follow-up with the pulmonologist (probably weekly) after she comes home.

All in all, good news. Certainly we had hoped to avoid having a really fragile baby, but we're very relieved that her lungs look okay. Let's hope this reflux hypothesis pans out and we can fix everything.

Evelyn continues to do well at home. She's a very sweet, very laid back little girl. She had a big visit today with her boyfriend Anderson (Lexie's son) who is super cute and keeping his parents plenty busy.

Here are some new pictures:

Visiting Clara in the hospital

First bath at home

Hanging with the big brother

Sleeping on Dad

Most people show off the cute pictures...I prefer the goofy looking ones

Best picture ever

I happened to catch Evelyn looking like she was smiling

Aunt Mandy's visit

Take care,

Kris

Another delay

Clara's breathing has somehow defied the odds and gotten worse. They're trying a stronger diuretic and are re-doing the chest x-ray today. Stay tuned.

Kris

That fiesty Clara

They did a chest x-ray today to see what's going on inside little Clara that's keeping her from breathing correctly. She's showing signs of lung inflammation that the doctors think is a result of the oxygen she's been receiving. I guess some babies are susceptible to inflammation. They started her on a bunch of treatments today to try to clear up the problem - an inhaled steroid and a nebulizer. They also did one dose of some diuretic that sometimes helps as well. They'll give it until Monday or Tuesday to see if it works and they can reduce her oxygen and flow needs. Either way, it sounds like she'll be coming home next week....it's just a question of whether or not she's coming home on oxygen only (preferred) or oxygen and a pulse oximeter (a pain to deal with, but less of a pain than driving to the NICU everyday). So we shall see. She also had her follow-up eye exam looking for Retinopathy of Prematurity. She's still looking ROP-free, but her retinas are too immature to completely rule it out. She'll have another exam in 3 weeks. Evelyn's follow-up is scheduled for next Thursday.

Evelyn is adjusting really nicely to being home. She's just a really sweet, mellow kid. Well, right now she is....that could always change. But, generally she only cries when she's hungry, wet, or dirty. Last night Greg and I had to wake her up for both her feedings. This is a lovely problem to have compared to someone (ahem, I'm looking at you, Alex) who woke up every hour and then cried for 2 hours after his feedings.

That's it for now. Wish us luck for some good news for little Clara...she could use it. We're still hoping for great news for her. Maybe this will be the time we get great news.

Take care,
Kris

Homecomin photos

Day two went better. Evelyn settled in today and went back to her 4 hour schedule which I appreciated a ton. What did I not appreciate, you ask? I did not appreciate being showered in vomit. Ahhh...the joys of newborns.

Here are some pictures:

Alex's lego representation of SexyVan

Last time together in the NICU crib

Going home!

Home at last

New digs