Parents of Preemies Day

In honor of the first ever parents of preemies day (Friday, March 23) I thought I’d share some highs and lows of having preterm daughters.

Being premature means the road ahead is not easy but with the incredible NICU’s around the USA a majority of babies survive.  I did not expect to spend my maternity leave in the NICU watching my daughters fight for their lives every day.  I did not expect to go into pre-term labor at 19 weeks and at 27 weeks not be able to hang on any longer.  I will always have a sense of failure and wonder what I could have done differently which most mothers of preemies do.  It is quite common for parents of preemies to go through post traumatic stress disorder.  I luckily don’t think I have that.  I am thankful every day for my daughters but providing care is taxing and often not enjoyed.  I often look forward to the end of the day knowing that we survived another day which makes me sad.  I want to be able to enjoy the baby stages and I feel that their prematurity has robbed me of that.  For those moms who have carried their baby to full term congratulations and please be sensitive to those of us who could not.  Yes our babies are smaller, yes they require extra feeds, sleep, and in our case apnea monitors, oxygen machines, and medications.  I hope that those of you who follow our blog will never have to know how to change an oxygen tank or a nasal cannula on your child.  Or that you won’t know what a loud apnea monitor alarm sounds like in the middle of the night indicating your child has stopped breathing. 

If you want to do something in honor of this day and were thinking about donating to a cause this year and are unsure where to give, here are a few places that have made an impact in our lives and giving back is the least we can do. 

Holding Tiny Hands Foundation- A local foundation that provides support to parents in the NICU at Mercy and Methodist in Des Moines. http://www.holdingtinyhands.com/

Shelbi's Snugglies in Cambridge, IA- Who made the girl's quilts that were over their isolets in the NICU. http://projectlinus.org/index.html

To those of you who continue to provide us with support, Thank you!

March Sadness

My strategy this year was to go with the #2 seeds. Right now the 1, 3 and 4 seeds are 20 and 2.

I feel like this Empty unopened Coke Zero

Not much to report this week. I'm not getting surgery tomorrow and as I shift from sitting to laying down I feel the bee sting sensation in my glut ease a little and I'm a bit worried about how long I can handle the pain. The doc says 75% resolve in 2 years. I'm just coming up on year 1. I've been miserly with the ibuprofen, trying to do 400 mg doses two to three times a day. I had terrible dyspepsia after taking 800 mg qid for a couple of months. Mindy is having terrible back pains as well, hopefully its just a strain that will resolve over her next couple of days off. Basically, we're falling apart. Not much to report with the girls, they only weight them once a month now so we don't really have numbers to report. Just grinding it out really, hoping one day Brielle will stop arching and improve.

I tried to feed them and well, here are some pictures. Remember, I never had an easy bake oven when I was a kid.

Mindy demonstrates good technique

This isn't working so good, so I'm relegated to an easier feeding

I don't think this picture needs words.

Updates on Tony and the Cardiologist and Brielle and the Gastroenterologist

Tony and the Cardiologist

Tony had his meeting with the cardiologist today and instead of having a stress test done, he had an echocardiogram (ECHO) done because on his routine pre-op physical he was found to have ECG (different test than ECHO) abnormalities including upside down t waves in one of the, as he understands it, limb leads which may just be a physiological variant. However, with infarction, or ischemia, the t-waves should be symmetrical and inverted and these are not. We're just waiting on the results of the ECHO for further information. The preliminary thought by the cardiologist is something called Athletic Heart Syndrome in which the heart is enlarged because of significant amounts of exercise, over an hour a day, which Tony usually does, actually, when he can sneak out twice a day he does. He used to work out closer to 2 to 3 hours a day pre-preemies. The ECG abnormality may be a sign of Brugada syndrome which, if it is type I, could be severe, type II, not so much...

Not to be confused with the Borgata in Atlantic City

 Although he will probably be cleared for surgery on his micro discectomy between L4 and L5 on the right side, it looks like surgery may have to be canceled or at least postponed because of the limitations that would be placed on him. He would not be able to lift anything greater than a milk jug (8 pounds) for at least 2 weeks and it could be up to 4 to 6 weeks. He might not be able to drive in that time as well. It's simply unreasonable at this time for that restriction, and he enjoys being married. Since he's been preparing for the surgery he's switched from anti-inflammatories, the COX inhibitors like Ibuprofen to Acetaminophen only and he's had bouts of pain, especially in the middle of the night as the discs fill with fluid, and he has to feed the girls from either a kneeling, a knee down or standing position, but he's been tweaking the dosages and can sometimes get by on 1600 mg, well below the 4000 mg max. He'll keep trying for the next two months to help that back heal by doing things that create extension rather than flexion, it seems the swimming from the tri-training is actually helping stretch the back quite a bit, he's now comfortably under 8 minutes in the 500 yard time trials and close to 30 minutes in the mile swim, won't see him in London this year, not that he would be allowed to leave for that long, but the swimming may be the thing that saves him.

We'll keep you up to date on the ECHO results.

3/15/12 10:53 AM ECHO comes up normal. Tony's heart is normal. Sure there's a joke in here somewhere. 

Brielle and the Gastroenterologist and Pulmonologist
At 11:59 pm Tony finished feeding Brielle about 5 ounces since she has her scope tomorrow (today) morning at 7 am. Well, 7 am check-in for a 9 am appointment. Hopefully Brielle can handle not eating for 9 hours, it will be a bit tough on her, but we really need to figure out what the heck makes her arch so badly. Hopefully they can find something that can be easily fixed or treated. We'll keep you up to date on that as well.

Brielle will also meet with the pulmonologist to review her condition and most likely she'll be on the oxygen for another six months. The little peanut/piglet (not because she's fat, because she eats twice as much as the other girls) needs to have stronger lungs and we've seen some changes these last couple of days where she seems much more aware, the arching is not quite as bad and she's, for lack of a better word, playing with you or her sisters.

Brielle came back from her endoscopy, everything looked normal, biopsy results will come in about  a week. Here are some pics.

Brielle reads to Mommy.

 

Brielle distracted from her reading by a green wall.

Brielle giving a big smile to the nurses. They tell her that the GI doctor is a very good looking Italian gentleman. (They didn't actually say that)

There is no way the GI doctor is better looking than my daddy!

 

Well, he is kind of cute. No wonder mommy likes to come for follow up!

This finger is delicious!

Did you see my Tinkerbell cap?

Mom a little nervous about the procedure. Daddy says it's the doctor making her nervous.

Some R and R!

My dad and step-mom bought us a gift card for an overnight stay in WDM and we took advantage of it last night.  It was weird to be away from the girls that long but we enjoyed our time together.  We had a nice dinner, some time in the hot tub and then I slept for 12 hours straight and yes I could have slept longer.  We definitely feel refreshed (I'm sure it will wear off soon) and enjoyed spending quality time together.  Thanks dad, Angie, and mom!

Mommy, you slept for how long? Did daddy change your diaper? It must have been soooo full!

The girls have now started eating fruits and love them, Tony tries to give them strawberry twizzlers and apple danishes -- not fruit but we have found a way to reduce the number of diapers they need.

Environmentally conscious.

Huggies you can eat and poop in. Ew.

They eat a fruit and bottle at lunch time and a veggie with cereal and a bottle at dinner.  You think they would be sleeping longer.  No such luck.  They all get up multiple times a night.  They usually only want to eat once but want us to have to get out of bed to return their pacifier to the mouth pat their butt for a minute then they fall right back asleep.  This process is repeated way too many times.  They are too little to do any sleep training so if you have any other suggestions for us please, please let us know! Tony points to pictures like this and says, "sleep":

Notice the white angelic light when she sleeps!

Brielle is going to have a GI scope done on Thursday.  We are hoping that they will find something so we can find a solution on how to make her more comfortable.

I'm trying to make a spit bubble, almost!

Helping each other with their homework!

Oh, picture!

Tony demonstrating how men can come over and help!

We pretty much always celebrate 3 birthdays at a time in this house!

Nic from Kansas City is our first male volunteer!

Fred Hoiberg addresses Hilton before selection Sunday

Brielle's so happy for the Iowa State Men and Women and the Iowa Women's Basketball teams

Teagan hears they play UConn in the second round

And Kentucky, the overall #1 seed after that! Ouch!

Halftime Post - Hawks beat Illini, IA State goes down to Texas, decides to rest before March Madness

I'm sick. Mindy's sick. I just went to the doctor for a routine physical to give me the 'all clear' for surgery and I had some upside down t-waves on one of the anterior leads. Since I've never had an EKG before, he has nothing to compare it to, so sometime next week I'll be doing one of those stress tests on a treadmill. I did eat Chicken McNuggets without taking off the skin when I was a kid, worked at Wendy's fast food and I've gained a lot of weight since the kids were born, but I've recently lost a few (literally, a few = two) pounds, just put them back on with Keebler fudge grahams, but both Mindy and I are perpetually exhausted but here are a couple of blurbs about our little miracles.

We got some great news for Brielle that we can move her down to 1/4 liter from 1/2, that's a big progress note as we move her off of oxygen one day. Mindy read that during teething kids get worse GERD (that's like worse grammar) so hopefully one day Bri will just keep smiling like she does in the mornings.

I know that whole thing about Ellen was totally fake, but this was real, I met and shook hands with Woz, for those of you that don't know, Steve Wozniak, co-founder of Apple!  (It's a big deal for us nerds!)

I did submit a 1500 character email (the limit) to Ellen asking for her to call Mindy. Here are the 1500 characters:

Mag Toxic: My wife Mindy, hospital bedridden with a pink bucket she no longer has the energy to lift her head and vomit into,  with a catheter draining urine to her bedside, last night nodded to voluntarily slam herself into oblivion by having Magnesium Sulfate go into her veins, to stop her contractions, then watch as they increased the dose, delay the preterm labor at 19 weeks, allow time for cerclage on her incompetent cervix, her glazed eyes and matted hair sandwiched between two ice bags used to lower her temperature, she whispered, “I feel like I’m going to die,” as the mag fought the calcium, giving her the uncontrollable shakes, my wife told me that 1 in 3,000 dies in childbirth, I don’t know if she’ll survive, she looks like death, all I can think is how far I married above my station.


Bed Rest:
At least you're not an elephant. They're pregnant for 22 months.
Did you fart? Does it smell? Yes. Then yes, I did fart.
Is baby A still kicking you in the vagina? No, now the rectum.
Did you just pee on me? No, just did that one night I was on the mag.
I see pregnant women everywhere. So? They're standing.

NICU:
Places the pumps on her breasts for 20 minutes. Freezes bottles. Showers. Goes to the hospital. Does the babies' cares, kangaroos, meets with the nurses, doctors, pumps, repeats, loses one more day she can't be with her kids at home for 11 weeks.

Now:
She works full-time and it would mean so much for her to just get a call from Ellen saying, "Good job Mindy"

So I try to get Ri to say her new word and she says it once.

Here is take two.

Does someone need a hug?

Teagan pseudo-crawling. They all like to roll over now.

So cute. Actual head size.

View from next to Teagan. Proportionally, if Teagan is 2 feet tall, and Mindy is 5'4", then to Mindy a person from this angle would be about 16 feet tall. Now wonder they freak out sometimes!

Teagan really wishing she was 2 feet AND 2 inches tall

I'll put you in bed when you finish your bottle.

Steve Wozniak at iWeek today at DMACC West Campus

I got his autograph!