Wednesday, July 30, 2008

How do you turn it off?

Momdar is an unexpected gift - or maybe better described as a side effect - from having a baby. It is the ability that allows you to hear every squawk, grunt, sigh, cry, scream or coo your baby makes all the time. Mom Radar is very primal and the instinct is (well, at least it seamed so for me) developed overnight after the baby is born. Momdar is a useful tool, the precursor to modern electric baby monitors. But unlike the modern baby monitors which broadcast to you and anyone else listening the noises of your offspring and can be turned off, Momdar allows only the mother to hear sounds even when the baby is not within reasonable listening range and can only be turned off after said child has moved into their own home some 20 to 30 years from now.

It doesn't seem to matter if your baby is accessible to you as in the case of my boys being whisked off to the NICU. This new super human power is activated, and I think the Momdar is maybe heightened by the fact that you can't have access to them should your baby be in the NICU. This is what prompted me to call the NICU at 2am most nights.

An example of Momdar's power would be like being in the shower upstairs and your baby on the first floor of your house with the TV on, the radio on, people talking, the trash truck passing by, and dogs barking and you can tell your baby is crying and has been for longer than you'd like. It's when you wake up in the middle of the night so certain that the baby was crying when they haven't. It's dreaming that the baby needs something and you have the uncontrollable need to get it now so you get out of bed and do it, losing precious sleep just because though they aren't crying now, they might need it later. It's the never feeling comfortable with anyone, even your own awesome family who've been helping you all along, because unless you are right there nothing will seem good enough to make the baby happy. It's the startling awake. Every. Fifteen. Minutes.

Add to that the oxygen compressor noise, the edginess of listening for an apnea alarm and a pulsox alarm, two babies crying and it's a very busy place in my head.

Tuesday, July 29, 2008

Sad little scale

I got on the scale today and it was a bitter sweat moment. I was 145lbs pre-pregnancy. Two days before delivery at 28wks 4days I weighed in at 189 with the twins. Today, four months after delivery, with absolutely no real exercise, attempting to do a dairy free diet (and failing miserably), and exclusively pumping breast milk for the boys, I am now weighing 156lbs.

Why bitter sweet you ask? Because I should have been closer to 200lbs with the twins and so I should have had a whole lot more weight to take off. There's a silver lining right?

Shoulda, coulda, woulda... ::sigh::

Sunday, July 27, 2008

You know you're a preemie parent when...

I'm hijacking this from a couple of preemie sites I visit only because they are so very true. A few at the end were added by my online preemie friends Gymrat, Mrs. Peterson, and KellyMichelle from The Nest Feel free to post in the comments your own addition to this list:

If this list looks familiar, you might be a parent of a preemie baby! We have to laugh about it to keep our sanity! :)

You know you're a preemie parent when... (not in any particular order)

  1. You measure everything in cc's
  2. Luxury = sleeping three hours in a row
  3. You can change your baby's diaper with one hand
  4. In the course of the same day, you have wanted to slap and bear hug the same NICU nurse
  5. You feel a secret pull of jealousy when one of your friends delivers full term
  6. You have gotten a rash on your hands from washing with hot water and the NICU soap... eight times in one day
  7. The statement "breastfeeding is simple and natural" makes you laugh -- or cry, depending on the day and the hour.
  8. Your baby has ever outgrown an outfit... while s/he was wearing it.
  9. You cry when you're happy, laugh when you're mad, and throw things across the room when you're sad.
  10. You could drive the route from your house to the hospital in your sleep... and maybe you have.
  11. You can't remember what you talked about before feeding schedules, diapers, and growth charts.
  12. You're more interested in your baby's diaper than the State of the Union
  13. Your idea of a vacation is walking outside to get the mail
  14. When someone offers you their hand to shake, you think twice, envisioning the germs that you might take home from them
  15. The sound of your baby crying is beautiful, not annoying.
  16. While everyone else coos, "He's so tiny!" your six-pound baby looks huge to you.
  17. Your heart almost bursts with love at least once a day
  18. You would climb to the top of Mt. Everest, barefoot, if it would help your baby to grow healthier, bigger, or stronger.
  19. You not only know what "bilirubin" is, you have had several extensive conversations about it.
  20. You never knew how grateful you could feel that your baby has gained an ounce.
  21. You know where all the vending machines are on your floor of the hospital... and which ones have the good snacks.
  22. You literally live your life one hour at a time.
  23. The security guard at the front door of the hospital just waves you in when he sees you.
  24. You are grateful for the smallest things now -- a shower, clean socks, a meal that you didn't have to cook, a friend who has a whole conversation with you without offering you any useless advice.
  25. You had to give up your shower today to make time to read this list.
  26. You either startle, or cannot hear alarms going off, anymore.
  27. Sentences consist of abbreviated words like NICU, CPAP, CC's, NG, NJ, NEC, RSV, ROP, BPD, CLD, A's&B's, Pulsox, desat, and Epo shots.
  28. Every time you stop at a store you pick-up more hand sanitizer and it is in every room of your house.
  29. Anything you drop on the floor, must be washed.
  30. Anytime you buy food, like 2 pounds of ground beef, or a bag of flour, you compare it to the size of your child.
  31. You feel like no one understands how you feel (except you preemie ladies).
  32. You constantly take your babies temperature, even when your home.
  33. You are obsessed with the show Birth Story on Discovery Health, especially if there is a story similar to yours and it makes you cry.
  34. The show Baby Story no longer seems realistic, but you secretly fantasize that your next birth and pregnancy will go like that.
  35. When someone asks how old your baby is, it takes 15 minutes to explain and usually turns into a huge story about your baby's birth.
  36. You know how many cc's equal one ounce.
  37. You are jealous of women who had a normal pregnancy and angry with women who say they want to have their baby now, when they are 28 weeks.
  38. Kangaroo care is not a show on Animal Planet, is the best time of your day.
  39. The day your baby got to come home was the happiest day of your life so far.
  40. You are your baby's advocate and you are constantly having to defend what you are doing and why, and educate others ~ all. the. time.
  41. You have a lot of "NICU souvenirs"
  42. You still use a "care time" schedule even when you are home.
  43. You and your husband fight over who gets to change the diaper and who gets to take the temperature.
  44. The NICU phone # is on speed dial.
  45. You had your baby shower after your babies were born.
  46. You no longer watch any of the baby shows for fear you'll have a breakdown.
  47. You're jealous of any pregnancy that made it into the 3rd trimester.
  48. You know how to change a diaper, bathe, and feed your baby despite the many cords and tubes in the way.
  49. You know the schedule of the nurses that take care of your baby.
  50. You feel guilty about doing the simplest things without your baby (eating, sleeping)
  51. You make friends with the other parents of NICU and watch out for the care of the other children when they are not there.
  52. You have expert knowledge of the benefits of a rented hospital grade pump.
  53. You are proud to have the largest supply of breast milk in the freezer.
  54. You had to go out and buy a deep freezer just to store all the pumped breast milk you have pumped that your preemie(s) can't eat yet ~ And it's full already!
  55. During pregnancy you worried about taking even something as simple as Tylenol and how it would effect your baby, then you start pre-term labor and are on more drugs than you've ever seen in your life!
  56. When you walk past the regular nursery you can't believe how giant all the babies are.
  57. You know that, unlike in school, A's &B's are not something you want your child to have.
  58. You get two newborn phases, the first is in the NICU and the second is when you bring them home and for another two months you are still feeding the baby every three hours.
  59. You have a team of medical staff visiting your home every week including an RN, OT, PT and EI specialist.

Friday, July 25, 2008

Happy Birthday Timmy!

I can not believe it!

This guy is

When Tim was born in 2000 this is how the world was....

1. It was the "new millennium" - Y2K - Computers crashing, oh no!
2. It was the year of the Dragon (very fitting for Tim):


The Dragon is omnipotent. He/she is flamboyant, attractive and full of vitality and strength. In China, the Dragon is the sign of the Emperor of China or the male element Yang. The Dragon is the symbol of power and wealth.

It would be right to say that people born in the year of the dragon have a natural charisma and are certainly gifted with power and luck. It is unlikely for them to escape unnoticed from a party or to take second place in a competition. The dragon person has an active mind and shows an unfeigned interest in the world around him/her. This person is also self-confident enough to know how to create a necessary impression. Because they are larger than life themselves, dragon people like to do everything on a grand scale. They are egotistical self-aggrandizing and ambitious, almost to the point of megalomania. They will stop at nothing to get what they want. A person born in this year wears the crown of destiny, and is capable of great achievements if he or she knows how to harness his or her tremendous energy, intelligence and talent. While these people enjoy being the center of attention, they also have a brave and charitable side to their personality. If a dragon's friend faces a problem or dilemma, he or she will be there to offer help, and when others leave the field of battle the dragon takes a step forward to solve the problem with authority and dignity. Dragons set a high standard of actions for themselves as well as for other people and are surprised when others cannot cope with a task; they are so carried away by the process that they fail to see other people's weaknesses.

Ideal jobs for dragons include kings, military officer, politician, musician, buffers, poet, artist, biological and environmental engineer, stockbroker, athlete, trade union leader, company director, explorer, and attorney.

The Dragon is most compatible with the Rat, Monkey, Snake and Rooster.

3. It was a leap year starting on Saturday.

4. It was the year of a controversial presidential election between George W. Bush and Al Gore.

5. Prince William, future King of England, turned 18.

6. World famous WWE wrestler The Rock became a movie star.

7. The human genome was deciphered.

8."Who Let the Dogs Out?" was the #1 single. Who? Who? WhoWho!

9. Top kid movies for July of 2000 were "The Nutty Professor 2", "X-Men", "The Kid", "Thomas and the Magic Railroad", "Chicken Run"

10. Kids books that came out in 2000: "The one in t middle is the green kangaroo!" by Judy Bloom, "Max's Dragon Shirt" by Rosemary Wells, "Train to Somewhere" by Eve Bunting & Ronald Himler, "My Teacher is an Alien" by Bruce Coville and Liza Ross, "Fa Mulan: The Story of a Woman Worrier" by Robert D. San Souci

11. The coolest nephew ever was born!!

So to Tim, the first and oldest of PopPop Bob and MomMom Judy's grandkids, we raise our glasses of soda and toast to you: To the man who rocks a wicked mohawk, my favorite haircut on him of all time, and who will be teaching his new cousins all the goofy tricks he has up his sleeve, we wish you a Happy 8th Birthday Tim!

Wednesday, July 23, 2008

Progress Report

UPDATE #1: Two weeks ago we took Evan to the Ophthalmologist for his follow up appointment to make sure that his left eye was still on target to develop normally. We were worried that there might be very slight Retinopothy of Prematurity.

What is Retinopothy of Prematurity (ROP)?
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. ROP was first diagnosed in 1942.

During Evan's last check up it seemed that the blood vessels in his left eye weren't developing in a normal way and so the doctor wanted to wait and see if he just needed more time for the eye to develop. The good news is that his eye is perfect and there is no reason to think that ROP will be an issue for him at all. Both boys have been cleared of the concern for ROP and will have a standard follow up in six months.

UPDATE #2: On Friday last week we took Cameron for his one month follow up with the pulmanologist in Rockville. At these appointments they measure how well Cameron's oxygen blood saturation level is (that's the little red light you see strapped to a preemie's foot or wrist in NICU photos) while on the oxygen as a base line. He was at 99 to 98% which is exactly where you want him to be on oxygen. Then they took him off the oxygen completely and he continued to saturate at 95%. The acceptable unassisted saturation range is between 93% and 98%.

This is excellent news!! This means that we have the official okay to begin weaning Cameron off the oxygen.

This is how it will happen: First we have to hook up a pulsoxymeter meter to his foot or wrist to see how well he's saturating his blood with the oxygen he's breathing. Then while he's sleeping we'll turn off the oxygen for a couple of minutes. We then watch the pulsoxymeter to see if he drops below 93%. We will try to do this 3 times a day as long as he stays above 89%. If he goes below 89% frequently we will put him back on the oxygen and wait another week and start trying all over again. If he does well and stays above 89% each time for a day then we call the doctor's office and give them a progress report. At that point they will determine if we can lower his oxygen down from 1/4 liter over an hour to 1/8 liter. If we do that and he starts struggling again then we have the discretion to increase him back up to where he's comfortable at 1/4 liter. This will most likely happen during feedings or when he's asleep because that's when a persons breathing is the most shallow.

The doctor said again that he's doing very well, not fantastic because he's not gaining enough weight, but doing respectably well. He still feels that Cameron will be off the oxygen in the next month or two.

Keep your fingers crossed!!

Next Update: Our Maryland / Prince Georges County Infants & Toddlers Early Intervention Evaluation coming up on 7/23/08.

Friday, July 18, 2008

Oh the air we breathe!

Lots of people have asked about Cameron and what life is like having a baby home on oxygen and an apnea/bradychardia monitor. In particular the questions revolve around what equipment we have, how it works, and how we are able to get around the house and out in public with him. I thought it would interesting for people to know how this all works, and I've included some photos to help.

I explained in a previous post introducing the boys, preemies will often need the oxygen assistance that is already damaging their lungs in order to survive. This can cause pulmonary bronchial dysplasia and/or chronic lung disease. Cameron just needs 1/4 of a liter of oxygen per hour to get by; a puff of pure oxygen. Eventually his body should grow enough so that it will grow new lung tissue faster than the oxygen can damage the existing tissue and we will wean him off the oxygen.

At our first visit the pulmanologist said it's really up to Cameron and how well he grows but he felt confident Cameron would only be on the oxygen for about another two months, but I'm thinking it will be three because he's a "lazy white boy" as they say in the NICU. :- p

In the NICU we had the option to get the dexamethasone steroid shots for him but this steroid so controversial that we opted to do that only as a last resort. Our pulmanlogist felt that we made the right decision. He said that he will only suggest dexamethasone if it's life or death and even then there are lots of waivers and acknowledgments to sign before it's used.

Is the equipment difficult to use? No, it's really quite simple, once you get over the initial worries and become familiar with everything. There are only two buttons on the monitor and the oxygen tanks and compressor are either on or off.

Here's the apnea/bradychardia monitor.

It's about 5lbs with a bag on the side where we keep extra sticky electrodes, lead wires, and a pen and paper to write down the details of each instance when Cameron has either a brady or an apnea. Bradys or bradichardias are when his heart drops below a certain rate. Apneas are when his respiratory rate drops below 60 breaths per minute based on his size. Some of the irony in all of this is that you're not supposed to have strings or wires or tethers near an infant or toddler longer than 7 inches as they are a strangulation hazard. But out of necessity for Cameron's medical needs we have both our boys around tubes and wires much longer than 7 inches all the time.

The oxygen:
Our main source of oxygen, and what Cameron is tied to most of the day, comes from a machine called a compressor that actually creates oxygen and is electric. It's about 2ft tall x1.5 ft wide on wheels with a small distilled water tank that humidifies the air. This is really heavy, maybe 50lbs? and we keep in in the nursery where the baby spends most of his time. The compressor is loud with a constant rumble and it generates a lot of heat so we have trouble keeping the boys room cool. The compressor sucks in room air and strips everything out of it and pumps the pure oxygen down the patient's tube to the nasal cannula in is nose. This has a 32 foot tube to the baby so we can go from the baby's room across our 6ft hallway and into our bedroom about another 10feet to the Pac n' Play crib. It's funny, but everyone always takes a deep breath once the machine has been turned off.

The little portable tanks for traveling we have (M6 I think they're called and we have 8 of them) are no bigger than a large champagne bottle with a thermal bag over it and weighs maybe 8-10lbs?? Which is a pain when you're carrying a 7lb baby plus the apnea monitor. The portables can last up to about 12 hours at 1/4 liter of oxygen. I can't remember how long the large emergency tank will last but I know it's at least 16 to 20 hours because that's what they told us when they delivered it.

Lastly we have one tall skinny tank on wheels, the kind you see the old ladies with in Vegas or Atlantic City. This is our emergency backup if we lose power for an extended time so we can call and they will come out with more tanks for us if we need.

What other issues are there to having Cameron on oxygen? Camerons lungs are inflamed and filled with fluid making it difficult to breathe even with the oxygen assistance. To work around that he has to take lasiks to flush out the fluid. But the catch is that it also flushes out the needed sodium in his body. So he gets 2ml of sodium chloride (aka salt water) in his bottle three times a day. This does not make for a tasty bottle.

Is it difficult to get up stairs with the baby, apnea monitor and oxygen? It's awkward and it's good to have an extra pair of hands until you get the hang of it without feeling like you're off balance.

Is it impossible to go out of the house with all these things? This is how we go out in public with Cameron in the stroller (and Evan too). It's really the only way to go any distance with him since his gear and the car seat and the diaper bagand he are all very cumbersome.
We get cabin fever often and because it's a hot summer season we've made a point to get out at least once a week for things other than Doctors appointments . We have it down to an art getting the boys places. It helps to have a stroller with a very large basket underneath.

Other issues I didn't expect about having an infant on oxygen:

  • It's very difficult to tape the nasal cannula tube to a tiny, squirming, angry baby. I've watched the nurses do it a thousand times but they make it look easy.
  • Bath time is tricky with the cannula tube and it's a good idea to have extra helping hands.
  • It's tough enough with twins so you need to be very organized and coordinated but when you have one on oxygen, even a singleton, you really need to be very coordinated and organized with your travel distance, schedule for the week and tank supply.
  • Don't have open flames in the house (no birthday candles) or put vaselene or petroleum jelly on the baby as it's a conductor if ignited by spark. I know, you're thinking why would there be a spark near the baby? I have no idea, but the guy who trained us on all of this said a spark can ignite the oxygen and petroleum jelly is a conductor for the flame and so now I obsess over sparks too.
  • The compressor really heats up the room fast and is really really really noisy, so much so that it's a deep silence when the thing is turned off.
  • I miss my living room and other parts of the house, but if you don't mind lugging everything around with the baby from room to room then it's not impossible. I spend most of my day in the nursery taking care of the boys, but it's not all because of the oxygen. It's just where they are and where their stuff is, so we spend lots of time there. I hope to begin exploring our house with them more soon, especially once Cameron is off the oxygen.
What to I dislike more, the apnea monitor or the oxygen? Hands down the oxygen is the bigger pain to deal with. Besides which, once the oxygen assistance is gone then soon after the apnea monitor will go too!

UPDATE EDIT: I often refer to my good friend from PreemieParent's blog "Parenting in the NICU" for many subjects and this is one of them. Here's the link to her post on having a child on oxygen that you may find very useful.

Saturday, July 12, 2008

My first child: Chewie

This is Chewie.

He is our first fur-baby. Chewie is an Akita / German Shephard mix that we adopted in March of 2004 at 7 weeks old. He is about 96 pounds of hammer-headed stubborn dog. He is sweet and smelly and really loves people.

He has trained my mother so well, she doesn't even realize she's working for him! The best is when he works in tandem with our other dog Bridget the Catahoula. While I was on bed rest every day I would watch the canine antics. Chewie will sit in the middle of the stairs and look out of the tiny window portals of our front door. He will look down at his sister Bridget and give a deep woof. Bridget will then go to my mother's bedroom door and scratch until she comes out. In baby French my Mom will ask what's wrong and Bridget will walk to the front door or the back doggie door whining. That's when my Mom will open the front door (aka Chewie's television with one channel to chose from) and then escort Bridget to the back deck so she can go potty. A very clever way to turn on his television.

Chewie knows when Drew is coming home before he even turns down the street. We don't have many visitors to the house, and yet he knows the difference between close friends and family members vs. acquaintances and the medical staff that come to the house to help with the babies. He is so empathic, always knows when you're having a down day and will come to snuggle and press his face against yours. He knows when you've really hurt your self vs. when you kind a hurt your self but are making a big deal out of it and he will console you accordingly with more love and affection for those times when you really hurt yourself badly. His favorite toys are his Nylabone, his latex rubber mailbox, and an empty milk jug with the cap still on it. He loves to bite the caps off of plastic bottles. They're so good.

One of Chewie's worst habits is that he nibbles on our bed quilt. I have no idea why he does this and we can't get him to stop!! Chewie also has strong aspirations of being a lead sled dog contestant in the Iditarod race. Digging random holes in the backyard is good fun because the rain collects and makes puddles for him to stomp about in. He loves both the cold and the hot and demonstrates this by having pink under-fur skin and being frisky in the winter, and black under-fur skin and being really laid back in the summer. He will bake in the 95 degree sun for hours with all three coats of dark fur until your hand hurts just to touch him.

He has one sworn enemy in this world: Dozer, an unfixed, extremely well trained Anatolian Mastiff that lives two doors down from us. Chewie is certain that guy is nothing but trouble and they yell insults to each other every night back and forth across our fenced yards. Full moon nights are especially fun when all the other neighbor's dogs, plus our other dog Bridget, join in the chorus.

Babies used to be nothing of interest for Chewie. One time (not at band camp) we were in Annapolis on a hot summer day eating ice cream by the dock. A lady walking by plopped her infant right in front of him without so much as a glance at myself and Drew to see if this would be okay. We held our breath, we didn't know what our dog would do. This had never happened before. Would he paw at the baby? Growl at it? They were barely eye to eye and the little one was reaching for the big guy's fuzziness. Thankfully Chewie took a sniff and looked the other way. We let out our held breaths and thankfully the lady saw our look of concern and picked the baby up again.

Now the only babies Chewie is interested in are the ones keeping him up at night. Especially Cameron who's either more dominant than Chewie or Chewie is more attuned to his medical situation and is worried about him because of his health. Either way, Chewie always comes running to check Cameron out when he cries.

Right now Chewie is at the bottom of our stairs, with his head cranked back at what looks to be a very unpleasant 45% angle pressed into the bottom step, and his legs flopped up on the bottom step dangling in the air. He's in doggie nap time heaven. That is until the mailman stops by, Cameron lets out a whail, or Dozer gets his walk.

Sunday, July 06, 2008

Happy 4th of July! Preemie Adventure #2

Happy 4th of July!

First let us start off by thanking Auntie Kirsten Stone for our totally awesome personalized bibs! They are way cool and now the boys can't fight over who's bib is whose.

This weekend was not the best weekend to show the boys their first holiday outside since coming home from the NICU. It was too hot, rainy, muggy and fireworks can scare the begeesuz out of a preemie. So we stayed in.

On Friday we did try our first trip to Arundel Mills mall which went very smoothly and no weirdo questions from anyone. Thankfully it wasn't crowded at all. We don' mind the standard ones, but some people will ask some odd questions. I am getting used to covering the car seats with blankets so people can't get a good look at the boys. It makes me feel like they're on display, and they both have their own issues that are glaringly obvious. This also works to keep them from being overstimulated with the sights and lights. It also keeps them warmer, which has a downside because the mall isn't well air conditioned and we were all burning up, especially in the stores with their overabundance of lighting.

Our adventure out wasn't that big a deal but more of a way to fend off some cabin fever without the kids coming into close contact with too many people. It was nice. But I do have a complaint to retail store owners everywhere. Stop putting random odd shaped crap in the aisles on the floor!! Sure it might be decorative but damn if it isn't a PITA to get around the store. There were so many stores (Pier 1, Kirkland's, and Carter's are major offenders) that have narrow cluttered aisles that we couldn't get 10 feet into the store. And I know my stroller is really really long, but it has a really great turn radius and is only as wide as our bathroom doorway and we still couldn't get down most aisles. It's really nice to set the store up with those walkways all akimbo with islands of tables and displays in random places but it's impossible to maneuver around. And it's really sad because all I could think was some person in a wheel chair can't shop comfortably in these places because they can't get even as far as we can with our stroller because a wheel chair is wider than our stroller.

Anyway, that won't stop us from perfecting our going-out-abilities. It really is a production to get out the door. Once Cameron can get off his oxygen we'll all breathe a collective sigh of relief (pun intended) because one major hurdle every day and all day is how to get around with his tubes and wires. If we could just eliminate the need for the oxygen assistance we'll be a thousand times happier. We're constantly trying to figure out how much portable oxygen he has, how long that will last, where we can go that won't be a breathing issue for the babies (try shopping for large area rugs with a baby in tow).

All in all it was a nice afternoon out. It will be a few more days before we try another one.

I hope everyone had a pleasant and inexpensive holiday weekend!!