Sunday, February 8, 2009

You Might Be the Parent of a Preemie If....

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...

*You measure everything in cc's

*Luxury = sleeping three hours in a row

*You can change your baby's diaper with one hand

*In the course of the same day, you have wanted to slap and bear hug the same NICU nurse

*You feel a secret pull of jealousy when one of your friends delivers full term

*You have gotten a rash on your hands from washing with hot water and the NICU soap... eight times in one day

*The statement "breastfeeding is simple and natural" makes you laugh -- or cry, depending on the day and the hour.

*Your baby has ever outgrown an outfit... while s/he was wearing it.

*You cry when you're happy, laugh when you're mad, and throw things across the room when you're sad.

*You could drive the route from your house to the hospital in your sleep... and maybe you have.

*You can't remember what you talked about before feeding schedules, diapers, and growth charts.

*You're more interested in your baby's diaper than the State of the Union

*Your idea of a vacation is walking outside to get the mail

*When someone offers you their hand to shake, you think twice, envisioning the germs that you might take home from them

*The sound of your baby crying is beautiful, not annoying.

*While everyone else coos, "He's so tiny!" your six-pound baby looks huge to you.

*Your heart almost bursts with love at least once a day

*You would climb to the top of Mt. Everest, barefoot, if it would help your baby to grow healthier, bigger, or stronger.

*You not only know what "bilirubin" is, you have had several extensive conversations about it.

*You never knew how grateful you could feel that your baby has gained an ounce.

*You know where all the vending machines are on your floor of the hospital... and which ones have the good snacks.

*You literally live your life one hour at a time.

*The security guard at the front door of the hospital just waves you in when he sees you.

*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.

*When someone asks you what scent you're wearing, you say "Germ-X" without batting an eye.

*You had to give up your shower today to make time to read this list.

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Tuesday, February 3, 2009

Do-Do's & Don'ts

I found this article online, thought I'd share....

Talking to Parents of a Preemie Baby
By Menetra D. Hathorn, author of A Mother's Diary: How to Survive the Neonatal Intensive Care Unit

Advice on what to say and do (and avoid!) when your friend or relative has a baby in Neonatal Intensive Care Hospital (NICU).

What's more disheartening is that even after we go through all of the explanations, it often seems that the listener's response is still a perpetration of some myth or misperception about preemies. Perhaps the most popular one is, "How much does she have to weigh before she can come home? 4 lbs.?" I heard this several dozen times while my daughter Rayven was in the hospital. She spent the first three moths of her hospital stay on a ventilator (A breathing machine) which meant she was incapable of breathing or eating on her own, so it didn't matter if Rayven weighed 4 lbs. or 14 lbs.! She wasn't coming home!

Please don't fall into this trap. It took all I had not to roll my eyes and lecture my inquirer because of their ignorance, and this is only one of the many pitfalls to be avoided. Because there are so many, I have included a long list of do's and don'ts to help you.

1. Don't judge the parent's reactions. There is no right or wrong way to deal with a premature birth.

2. Don't compare the baby's needs to those of a full-term baby OR to other preemies.

3. Don't just say "Call me if you need something." Do something! You can provide dinners, do yard work, go grocery shopping, offer to drive them to the hospital, and/or clean their house.

4. Be available when parents ask for help. If we ask for help, that means we needed it a long time ago.

5. Don't discuss the possibility of death or severe complications unless the parents initiate it.

6. Be inconvenienced. Helping someone should not always be bound by our comfort zones and busy schedules.

7. Buy appropriate gifts for the family, such as disposable cameras, calling cards, rolls of quarters, snacks, magazines, photo albums, journals, scrapbooks, and gift cards.

8. Support and praise a mother who is pumping breast milk during the baby's hospitalization. If is very difficult to maintain a milk supply when the baby is unable to nurse directly from the breast.

9. Baby-sit free of charge if the parents have older children. You can do this so parents can visit the hospital together or go out on a date.

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Don't ask "when is she coming home?" The parents want eth baby to come home too, but there are no quick fixes in the NICU. Besides, they will let everyone know when the time finally comes!

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Don't offer too much unsolicited advice.

15. Show interest in the baby and the parents throughout the hospitalization and after the baby has been home a while.

16. Make sincere compliments about the baby whenever you're visiting the hospital or looking at photos.

17. Don't compare their experience with someone else's hospitalization.

18. Offer a hug when the parents are expressing grief.

19. Avoid discussing disappointing news or concerns within hearing distance of older siblings. The older children are suffering as well.

20. Nicely recommend that counseling be sought when parents show signs of losing control.

If you have already done a few of these "don'ts", try not to worry about it too much. Most parents understand that it's difficult for you to know exactly what to say and do.

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Wrestling Masks & Rules

Loads has happened since my last update- but it tends to happen so quickly, almost hourly, that it is nearly impossible to stay up-to-date with my journaling. Grace has grown leaps-and-bounds, although she's had her share of minor roadblocks and set-backs. Grace is such a big girl now- I can hardly believe this is the same baby! She's growing so quickly, I wish there was a pause button that I could us. I promise I wouldn't go overboard!! Grace is so "there"- she's fully aware of my presence, and this has been amazing for our bonding experience. As soon as she hears my voice, she turns her head, relaxes or cries for attention. Her personality is bigger than she is- she absolutely cannot stand a dirty diaper, and loves to be held! She lets all of the nursing staff know EXACTLY what she wants, when she wants it.

Grace is off the ventilator- HALLELUJAH! It was so exciting to hear her muffled cries for the first few days. The ventilator goes down the throat near the vocal cords, not allowing them to vibrate, so we didn't hear from our little one for a very long time. Now, her cry is up to full volume, so she sounds like a normal, precious little baby. Grace is now on a CPAP (I have no idea what it stands for!!) which is like a little wrestling mask/head gear that goes over Grace's nose and provides her with pressurized support. Later today we'll be going back to the nasal canula- this is a HUGE step for Grace, she's making slow and steady progress.

Grace is now in a big girl crib!!! She is out of her isolette, which means she is able to regulate her own temperature. Her due date was Sunday, so she's on target for this development step. The hospital has let us use the most adorable mobile- a little rainforest one that sings classical music- Grace loves it!
Grace got her first real bath since her surgery yesterday- she was so smelly!!! We had to actually pour baby soap directly onto her feet and let them soak to get rid of the funk smell. :) She's had so many bandaids and monitors strapped to them that they don't get to breathe, so they stink up to high-heaven! Crazy thing- I actually like her stink.... that's a whole nother' story though!

Grace is a poopin' machine- that is one stink I DO NOT love! It amazes me that such large, stinky masses can come out of such a small, beautiful girl. I am constantly changing diapers for our little one. Today, when changing a normal poopy diaper I discovered some blood in her stool. Because of her past history with NEC, the staff is concerned and they are going to run a panel of tests: xrays, samples, etc. She doesn't seem like she did when she had NEC so I'm hopeful that it's just the aspirin that is rough on her tummy.

On a better note, both daddy and I, grammy Pammie and Oma have gotten to hold Ms. Grace- such an amazing experience! She is so much more aware of herself and us- it's really something to hold her.
I made a tough decision today- vaccines.... I've read both sides, listened to both sides and decided that I would have Grace vaccinated. It made the most sense for us- she's already got a cardiac problem, and if she were to develop something it would be life-threatening if not definitely fatal. I'll take the risks over not having Grace around. Some people may not agree with my decision, and that's okay, but it was right for us at the time. Grace will get her diptheria,tetanus, hep B, measles, mumps, rubella, pertussis, Hib, Polio and Pneumococcal Conjugate- whew! What a mouthful!! Not only will she be getting these vaccines, but Felix and I and anyone who will have close contact with Grace will be asked to get vaccinated every 10 years with their diptheria, pertussis and to be sure their MMR vaccine is up to date and present in their blood system. I have become the mom that I used to make fun of- but it's just not worth the risk for my little girl. I refuse to let her live in a bubble, but I also have to control some of her environment. I fully expect my little girl to run, jump, fall, hurt herself, break ankles, etc. but I don't want to be responsible for something as silly as whooping cough. Make sense?

I have officially been in the hospital with Grace now for 2 months- I went home for the first time in a very long time the other night and it felt so weird! The house smelled off, it didn't feel like home and I had an awful time trying to sleep there. I think it will be important for me to spend more and more time there as we get closer to going home, so that I feel home again, making sure Grace feels home. I have lived in the RMH now for over a month- I've befriended the staff, know the other residents and try to stay in the loop about their children- it's an entirely new life.....

I've been looking to join some kind of support group- it's almost like trying to make sense of a triple whammy: adopting a baby, having a preemie, and having a special needs cardiac baby. I can only imagine how others must feel around me- I wouldn't know what to say to myself four months ago! Felix has been a saint- he adores his little girl and makes sure to tell me what a great job I'm doing, and that helps, but I miss my girlfriends. I know people are nervous about getting Gracie sick, or about what to say to me, and I completely understand. As much as I want visitors, I also have to limit the exposure to her until after her next surgery- that will be the big one, and she has to be big and strong for it. One of the NICU moms that I've met through this experience actually posted rules for visitors once they got home- seems anal, but I TOTALLY get it! Like I said, I wouldn't even recognize myself four months ago- I'm so different through this experience, but I think it's all for the best- I'm a mom now!

Here are her rules:

Because her immune system is still not mature it is super important that we take extra precautions to make sure she doesn't get sick at all.

1. So if you have been sick at all, please wait at least a week before you come visit.

2. Also, no one under the age of 16 can handle her until after RSV season ends although they can visit as long as they are healthy.

3. And last, but not least, absolutely everyone has to wash and/or sanitize their hands often.

Not so bad, right? :) Hope this finds everyone with health, happiness and love! Grace sends kisses- very wet kisses!

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