Want to have a chance to speak your mind about your experience having a preemie and how it has affected your life, your marriage and most importantly, your preemie? Here’s your chance to take a confidential survey that will educate others. Your preemie must be 4 years or older in order to participate in this study.

Please contact:

Deborah Simmons, PhD, LMFT
preemiestudy@comcast.net

Feel free to let me know if you decided to take the survey. I just completed mine!

Indeed, Very Happy Holidays!
I am writing this blog entry while at my in-laws as we help them celebrate the Christmas holiday. My in-laws have been super understanding about the fact that we are currently status quo with Becky and eating issues until we meet with the Developmental Nutritionist. They made her special pasta for the holiday dinner and everything. Truly kind and truly understanding. I realize so many people with preemies are not that lucky. My hope is that in future years, Becky will be able to increase her variety of foods so that this is not an issue. With some of the OT side of things already at work, I am already starting to see some interest food-wise here and there, so hurray Becky!

Go Go Go Becky!
Also on the big news front, Becky decided on her own to go without a Huggies Goodnite and instead slept with only panties. YAY! She is now almost 3 weeks and without any issue. To say that Gregg and I are proud of her is an understatement. Big Girl!

Cough, Cough, Cough Oops!
The holidays though, have brought up one nagging issue. Every time Becky gets over a cold, a nasty dry cough remains. She is totally hacking away at night and it seems nothing will help. Last night I attempted to give her Albuterol as a last resort. As she was inhaling she must have had some sort of reflux issue and next thing I knew she projectile vomited all over the bed. The poor kid! Gregg and I are thinking it may be time to explore the reflux issue again to make sure it is not at work on her system again and also working against her with the cough (which we have begun to wonder if it is truly asthma or not) and also with feeding issues. This is not new to her but we had thought this had resolved itself when she was a little over one year old and well past the preemie side of things. Has anyone had this? I would love some feedback!

Update on the OT Side of Things
Well, we started up the exercises with the Body Sox, the hot dog roll exercise, balance balls and more. Sadly with my father having a hospitalization in the last couple of weeks and the holidays changing the schedules drastically, we have found ourselves failing miserably on that front. I am planning to re-schedule the Occupational Therapy appointment so we can get more time to help Becky progress.

Update on the Nutritionist
We are looking forward to the first conference call with the Developmental Nutritionist at the end of January. Until now, it is status quo until we have that program in place. I really hope that this helps! It has been such a help to talk to other Moms through Preemies Today (www.PreemiesToday.com) so I don’t feel like I am being neurotic about all of this. Apparently I am so not alone here and that is reassuring.

WAY COOL! Zakeez (www.Zakeez.com) is donating 100 FREE Zakys to babies in the NICU. Email yamile@zakeez.com for more information!

Though I have not watched an episode of the Duggar Family reality TV show, I have seen their website over the years as each baby was born and more. With the latest news of Mrs. Duggar giving birth to a 1 lb. 6 oz preemie I found myself first focusing on Mom and baby and hoping that the NICU roller coaster is as smooth as can be for a baby that tiny. I have already heard all sorts of comments about calls for them stopping having babies and such. The reality is that no one goes into pregnancy thinking “I want to have a preemie.” This is not a club you willingly join. It is one that you literally get shoved into beyond your control. It is terrifying, heart wrenching and not something I would wish on my worst enemy. I am hopeful that all preemie parents out there will give this family the love and support they need right now despite potential preconceived ideas about this family’s theories on childbearing. There is a baby’s life at stake and that should be the only focus right now. Any other discussion is purely a distraction.

Deb and I are excited to share the great news: We have new products coming in-house here very soon.

First off is our “Preemie Parent’s Survival Guide to the NICU” – a book that we both poured our hearts into to help other parents literally “survive” the preemie and NICU experience. Full of information, wisdom and humor, we give parents what they really need in the NICU – a guidebook. Our goal is to sell single copies but also to do bulk sales to appropriate organizations.

We’re also excited to announce that our PreemieWorld “Baby Safe Pack” is imminent as well. In our special partnership with Hallcrest, makers of thermal thermometers, we have created a special pack full of items for parents to use with their child to keep them safe from fever, U-V rays, too hot baths and more. This is a great tool for parents as they leave the NICU and take the baby home. Again we’ll be selling packs separately and in bulk to appropriate organizations.

Interested in learning more? Sign up for our mailing list on the front page of our website: www.PreemieWorld.com While you are at it, also sign up for our free print newsletters as well.

So last week’s visit with the Occupational Therapist went well. Overall Becky continues to progress and that is fabulous. However, she does have a number of sensory issues at work and we are not done yet with the full work-up as there is another session tomorrow. In a nutshell, Becky being born a preemie has resulted in some ongoing sensory integration issues. Her balance, body awareness, and movement is extremely off. That explains why Becky had no interest in riding a big girl bike but preferred the low-to-the- ground tricycle instead, if that. It also explains the issues Becky has had with falls at school at pick-up time for the carpool.

And then the OT was super blunt – Becky’s diet is really limited and a great concern. I agreed and she noted that we needed to get Becky to a Developmental Nutritionist immediately. While Becky has oral sensory issues it appears that we will also need the nutritionist to help stimulate her interest in a variety of foods. In more ways than one, I was relieved. Becky’s limited diet, though I am super thankful she has not been on a g-tube because of this, is a real challenge at home and when we are out. Many people tried to tell me it was because she was 6 years old and to stop worrying. Others have tried to “fix” her. All of these comments and interferences have annoyed me to no end. It is my hope that through a nutritionist we can get Becky the real help she needs and within time to start to move past this matter altogether.

I am definitely nervous about visiting the Occupational Therapist or OT tomorrow. About a week ago I went through a sensory profile questionnaire she sent me to fill out on Becky’s behalf. It was hard going through it as well as filling out all sorts of information about my pregnancy with Becky and discussing her preemie birth and NICU stay. While I know in my heart that I did everything I was supposed to during the pregnancy, it just plain stinks to have to have people ask so many questions and to have to fill out so many forms time and time again just to help my daughter in whatever way I can. And as I went through the profile I could definitely see where there are sensory issues to address. The question is – does Becky have full-on Sensory Processing Disorder? We’ll see what happens tomorrow. Wish me luck.