NICU Terms D - G

More terms that you may here being thrown around on here or in a NICU or when referencing a preemie....

Again taken from ttmf.org

Developmentally Delayed / Disabled
A term used to describe infants and toddlers who have not achieved skills and abilities which are expected to be mastered by children of the same age. Delays can be in any of the following areas: physical, social, emotional, intellectual, speech and language and/or adaptive development, sometimes called self-help skills, which include dressing, toileting, and feeding. Many developmental delays can be overcome with early intervention programs.

Early Intervention Program
Planned use of physical therapy and other interventions in the first few years of a child's life to enhance the child's development. Connecticut's Birth To Three program is an early intervention program.

Echocardiogram (“Echo”)
Ultrasound picture of the heart. This is a painless, non-invasive procedure that takes accurate pictures of almost all parts of the heart. Many preemies have a cardiac ultrasound if the doctor is looking for evidence of a patent ductus arteriosus.

Endotracheal Tube (ETT or ET Tube)
Tube placed through the mouth or nose into the throat and the child's trachea (windpipe). This tube provides a secure pathway through which air can be circulated to the lungs.

Extremely Low Birth Weight (ELBW)
A baby born weighing less than 2 pounds, 3 ounces (1,000 grams). Also known as a "micropreemie." See also Very Low Birth Weight and Low Birth Weight.

Extubation
Removing the Endotracheal Tube (ET Tube) from the baby's windpipe.

Gastroesophageal Reflex (GER)
Contents on the stomach coming back up into the esophagus, which occurs when the junction between the esophagus and the stomach is not completely developed or is abnormal. GER is very common among preemies. In some babies, reflux can irritate the lining of the esophagus and cause a form of "heartburn" which causes them to become irritable and uncomfortable. Mild forms of GER are common, require no treatment, and go away on their own over a period of months. However, it is necessary to evaluate how severe the GER is and whether or not it requires treatment.
Treatment of GER may include keeping the baby upright, thickening of the feedings, giving medication to reduce stomach acid, and sometimes giving medication to increase the ability of the stomach to contract.

Gavage Feeding
Feeding a baby through a nasogastric (NG) tube. Also called tube feeding.

Parker had GER as well as ELBW - he was exactly 1000 grams (or 2 pounds 3 ozs at birth) Parker was also fed through a gavage...for a while actually, because of his GER.

The Preemie Reality

Have you ever had one of those days where things are going great and then all of the sudden one thing changes your mood? Yah, well, me too, and that was my Friday.

Friday I got a call from P-town's* occupational therapist. She is a sweet lady and has been following Parker's development since day one! We went in a few weeks ago for his most recent follow up appointment and she was impressed with how well P-town was doing. He was in the average points value for his adjusted age! That's good! But she was concerned with his muscle tone and how he has a tendancy, ok, not a tendancy, but a almost consistent way of tensing his legs and body. Now, don't get me wrong, he can bend his legs, arms, ect, but more often then not, he will tense up while sitting, standing (he does this with support) and such. For example, most babies, when they sit, will sit with their legs bent in some way, Parker automatically puts his straight out and tenses them. Anyways, like I said I got a call from "K" friday, she was reviewing his file and writing his letter to Dr. D and to "S" our Help Me Grow case worker. She said that she wants him to be evaluated and start some physical therapy for a few months. It's really to help with his tone, but when I heard that, I became negative Nancy and worrisome Wanda and now I am in a mood.

For whatever reason, I can't seem to get out of the haze that is my Nancy-ness and my Wanda-ness. If I really think about it, this isn't that big of a deal, he's not getting speech therapy or physical therapy because he can't walk or something. It's just to help him loosen up and such. I should be happy and thankful that he has this opportunity, but the Nancy in me is thinking it's the end of the world and that my son has issues and the Wanda in me, well she's just a pain in the rear! She has me thinking that he will never be "normal". What a liar that wanda can be! And the Denise in me, the Denise and me knows that hey, this is the reality of a preemie, some have more challenges than others and I am thankful that his seem to be little in comparison to other preemies out there. The Denise in me know that this is my reality now, my focus, the focus of other's is helping Parker to be the best he can be and to catch up with his actual age.

The reality is this: preemies face challenges, big and small. Some preemies spend time on oxygen, some have heart problems, some need speech therapy, other's deeper physical therapy. It's the life of a preemie parent to focus on you child, head to appointments, remember you child is only "this" age developmentally, ect. The reality is, our children, our beautiful preemies are special and require more care than children born at full gestation. My hubby's brother was born with many physical disabilities and his mom and dad's reality was taking care of a son who was confined to a wheel chair, with few words, a little movement and had many many hospitalizations. Like them, I have a reality too, the reality that, my son is small for his actual age, is viewed as an (almost) 11 month old, but developmentally is 8.5 months old, he requires more "work", he has 1 tooth and he will be one next month, he takes meds daily...ect.

That's my reality - I am a preemie parent - A PROUD ONE! I love and adore my son. Of course I wish that he had been born in August and that I didn't have this reality, but can't change that. God blessed me with a son born 11 weeks early, a son that will require some more attention. Most days, I feel blessed and humbled by this reality, some days though, like friday, I feel cursed. I cry sometimes realizing that this is what I will be working with for a while, but the truth is, Parker WILL catch up and years down the road, I will be able to tell him his story and share all that I was able to learn. God knows what he is doing and why, I just need to trust that. God has taught me lesson thus far and I can only imagine what He has planned for me.

Parker - if you read this many years later, know that I am honored and blessed to be your mommy. I love you more and more each day. I am only human and I have unfortunately human emotions that can challenge me. I am proud of you an all you have overcome in these past almost 11 months and I can only imagine how much you will overcome and accomplish many years down the road. You teach me every day, you make me smile and you are worth it all!

I really hope this post has not come out insensitive or whiney or negative to any of you. I certainly didn't mean it that way. I think it may be a way for me to vent, to let my emotions work themselves out. I am thankful that Parker has not had some of the challenges he could have and I certainly do not want to make those who do think I have it worse, I know I don't!

Just a reminder, our March of Dimes walk is this Sunday, there is still time to donate! Click the purple box on the right side bar to donate!!!

*P-town is turning into Parker's newest nickname thanks to my friend Amber! I have been saying it more and more recently!

You're Guilty?!

I recently started reading a book called, "Motherhood: The Guilt that Keeps on Giving" by Julie Ann Barnhill. I have been wanting for a while now, to read some books about mommy guilt and motherhood and being a confident mom. When I came across this book at the library, I was pretty excited. Not only was a book on mommy guilt, but the writer is a Christian mother! Woohoo! All I know is I am the GUILT and WORRY queen! And if you are anything like me you probably understand the mommy guilt you go through daily. It's a never ending climb to get from what Ms. Barnhill calls "Mt. Guiltmore" to "Graceland." (no we aren't talking about Elvis' graceland.)

At the beginning of the book, the author asks the reader to write a list of things you are not guilty for. Which, honestly isn't easy...I sat in bed last night thinking of my list....It took me a while to come up with a list...and the list...is pretty miniscule compared to my guilt list. I want to share my non-guilt list with you....

Things I am not guilty for:
- Hugging and kissing Parker as much as I can each day.
- Telling Parker I love him all day, every day.
- Praying for Parker daily!
- Encouraging Parker in his development (on a side note - he rolled over from back to belly yesterday for the first time!)
- Not being scared to call the doctor when I am unsure of something
- Allowing Parker to listen/watch certain shows on tv (Noggin is my friend!)
- Snuggling him
- Being honest about my beliefs as a mom, woman, human
- Attempting to make dinner nightly while Parker plays.
- Giving Parker certain boundaries
- Taking my son to church and leaving him in the nursery
- Loving Drew and taking care of him.
- Letting Parker sleep with a blankie, his Mr. Bear - Webber, having toys in his crib, music playing, lights on if he needs it.
- Making Parker's baby food and making funny faces at him while he eats.

I am sure my list will get longer as I get through this book, but I think this is a pretty good list. Compared to the list of things I feel guilty for (I am going to only do a partial list as if I were to do more....you'd be here all day.)

My guilty list:
- Having him get his vaccines and shots (not because I don't think they are good for him, but because they hurt him and he cries.
- Having him early
- Going through depression
- Going on on dates with Drew
- Holding other babies
- having a drink here or there
- Not bathing him daily (we do it ever other day because of his super dry skin)
- Hiding in the walk in closet when i can't take his crying anymore.
- Not playing with him more
- Not being able to afford more things for him
- Not having his actual bedding set I wanted for him.
- Sometimes wishing he wasn't a preemie.
- Him having acid reflux
- The fact he had to sleep on wedge for the 4 months
- Biting his finger one day when I was pretending to eat his hand
- His eczema
- Wanting to go to Cambodia on a missions trip with my church and leaving him here
- Leaving him in the nursery for the very first time
- Going out with friends and leaving him here with daddy or with a sitter
- WAnting to go on a trip with just some girlfriends - no kids.
- letting him suck his thumb
- Not taking more videos of him
- Feeling guilty for being overweight, not healthy, and not getting off my lazy behind.

You get the point. I really think my guilt started when I first found out I was pregnant. I felt guilty for not knowing right away and continuing to drink Coke like it was going out of style. I felt guilty for all the family illnesses I had to explain to the doctor. I felt guilty that I wasn't prepared. Feeling guilty for working a lot, feeling guilty for wondering if I really could eat lunch meat (subway was my addiction during pregnancy).

Guilt tends to consume my days and a lot of times, that guilt takes over and becomes worry. One example, the first time we took him out...I felt really guilty for it, he got a cough because of it - hence worry took over and I was convinced that doctor was going to take him away for me for taking him out and him getting a cough.

Guilt stresses me out, it burdens me, it bothers me, it can make me sick. I really need to work through this guilt, though I don't plan that it will every really go away, but I would like to get to a full understanding of grace land and God's grace.

So what about you....do you go through guilt as a mom, what would your lists look like?

I plan to write more as I read the book and learn more.

Hard Times Lead to Joy!

Imagine if you will, you are pregnant with your first child and you are so excited. You have it all planned out...you know how you are going to organize everything, where everything goes, how their room will be decorated (once you are out of this tiny little one bedroom you are in!) and how you plan to bring them home...oh the utter joy and excitement.

BUT THEN

You're thrown a curve ball. You begin to get ill, very ill and you are in pain, a lot of pain. Before you know it, you are about to make the hardest/easiest decision you have EVER made. Your life will never be the same. Your child is born 11 weeks early, he is a tiny little guy, only 2 lbs. And you, you are in ICU, tube down your throat, horribly ill and completely unaware of what the next 2.5 months of your life will be like.

This was my reality this past summer. It was the quite honestly the hardest time in my life this far. I figured, if I could get through my parent's divorce, the death of a mentor, the death of my best friend...surely I could get through anything. But for the first time in my life I honestly did not think I could make it through this. How on earth would I ever get through the fact my son, my first born, was born 11 weeks early and so so tiny. Add in the fact that I had him Thursday and didn't get to see him until Sunday because of how ill I was.

This is what I saw on the first day I saw him:

He was the smallest thing I have ever seen, so fragile, so tiny, so perfect. How on earth was I this fortunate? But how on earth would I survive the next xxx amount of days he would be living in the NICU?


My life had turned upside down. I was not only ill and recovering from an emergency c-section as well as help syndrome. I was now thrown into this universe that is so completely different then anything you could imagine. I don't even know how to totally describe life in a NICU...it's surreal and scary all at the same time. Every little hurdle jump leads to another hurdle, a bigger hurdle and just when you think things are looking up, just like the snap of a finger, it can change. I became a hermit...daily spending at least 6 hours beside my son's bed, learning the tricks and trades of dealing with a tiny little baby. I became a wealth of knowledge on medical terms I never would have known. I learned how to change out heart monitors and helping to put Parker's CPAP back on and how to sponge bathe this little thing. All the while, attempting to hold it together and hiding in our little corner, curtains drawn, snuggled in a chair.



The estimate they gave on the length of our stay was basically that this little guy would be in the NICU at least until his due date...I couldn't even imagine that. My summer became all about Parker. Wake up, eat breakfast, pack my bag, head to hospital, park, walk to elevator, down the hall, sign in, wash hands, turn corner, eye Parker's spot (B4, then C4, then A13) grab nurse, update, find chair, pull curtain, curl up in chair and just stare. 6ish hours later...home, dinner, tv, sleep...repeat. That was basically my summer. Occasionally I would attempt to do something like shop or get coffee (well in my case, tea or chai) but every time I did that, I felt guilty that I was enjoying myself while my son laid in the hospital.

May became June became July....that's when we had our first "date" of bringing Parker home. However, things changed, eating became a challenge, poor baby had terrible acid reflux. Eating was a challenge, feeding was harder because it just hurts to watch your child struggle. But soon....we found things that helped...Zantac...and a wedge. Within a week of being on the wedge, the 3rd best day of my life came.



AUGUST 5, 2008
-the 3rd best day of my life....(next to Aug. 6, 2005 - my wedding day and May, 29th 2008 - the birth of Parker)

I woke up a hot mess. I was thrilled, excited, scared, nervous, sad, happy. I took the fastest shower of my life (I have since learned, you can shower faster). This was it, the day we were waiting for for 69 days. Drew and I got in my car (my poor poor car...it went to car heaven about a week later!) grabbed a bite to eat at Burger King and swiftly got to Riverside. We pulled out the stroller and headed up for the last walk up to the NICU. I was a ball of nerves. I was thrilled that Parker was finally coming home, but I was terrified.. I no longer had heart rate machines to count on, I no longer had a doctor around the corner or a nurse in the hall to run to. I had to trust my own instincts and take care of this boy without a hospital room around. We got up to his room, everyone was thrilled for us, but sad, because our little critter had become a NICU favorite, NICU pet if you will. We hugged anyone we could, signed paper works and packed up his room. Sadly, we couldn't use a stroller to take him out, so Drew took all the stuff we had accumulated out to the car and packed it up. I stayed with Parker and prepared him for his ride home. We sat him in his car seat...you can't even imagine how tiny he looked. We said our final goodbyes and out we went, accompanied by a nurse who pushed him out for us. (Security!) We savored every moment....his first elevator ride, his first time outside, people said bye as we walked out. I cried tears of joy...this was it...my baby was coming home. No more long walks to the NICU, no more machines, no more privacy issues. He was fully in my care, he was coming home, I was finally a full time mom. We drove home so carefully, talking, laughing, my in the back with Parker shooting pictures and video. Parker, the excited little 5lbs guy he was slept the entire time. We got home and parked in the parking lot. This was it, the 2nd best walk of my life. I got Parker out of the car and took his seat and we walked, up the stairs, around the corner and in the door. He was home, finally home....and my life, my life was complete!








Epilogue
I seriously don't think I have had a more exciting day since and I never would have imagined that I would enjoy such a simple thing. Last summer was, truly, the hardest time of my life, but bringing Parker home, made it all worth it. The past 5 months haven't always been easy, but I am so thankful for every moment I have spent with Parker. I said earlier in this post that I made the easiest/hardest decision of my life on May 29th. I say that because, yes, it was easy to say, "let's save this baby and me by getting it out" but it was so hard because I knew that I was having an emergency c-section, I was going to be completely under because I couldn't have an epidural for the safety of Parker. I knew I would be in the hospital longer than a normal c-section patient and I knew that Parker would be tiny and in the NICU for a while. It was so easy because I didn't want to die and I didn't want to lose this child, but is was so hard, because my life would change. I remember laying in the bed crying realizing what was about to happen. It was then that I decided I would cherish every moment I had with Parker. God taught me so much last summer and I learned the strength that I have. I am so thankful!

And now it's your turn....head over to MamaKat's and choose your own prompt to share. Make sure once you post it on your site, your go back to hers and put in your Mr. Linky.


The Prompts:

1.) Tell us about a memorable blind date.

2.) Other than the birth of a child or your wedding, write about a joyous moment.

3.) Write about one of the most difficult decisions you have made in your life.

4.) Share the best picture you took last month and explain why it's your favorite

Oh and btw I chose 2, but kind of covered 3!

Writer's Workshop

It is time, once again for MamaKat's writer's workshop! Today's prompts are:
The Prompts:

1.) Describe a New Year's where you would have been better off just staying home.
2.) What do you do that drives your mother crazy?

3.) Share your favorite gluten free recipe (hey, so what if I rig the topics to suit my life...)

4.) Close out 2008 with your own TOP 10 list!

Stop by her site for all the rules!!!

Top 10 Things I Learned in 08
(these do not relate to Parker/birth/pregnancy)

10. I make one heck of a turkey!
9. I learned that I should not attempt to open a bottle of wine! (Then again, maybe it was because it was the first time I had!)
8. I am stronger than I give myself credit for.
7. I can shop on a budget!
6. Aldi's was made for me!
5. I am addicted to made for tv movies (Hallmark and Lifetime anyone!?)
4. I am in love with blogger! I should have started a blog like this forever ago. Blogger rocks...no more xanga for me (well except to read those who still have it!)
3. I am addicted to blogging, reading other blogs, and doing things like writer workshop
2. Never put your milk in the back of the fridge (it freezes - or at least it did for me!)

And the number 1 thing I learned in 08, not related to Parker is.........
God is and will always be good!

Top 10 Things I Learned in 08
(these ARE related to Parker/birth/pregnancy)

10. I still hate hospitals!
9. Even if you have needles stuck in you every three to four hours for 5 days....NEEDLES STILL SUCK and hurt and I still want to gag when I see them.
8. Sure, that porcelain throne in the restroom looks all shiny and fun, but it is, in fact, not fun to have to stare into the bowl of it over and over and over!
7. God gave us doctors for a reason...and they care about me and my son...that's cool.
6. I am not alone in having a preemie and I am so fortunate to have made many friends who understand this battle!
5. More comes out then what goes in...seriously....how does one kid eat SO much and still have 4 times that amount come out. Of course, that could also be related to his reflux...well no, cuz it doesn't come out the bottom end like that :/
4. I love pregnancy clothes, seriously, they are stinking comfy!
3. Babies should REALLY come with manuals. (especially when you start solids...)
2. Parker has the best daddy in the world.

And the number 1 thing I learned in 08 related to Parker

I am SO blessed. I have an amazing son who means everything to me and I can't believe the amount and kind of love I feel for him.

Now it's your turn, go on over to MamaKat's site and get started. You can pick all or one of the prompts! Enjoy!

Oh and HAPPY NEW YEAR!!!! 09 is looking fine!

Riding the Vomit Comet

There is a reason that I tend not to wear super nice outfits anymore and that when at home, I would much rather be in pjs or ratty old clothes....The Vomit Comet. It never fails, I could be cover in plastic and Parker would some how get his spit up all over me. He has such a knack of missing anything between him and I that isn't my clothing and getting spit up all over me. It never ever fails. Today, I was sitting here holding him and he spits up, now granted, I wasn't being super protective of my clothes, I was having too much fun making him laugh while he sat on my lap facing me. As I sit here making funny noises and faces and he laughs, he burps...and before I can get the burp cloth, you comes the vomit comet. And of all the place for it to fall in on me, right in me "area". Yup friends, you guessed it, I looked like I had peed myself. How this kid can get spit in the most unusual of places. On time, he almost got in my mouth (maybe we shouldn't have been playing airplane - oops).

I really wish that someone had told me how much comes out of these children that God creates. How is it that a ton more comes out then what comes in? It's some weird force of nature, I tell ya! If I had a dollar for every time Parker spits up, I would be a rich rich woman. Now, Parker, though, I should note, has a severe case of acid reflux, so his spit ups are large and very frustrating. It used to cause so many problems that he would want to eat, but hurt the entire time and cry. In fact, when I brought him home in August the first two weeks made me feel terrible. I couldn't stand that it hurt him so bad. I would feed him and cry the entire time. Now, things are significantly better, still not "normal" if there is such a thing, but a ton better than it used to be.

Parker is awesome though, seriously!




Just look at that little guy. The picture with Trooper is his 6 month shot and the other is one of my favorites of him, I love that look of, "uh hi mom, you caught me!"

**Please continue praying for Terry (OP) and his family and friends. His memorial service is sunday, so I will be leaving town Saturday after choir practice and coming back monday. I am not really looking forward to driving 4 hours with Parker, but he tends to do ok in the car. I think it's the fact that I am going home for a reason that isn't so fun. Thanks!

Prayer Please

Can you all just take a moment and pray for me? I am not entirely sure what is going on, but I am just kind of at wits end and the end of my rope right now. 

Also, can you pray for Parker. I am not entirely sure what is going on with him. I am sure that part of his problem is recovering from the trip as I am not surprised if he feels a little off, but recently, like with in the past week, at night, he becomes mr fussy. Screaming and not being able to really be soothed. I don't know if maybe he is teething or what. He acts really hungry and so I feed him, he starts to suck and screams as if it hurts. I wouldn't be surprise if there may be some teeth coming in (I don't see anything at this point!) Also, it seems his reflux has flared it's ugly head again (well it's been around, but it seems to be bad again).

This is all really frustrating me because when we went to the doctor last time, he wanted us to make sure Parker ate no less than 70mls and wants him to be up to 90mls, he is a bit behind on gaining..(not a large amount) so it's frustrating because all of sudden he seems to not want more than 50 or 60 most of the time. But I don't want to force him to eat and then have him throw it up, ya know? I just don't know what to do, I don't want the doctor to yell at me for Parker's eating issues. I don't know...this being a mom thing is so hard and confusing sometimes. I mean, obviously I want to do what the doctor says, but at the same time, I want want to hurt Parker in the process. I think this might be where instincts take over...after all I am his mommy and know him better than anyone. I had to trust my instincts in the hospital and that always helped...

Just pray for me, Parker, us as we work through this! I am convinced that baby's should come out with their own personal manuel.