The Rewards of Parenting

So I am currently addicted to this new show, Parenthood, on NBC. It follows the Braverman family As they each deal with different aspects of parenthood: The Mom and Dad - dealing with their kids/grandkids, Adam and his wife Kristina who's son was just diagnosed with Asperger's and a daughter who's going through the teen angst, rebellion stage; Sarah who just moved back to the area with her two teen children, living with her parents, trying to start over; Julia and her husband Joel - he's a stay at home dad, she's a lawyer and her daughter and her don't really connect well and Crosby, who just found out he has a 5 yr. old boy.

This last episode, Crosby and Adam have a heart to heart about why parenting is rewarding and what if you don't feel something for your child. I loved it and it made me think about what feels rewarding to me. But first, here's the scene - WARNING - there is one cuss word used.



What makes parenting rewarding to you? To me even?

I came up with just a brief list of what's been rewarding for me...in the past almost 2 years.

- He knows I am his mama! Seems simple, but sometimes I don't allow myself to feel that. I can remember very distinctly one day when I went into the NICU and Parker had had a bad morning - within minutes of me being there and having my hand on his back (even at that tiny 2 lbs stage and just newly born) his numbers improved and his breathing got better. That was one rewarding moment. For all the stress of the couple weeks he was in there at that point, that moment, knowing that MY SON knew me and calmed down - that was rewarding.

- Each new milestone! I think most parents would think this is a rewarding part of being a parent, seeing your child(ren) hit a new milestone. For me, I think it goes deeper. I was so concerned for most of the past two years that Parker would never catch up and be "normal", but man each time he hit a milestone - whether it was walking, talking, eating, ect - the rewarding feeling I felt was unmatchable. Even today, as he sat with his speech therapist and she said he had at least 2 months left, I felt rewarded knowing that though he is "behind" on his speech, he is meeting his goals they set.

- Watching them accomplish something! As a parent, we teach our children how to be good people, do everyday tasks and for me, it's rewarding to see when Parker gets it. Today, he put on his own pair of pants, granted, he had trouble pulling them up and he had put both legs down the same pant leg, but still. I left the room to grab some lotion and came back to find him mostly dressed in his pants. Something that I feel like I have talked to him and shown him at nauseum he is know wanting to do and doing on his own.

I love being a parent, and while there are times it's hard (recently - it has been) the good far outweighs the bad. Sure, Parker has his days of anger and tantrums, and his nights filled with night terrors and little sleep and his disobeys and pushes my buttons, but when it comes right down to it - I AM SO GLAD I AM HIS MOMMY! It's so rewarding, even in the hard times and for that, I am so grateful.

I am blessed! So blessed!

A New Outlook

To say that I have a lot of bitterness built up inside about Parker's birth would be an understatement. For as much as I consider myself "over it" and moved past it, I still harbor a lot of anger that his birth happened the way it did. I know, to you, it seems kind of pathetic that I would harbor these feelings, but I think there may always be a part of me that is a little upset with God "allowing" this. I am human after all and I do hurt and I am not perfect.

However - I am starting to get a whole new outlook about it. Was it easy? Um NO! Was it fun? Ha - right. Would I want it to happen again? Nope But the reality is it could. I am at risk, but a maybe slightly lower risk. But I do have a new outlook - it was a lesson in putting full trust in God that I will never forget. I had to let go and let God control the situation. There was simply nothing more that I could do. I had to let go and trust that God would be with those doctors as they took my son out of me and whisked him to the NICU. I had to let go and trust God to give the appropriate knowledge to the Neonatologist, doctors and nurses that worked on Parker and took care of him in the NICU. It wasn't easy. Especially once I was able to see him. I wanted to wrap him up in my arms and hold him forever...be his protector, his doctor, his nurse, his everything, but I couldn't. Besides the fact that I don't have the degree or the knowledge needed, I had to heal myself.

There's been this empty time in my head since Parker's birth. I can remember VERY clearly up to when they gave me the anesthesia. I remember very clearly that last things I heard before I feel into a deep sleep - "I will be here with you the whole time." A nurse named Mary said as she held my hand and I drifted to sleep. I remember hearing voices while in the ICU, but I don't really remember seeing people until my in-laws go there later Thursday evening. There's a few hours that I will probably never know about. The one thing I always wanted to know was what happened during my c-section. Did Parker come out crying, limp, ect? What would it have been like had I not been under general anesthesia? I do know Parker came out crying and kicking - a ton. My OB/GYN has answered that one. He was a little fighter from the get-go. But what about the rest of those unanswered questions? I don't think I will ever know 100% what it was like in the operating room. Drew wasn't in there so he can't answer that for me...but I did have a small glimpse.

On Jan 31, there was a special on TLC. It was called "Special Duggar Delivery" and it was about the birth of their 19th child, miss Josie Brooklyn. She came at 26 weeks and was a 1lb 6oz miracle. You may not like them or agree with their lifestyle, I don't always agree with their views, but for me, to start a total healing process I had to watch this episode. I DVRd it and waited until I had the time to watch it, no interruptions, me allowing myself to feel and watch. I ended up not sleeping well that night and woke up at 2am. I decided to watch it...mostly because I couldn't sleep because I wanted to watch it so bad. I sat and watched it. And let me tell you, it wasn't easy. They showed Michelle's C-section and you know what...it really helped me. I put myself on that operating table and it helped me see kind of what happened during Parker's birth. To see how fast it went, how quickly they got Josie out, how fast they got her to the NICU - I knew in my heart, that's what they did with Parker. And I am thankful for that.

My outlook is changing about this. I will never be thrilled that it happened - who would? But I can learn to look at it now in a positive frame of mind. It strengthened my walk with God, it gave me the most beautiful miracle child, it brought people into my life that I may not have known otherwise, it showed me how a church can love it's members, it showed me that I am way stronger than I give myself credit for. I have been blessed with being able to get to know other preemie parents and helping in their journey. I have learned to really cry out to God. Sure, there are still some negative feelings towards it and to be honest, for as much as I want another child, I am TERRIFIED of this repeating itself. But I know, that God is always here, He will get me through another hard pregnancy if that's what it would be, He knows what's gonna happen in the future, I don't.

I can honestly say, I am thankful that my son was born 11 weeks early. I wouldn't be where I am today if he hadn't been. To look at him now, sitting on the floor, talking to the TV, smiling at me and laughing loudly - it was all worth it. Every single part of this journey has been worth it.

Thank you God for a new outlook!

....Thy Name Is....

Failure thy name is Denise...

OK before you start going off on me and telling me how wonderful of a mom and wife and friend and yadda yadda I am, hear me out on this one... ok. I promise it starts off rough, but gets SO much better.

For several weeks (ok so maybe my whole life) I have been feeling like a failure. A failure as a mom, family member, wife, woman, Christian...I could list more. I could make a list of all the things I am convinced I have failed at, HOWEVER, I won't. Mostly because you don't have the time to read them all and also because, they aren't important, especially past things. Most recently though there have been 3 areas and which I have felt like a colossal failure.

1) Parker - I can see you sitting there now about ready to beat your head (or perhaps past that point) on the desk. Bare (bear?) with me. Where he is concerned, because I care THAT deeply, I feel like I fail on a daily basis. This past weekend was one of those areas. My sweet little man had, yet again, another wheezing episode. On Thursday last week, he became congested. Paying close enough attention I noticed that he was coughing - ding ding ding - a light went off - I remembered that this is actually a first sign of potential wheezing....I albuteroled the heck out of him Thursday. Friday he sounded great, no real cough, so I didn't worry - until the evening. That's when the big coughs came - again...friend thy name is albuterol. Saturday morning the poor boy woke up a hot wheezy mess. I called his pediatricians office knowing full well that it was a Sat and I probably would get a co-worker of his normal dr. We went in, sure enough....my ears did not deceive me. *Feeling of failure comes in here* The Dr. whom I thought was REALLY awesome talked to me about how I did the right thing, and how we would start Parker on FloVent (a preventative breathable inhaler) and OraPred (oral steroid - know as to me - Parker's hyper happiness) and that we wouldn't need to go to the ER. (Side note: all the way to the dr. I was convinced I'd have to take him to the ER). I asked her about 4 times if she was SURE I wouldn't need to take him to the er. Nope she said. Ok sure. I told her that I felt so happy that I had gotten ahead of if for the first time and that I really though there would be no wheezing this time around and she said that I had. (Ok then why the wheezing huh?) With his lungs being as premature as they were it's not surprising that even though I was really vigilant he still wheezed. It's the nature of the beast.

I left feeling both relieved and worried. We got home and Parker's wheezing got worse. I call the Dr. back (feeling of failure #2) and asked what to do (I actually called my friend Crissy first...thanks for listening to me that day - Love you!) She said that again, I had done the right thing, calling her (she seems to know I need reassurance) and that we would put him on albuterol every two hours for 6 hours (that would be three doses before bedtime) to give both the Flovent and the orapred the ability to really get in his system. It worked! I was thrilled and those failure feelings left.

So that's the most recent "issue" with Parker and failure coming into play. Today's feeling of failure - my son too much TV (P.S. he's currently napping - I don't have him watching the Boob Tube). He actually doesn't get that much. He gets an hour of Sesame street after nap. And maybe 1-1.5 hours the rest of the day spread out. (The kid must watch Yo Gabba Gabba before bed....and I am ok with that, because by the time it's over, he's read to sleep.)

2) Keeping house
I am not gonna lie, I hate housework. I hate everything about it, but I hate my house being messy - imagine that. I think sometimes it feels pointless to clean. Like yesterday, I worked REALLY hard on cleaning the kitchen. It looked pretty (needed to sweep and mop but with my head cold, I just couldn't continue past what I had done.) and nice. I made dinner - and now, it's destroyed. Again. Ugh. Oh and the living room. Toys toys everywhere. Ugh. I feel like a failure in the house cleaning area. Maybe if I wasn't sick it would better. Oh who are we kidding, it wouldn't make a difference, I just have zero cleaning motivation.

3) My weight.
I am overweight. There - I said it. I know I am, I know I have been and I have a REAL TRUE desire to lose weight. If I can lose weight I should be able to have a healthy pregnancy again (when we are ready...and want to try again - READ I AM NOT PREGNANT) and I think I would like myself better. I want so bad to go on Weight Watchers or something, but I stress about the money and the doing it and the keeping the motivation part. Ugh. I hate it. I feel like such a failure in the weight loss area.

satan they name is snot

I mean really! I have had a head cold/sinus infection for a week now and I don't really feel too much better. I am still blowing my nose every 3.5 seconds (ok I exaggerate). I have used mucinex, sudafed, tylenol head and cold and I swear I am still so friggin clogged. I hate this and am convinced satan lives in my sinus' and is named snot.

Speaking of the red dude. I know that he is why I feel like a failure. He plays on my insecurities, my fears, my doubts. If he didn't know me so dang well and left me alone, I know that I would feel better. It gets frustrating, because I do try to not listen, but it's hard ya know? I am thankful that I have grown so much since P's birth because I truly believe that time and the growth afterwards has helped me to learn how to overcome satan's lies. Now, don't get me wrong, I am not perfect and there are times I listen to them, but a majority of the time, I am fine or I can notice them easier and get myself into a much better frame of mind.

So yah.

I think I will let you go....

Post thy name is long.....

(P.S. sorry for my obsession with the phrase "thy name is."





****Please note that I say "I Feel Like" not "I Am A" Failure! I am learning to not allow what I feel to constantly rule my life and me!****

A Glimpse

There is no way that I could ever completely share with you how it felt to have Parker at 29 weeks. I can sit here and say the words, scary, sad, worried, guilt, anger, terrified....but unless you actually experience for yourself what I and many others have been through, you can't know. I can tell you the story over and over again....with all the dramatic affects and pauses, but again, unless you experience it yourself...you just can't completely get it.

I am sure most, if not all, of you know who the Duggar's are. If not, then go here: Duggar Family. Their most recent addition is little Josie, born at 27 weeks, due to severe preeclampsia, by emergency c-section. (Pretty much my circumstances, except I also had HELLP SYNDROME.) Well, on Sunday, Jan. 31st TLC will be airing a special about the birth of little Josie. Now, obviously I haven't seen it, so I am not 100% sure how they will portray the situation, how they will handle it, what they will show...but even in the previews you can see the complete fear and sadness on Jim Bob's face, so I am sure they won't hide the seriousness of it and the complete fear and sadness one must feel during these situations.

I encourage you to watch it. One reason why is, because while things were different between what I went through and what the Duggar's went through, the basic raw emotions were the same. Also, I want you to understand that this is something that happens daily. Premature births are on the rise and I want you to be aware of this.

Please consider watching it....I am working up the strength to watch as even the preview makes me cry and want to just turn the TV off.

It is on TLC and will be Sunday at 8pm. For more info go here: Special Duggar Delivery

Journal Journey Wednesday (pt.2 & 3)

***Just so everyone knows, this one will be a bit longer since last week I totally had a brain fart and didn't post! Enjoy - though if you don't read it all - I understand!***

June 14, 2008

"There are days I miss being pregnant. It kind of hurts to know that I'll never have that big belly, the inside out belly button, labor pains, or a vaginal birth experience. I think I really need to mourn this reality - so I can move on and focus primarily on Parker. I need to go home and pack up my maternity clothes - it's hard to walk in my closet and see them hanging there. I also am gonna get rid of my pregnancy books, just seeing them makes me sad."

June 15, 2008

"Happy Daddy's Day!!! Great news, Parker is off CPAP! His numbers are staying up great right now. He has had a couple of brady's but bounces back quickly"

June 16, 2008

"Went to church last night and boy am I glad! I really needed it. I didn't feel bombarded with people or questions, though I talked to so many! I enjoyed the message too! It was about outreach, which is weighing on my heart. Being here in the NICU I feel that I have a lot of opportunity to reach out to others, but I just don't know how to approach them."

June 17, 2008

"Today has been an incredibly hard day...I am so ticked right now - I am pretty sure that I have the worlds worst nurse. She is very unpersonable and has been short with us all morning. It doesn't help because today has started out totally cruddy. I got a call from Dr. W. at 7:30 this morning. Parker had had a rough night. They put him on oxygen and took an xray of his chest and belly. This showed something in his bowel, which could be a possible infection. They have suspended his feeds until they find out what's going on. They even drew blood and put him back on an IV...

(Later that day)
"At this point they don't think it's an infection, but they are waiting on cultures, which will take a couple of days. He will be staying on his nasal cannula. I was reading Marla's book just now and came across this quote:'Our little ones are resilient and forgiving. Our God is a God of grace. These experiences keep us humble and remind us of our need for a Savior. And those angels are always on duty.' Oh how I needed that today."

(Even later that day...)
"This whole thing is frustrating me. I mean besides my growing PPD; I am watching my child struggle. It feels like he takes 4 steps forward and 15 steps back. i feel like we are gonna be in this NICU FOREVER. I don't know how much more of this I can take. I feel my hope just slowly fading away. I see no light at the end of the tunnel. I am doing my best to fully rely on God and trust that He is handling this situation. I really just want to scream out to God. Or maybe even scream at Him. Is it even ok that I am angry? Because I am so angry. I truly do not understand why I am finding myself in this situation. I feel like I am being punished or something. But, yet, I know deep down I am not. The hardest thing is to meet other children and see them thriving when Parker is having all these issues. I keep playing the comparison game. I look over at L and think 'well he's been off Cpap for a couple weeks and is doing well. Parker not so much.' But Parker is not L, nor is he B or anyone else, he's Parker. This is how Parker is, this is his life and his set of challenges - this is what will make him stronger and make him who he is as Parker. It doesn't make it any easier to watch him struggle though..."



It kind almost cracks me up to read these now. Mostly because of my horrible grammar and punctuation. I can look back now at this set of entries and clearly see what God was doing. He grew my so much during that time. I have since learned to lean on Him and trust Him and His will. That hard day I was having on June 17th just shows this to me. At the time, I didn't think I could make it through. I was angry with the rude nurse, scared for Parker, depressed, angry with God, wanting to scream....and now I look at it and clearly see God's leading and His lessons. I won't lie, there are a lot of times now that I struggle to trust, but I have grown to know that that's all I can do at times. And I see what this trusting can do. I trusted God with Parker's allergy tests and they came back mostly great!

God is good and he has a plan for Parker...who knew? - Oh He did!

Guest Post - Cheryl from Lips Unzipped

I asked a new friend a couple weeks ago to share her preemie story. Unfortunately, last week I wasn't able to post her story because of a trip to Indiana and no internet, but this week, I am thrilled to introduce you to Cheryl from Lips Unzipped!

---------------------

Hi everyone!!! Denise recently asked if anyone would be willing to write a guest post on preemies, since it is prematurity awareness month! I’ll introduce myself a little bit and then get into the nitty gritty details! I’m Cheryl, a 28 year old mom to 2 beautiful little girls. Lauren who is almost 3 and Jillian who turned 1 in September. Married to my “soul mate” (sound sickening?? Well, I didn’t believe in soul mates either until I met Adam) we’ve been together for almost 10 years, married for almost 5.

My first daughter, Lauren was born at 38 weeks, 1 day. Via c-section. I had been having pretty regular contractions and she was sitting VERY low in my pelvis. I actually started with preterm labour on Christmas Eve of 2006. Lauren is my “atypically” developing child. No serious complications after birth, nothing that would ever clue me into problems we might have with subsequent children. My wish was always to have a large family, since I’m an only child. However, it didn’t work out that way!

Jillian is the icing to our cake, I guess. My worrying about her started at 12 weeks gestation. When I had the triple screen done to check for chromosomal defects. I went to the doctor and he told me that my levels for Downs Syndrome and Spina Bifida were raised. Adam and I opted to have an amnio, not that we would have done anything with the results, we just needed to know. Come to find out, Jillian’s chromosomes were all there, happy, healthy and accounted for. My doctor warned that it might be a placental problem, so, we’d have to keep an eye on it.

Now while I was pregnant, I met a wonderful friend Anna. Who actually had a 26 weeker. I visited them on a regular basis and hoped that I would be BEGGING Jillian to vacate my body. Almost a month after Noel was born, I was walking back from visiting him and noticed that my pants and underwear were wet. It was summer. I started making excuses about why it might be happening. “Maybe I peed myself?” (Jillian was also a frank breech presentation) “Maybe Jillian kicked something?” Lauren needed a nap, so, I laid down to get some rest when she fell asleep. When I stood up, I felt a small gush. I panicked. I was 29 weeks, 3 days. I immediately called Adam and asked him to come home.

Fast forward 4 days. My doctor and I had already discussed that I was going to have a repeat c-section. I REALLY wanted a VBAC, but, my uterine scar was thinning. I was put on complete hospital bedrest for 4 days. I was only allowed up to use the bathroom, oh and a 5 minute shower every 2 days, where a nurse would stand outside and knock when my time was up. I felt like a prisoner, but I was willing to do anything to keep Jillian inside! Luckily, Adam was able to stay home with Lauren and they made twice daily treks to the hospital.

September 8th, 2008 marked the day that Jillian entered our family. She was born at 30 weeks gestation. Jillian gave us a scare the night before she was born when her heart rate was up to 190 bpm. She settled down and I attempted to sleep. My doctor arrived in the morning (after being on call all night) and did an ultrasound. I was contracting every 10 minutes, but it wasn’t painful at all. I thought it was Braxton hicks and that it would go away. He checked my cervical length and dilation through the ultrasound since my water had broken, they didn’t want to introduce any bacteria. At 8am, I was completely closed, not effaced, feeling I had nothing to worry about.

By 10 o’clock, I was having to breathe through contractions and concentrate. I paged my nurse (who immediately came running because she knew I didn’t page them unless absolutely necessary) my nurse paged the resident on call. They were all trying to decide if they should take me to labour and delivery to monitor my contractions, or just take Jillian out. The resident decided to check to see if I were dilating. I had made it to 3 cms (in less than 2 hours). Since my blood pressure was so low, they couldn’t put me on ANY drugs to stop the contractions. So, it was go time. I asked them how long I had before we went to the OR. I was told 10 minutes, TOPS. I IMMEDIATELY called Adam and told him to get to the hospital. Thankfully a nurse and a social worker were able to watch Lauren. By the time my spinal was placed they checked me again and I was 6 cms dilated, guess it is true that you go faster with your second baby!

Since Jillian was breech, when the doctors lifted her out, they flashed me her bum before heading to the NICU. I was so upset to be separated from her, but, I knew she was in VERY competent hands. Considering her gestational age, it really surprised EVERYONE that she cried when she was born.
After spending 5 weeks in the NICU, Jillian FINALLY got to come home on Thanksgiving Monday (October 13, 2008- we’re Canadian, eh?!) I thought that our battle with prematurity was over . Sure, we had TONS of doctors visits and other things to keep her healthy, but I didn’t think we’d see any long term effects.

In November of 2008, Jillian was hospitalized briefly for a blue spell. She stopped breathing for 5 seconds, twice. HOW SCARY! They decided to do a head ultrasound while we were there (VERY common in preemies) they did see that she had a PVL and told me it could lead to Cerebral Palsy. Obviously devastated, I wanted to be able to fight for Jillian. We ended up having another head ultrasound in February of 2009. Fortunately, they saw that her PVL was gone. Adam and I were ecstatic. Unfortunately, her soft spot was fusing, so they didn’t get an accurate picture.

Jillian is developmentally delayed, with VERY high muscle tone in her legs and trunk. Depending on early intervention, we started therapies. In September of 2009, Jillian’s fabulous doctor decided that she needed a sedated MRI to see if there were any underlying causes of her delays and muscle tone. It was then we learned that the PVL wasn’t gone, in fact, it had gotten bigger. Obviously upset again, I decided we needed to fight harder for Jillian.

As of October 22nd, 2009, Jillian has been diagnosed with Cerebral Palsy. We don’t know the type or severity yet as we have to see what Jillian will do on her own. Our hopes are high that Jillian will over come this, but we also have to be realistic about the whole thing. Jillian’s CP is a result of her early birth. Never in my wildest dreams would I have thought I would have a “special needs” baby. Not that I’m close minded or anything like that. But, I think we as parents NEVER want to hear that there is something wrong with your child.

We are now awaiting so many specialists I don’t know when I’ll ever be able to sleep. Jillian is our icing on the cake, and we wouldn’t have it any other way.

NICU Terms H-K

***sorry for my lack of posts the past few days - Parker's been sick and we've been busy!***

Heel Stick
Pricking the baby's heel to obtain small amounts of blood for testing.

Hemaglobin
A material in red blood cells that carries oxygen and contains iron.

High Frequency Oscillatory Ventilator
A special ventilator capable of breathing for a baby at rates exceeding those of a normal ventilator (for example, 120 - 1,320 BPM, or Breaths Per Minute).

Hydrocephalus
Abnormal accumulation of cerebrospinal fluid within the ventricles of the brain. It is sometimes known as "water on the brain." Within the center of our brains each of us has two fluid-filled areas called cerebral ventricles. Cerebrospinal fluid is made within these ventricles and distributed over the surface of the brain and spinal cord. When the normal circulation of cerebrospinal fluid is interrupted, fluid can accumulate within the ventricles. This fluid puts pressure on the brain, forcing it against the skull and enlarging the ventricles. In infants, this fluid accumulation often results in bulging of the fontanelle (soft spot) and abnormally rapid head growth. The head enlarges because the bony plates making up the skull have not yet fused together. In preemies the most common cause of hydrocephalus is intraventricular hemorrhage.

I & O (Input & Output)
Refers to the amount of fluids given by oral feedings and/or by IV, and the amount of fluid excreted in the urine or stools.

Isolette
Also known as an incubator, an isolette is a clear plastic, enclosed bassinet used to keep prematurely born infants warm. Preemies often loose heat very quickly unless they are put in a protected thermal environment. The temperature of the isolette can be adjusted to keep the infant warm regardless of the infant's size or room temperature.

Kangaroo Care
Skin-to-skin contact between parent and baby. During kangaroo care, the baby is placed on the parent's chest, dressed only in a diaper and sometimes a hat. The baby's head is turned to the side so the baby can hear the parent's heartbeat and feel the parent's warmth. Kangaroo care is effective, but it's limited to babies whose condition is not critical.

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.

65 Minutes in the Hallway

Today is the first of my guest posts and I have asked my husband to share his side of the preemie experience. I hope that you enjoy his part of the story...

When Denise asked me to write about my experience as a NICU dad and father of a preemie, I knew I needed to accept the offer. Parker is probably the single greatest accomplishment in my life so far. For years I have realized that being a dad is among the greatest honors that I can imagine. His birth, though, was one of the most disorienting experiences possible.

9 days prior to Parker's birth, Denise & I had been to the hospital in the middle of the night because she was experiencing difficulty breathing. During that long ordeal, the diagnosis was the severe heartburn that plagues many women during pregnancy. Her OB, though, did follow up and was paying attention to all of the right things in those 9 days until Parker's birth.

Having set that context, when Denise wasn't able to sleep comfortably on May 28, neither of us suspected what was going to be happening in the next few hours. At 3am, having exhausted all of our ideas for making her comfortable, we called the doctor who referred us back to the hospital. When we arrived at 4am, both of us assumed it would be another short stay in the triage section of labor & delivery for a similar ailment.

As things progressed and we learned the seriousness of Denise's condition, that's when I went into "hospital mode". When I was growing up, my brother, Steve have multiple medical complications that led to routine hospitalizations. Being 4 years older than me, I never knew life that wasn't in and out of the hospital. Personally, I've never been admitted to a hospital, but I've spent significant time around them and doctors' offices. That's led to me having pretty strong coping mechanisms and such for that environment that I collectively call "hospital mode".

On the morning of May 29, 2008, all I knew was that I had to go into "hospital mode" in order to be strong and be there for my wife and soon-to-be-born child. I disconnected myself emotionally from what was happening and was simply "there" for Denise. During the hour or so we had between the decision for the emergency c-section and her being wheeled back into the surgical suite, I simply stood by her bed and sought to comfort her.

When they took her back to surgery, I was unable to go with her. The process of getting me prepped to be in the operating room was going to take too long, particularly in light of the fact that she would be under general anesthesia and that this was an emergency procedure. I was able to walk alongside as they wheeled her back to the operating suite, but had to stop at the big red line on the floor that divides the sterile from open environments. At the big red line, I was introduced to my companion for the next 65 minutes, the bench.

Just outside the recovery section of the labor & delivery surgical suite, there is a bench in the hallway. That was where I spent the approximately 65 minutes between when Denise was wheeled into surgery and when she was taken to the ICU. In those 65 minutes, I sat numbly texting furiously to keep myself occupied. The staff at the hospital was so gracious to me. They checked on me, they offered me snacks, and they updated me on my family. I cannot thank them enough.

Those 65 minutes are the longest of my life. When it comes to my family, I am a doer. I do things. I don't sit by. I have this compulsion to fix things and to be active. For those 65 minutes, sitting alone in the hallway on a bench, I could do nothing.

Finding out that I had a son, meeting him as he was transported to the NICU, walking with Denise as she was transported to the ICU - these are all memories that I take with me from that hallway.

After those 65 minutes in the hallway, I wasn't just a husband, I was a dad too. In the 525 days since then, I have grown, I have spent 69 days watching my son fight and grow in the NICU. I have seen him become a toddler. I have walked in the March for Babies. I have done many things since that time, but it to me is the center of my experience as the dad of a preemie.

Writing about this has been a good step for me. Honestly, I am still working through the emotional side of things from those 65 minutes in the hallway. Much of me is still in "hospital mode" when it comes to that experience. Being the parent of a preemie doesn't stop at a given time, it is an experience that shapes the rest of your life.

If my story has helped you understand prematurity a bit more or even piqued your interest in the topic, please visit www.marchofdimes.com to learn about the reality and see how you can become involved in the work surrounding prematurity.

NICU Terms A-C

One thing I wish I would have studied while Parker was in the NICU were some of the terms I heard on a daily basis. I got used to them after a while and even now - there are times where I have to explain some of these terms. On Tuesday's and Friday's I will share with you some of the terminology of the NICU. I want to do this so the next time you come across someone saying something about being in the NICU and using big words or phrases you may not understand, you will have a resource that will give you the info you need...

(this is taken from ttmf.org)

Adjusted Age
Also known as "corrected age." This is your child's chronological age minus the number of weeks he or she was born early. For example, if your 9-month-old was born 2 months early, you can expect him or her to look and act like a 7-month old. Usually you can stop age-adjusting by the age of 2 or 3.

Anemia
A condition in which the red blood cells in the blood — measured by a hematocrit, or "crit" — are lower than normal. Red blood cells carry oxygen and carbon dioxide to and from tissue

Apnea
Cessation of breathing lasting 20 seconds or longer. Also known as an apneic episodes or apneic spells. It is common for premature infants to stop breathing for a few seconds. They almost always restart on their own, but occasionally they need stimulation or drug therapy to maintain regular breathing. The heart rate often slows with apnea; this is called bradycardia. The combination of apnea and bradycardia is often called an A&B spell.
Apnea gradually becomes less frequent as premature infants mature and grow. There is no relationship between apnea and sudden infant death syndrome (SIDS).

Aspiration
1. The accidental sucking in of food particles or fluids into the lungs.
2. Removal of a sample of fluid and cells through a needle.

Blood Gas
A blood test used to evaluate an infant's level of oxygen, carbon dioxide and acid. This test is significant because it helps to evaluate an infant's respiratory status.

Bradycardia (“Brady”)
An abnormally low heart rate. Bradys are usually associated with apnea in premature infants. During these spells the infant will stop breathing for at least 15 seconds and the heart rate will start to slow, also referred to as an "A&B spell." Gentle touching or other stimulation almost always restarts the breathing and increases the heart rate. Medications (theophylline or caffeine) are often used to treat these spells in newborn babies.

Charge Nurse
The registered nurse who has general responsibility for coordinating the nursing care of all babies in a unit for a particular shift. Nursing shifts may be either 8 or 12 hours.

Continuous Positive Airway Pressure (CPAP)
Supplemental oxygen or room air delivered under pressure though either an endotracheal tube (tube that goes directly into the infant's lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator.

These are ones that I used regularly when blogging or where often uttered in the NICU when I was there. My son was on a CPAP for part of his time...and initially had a lot of Brady's and issues with aspiration. I am still not 100% used to having to use the term adjusted age - which for Parker is just about 14.5 months.

Tomorrow begins my journal journey wednesdays...I look forward to sharing with you what went through my mind as I was with Parker in the NICU each day.

Please know that if you have a question or would like certain information to be posted, I'd be happy to do so!

Not What I Expected

As a women I cannot begin to tell you how thrilled I was when I found I was pregnant in Dec of 2007. Growing up, it was my dream to have children, to love a child, to be a mommy and there it was in front of me - my 2 tests telling me "Yup Deni, you are pregnant!" It was a surreal moment to know that in my belly was a little itty bitty bean that in a mere 10 months would be in my arms screaming - covered in ooky goo but more beautiful than anything.

But, that didn't happen. Nope...not in the least. I won't get into my story at this point, that's for the 17th of November, but I will say this...when I had Parker, it wasn't want I expected.

When you have a baby, you expect to be in labor for hours, screaming for epidurals, yelling at your husband, screaming, pushing, ect (or maybe that's what I expected!) You don't expect to have an emergency c-section and not get to see your baby for 3 days (other than in pictures).

You expect to have that crying child covered in goo weighing in the 5-8 pound mark put on your belly and you cry tears of joy...not this...


You don't expect to have to see tubes in your child, breathing apparatuses on his face, noises going off everywhere and you certainly don't expect for that child to weigh a mere 2lbs 3ozs...



You also don't expect to have to be wheeled to another place in the hospital to see that little bundle of joy lying in an incubator while there are other children just like that around.



And you don't expect your first time holding him will be the day you are discharged from the hospital. You also don't expect to not bring him home with you that day - it's not supposed to be like that.

However, that was my reality and that is the reality (though each person is different) of many today. More than 13 million babies are born too soon worldwide. In fact in an average week in the US 10,440 babies are born preterm of those 1,664 babies are born VERY early. Those numbers are just not what you want to see.

I never thought I would be one of those 10,440 and I certainly didn't expect to be one of the 1,664. I did everything right in my pregnancy, I expected to have Parker in august and go through labor and bring my baby home just a couple days after having him.

But God had a different plan and looking back now I am thankful for that. Having a preemie has made me more aware of what March of Dimes is doing for women and baby everywhere. I have gained more faith and have really been able to work with March of Dimes and other preemie parents to make aware the realities of preterm birth.

I certainly didn't plan to have a preemie, nor do I plan to have another. But I am glad that I can use what I have been through to reach out to others.


-------

This month I am hoping to blog regularly about prematurity and my journey within the community of preemie parents. This blog will give you statistics, information, and I will also share bits and pieces of our journey. I hope to have some guest posts (if you are interested, please let me know), Wednesdays I will share with you some excerpts from the journal I kept during Parker's 69 days in the hospital and much much more.

You don't have to be a preemie parent to blog about prematurity. On Nov. 17th, prematurity awareness day, BloggersUnite wants you to blog the story of a preemie you know or have to promote awareness. You can always add a badge to your blog as well. (See my post from Sat. Oct. 31 for links!)

Be Blessed!