One Step Forward, One Step Back

We are having to make some big changes in Ethan's diet. His last levels came back at 8.6 which is pretty high. So obviously we have to get those levels down. The Dr had him at 43g of protein a day (the one step forwad) but with these levels he has him back down to 35g of protein (the one step back) and we are to get Ethan tested again before Christmas. If you pay attention to labels 35g of protein is not very much and it really limits what we can give Ethan and how much of things we can give him. For instance 1oz of turkey has 8g of protein (an ounce is not very much) so turkey is something he can't have. Another example is 1oz of cooked ham had about 4g of protein so we have to watch his intake of ham. Meats tend to be the big culprits of high protein so we need to measure how much meat he eats at a time and we need to know how much protein is in 1oz of meat to measure out how much he can have. Now potatoes have less protein, 1 cup has 3g and since he won't eat a full cup potatoes is something that he can have. How they are prepared makes a difference too. When cheese is added that brings up the protein count and so on. Confusing? Now you know how we feel LOL. So what have we done to make changes to his diet? For starters he is not drinking cows milk very often as it has 1g of protein per 1 ounce of milk. Instead he is drinking Almond milk and Coconut milk which has 1g of protein per 8 ounces of milk. It also has all the vitamins and calcium that you find in cows milk (a little more actually) so he is getting all the right nutrients there. We also give him more vegetables (carrots, green beans, squash) at dinner time in place of a full serving of meat or pasta. Vegetables do not have much protein in them if they have any protein it's less than a gram per serving. Fruit has no protein so he can have as much fruit or juice as he wants. When it comes to desserts many don't have much protein either but any desserts (pies, cookies, ect) that are baked with aspartame, splenda, or any other fake sugar he can not have. The fake sugars make the phenylalanine in his blood rise and then we get a false reading on his tests. So that also means no diet pop as well. With all this info it means that we have to write down everything he eats or drinks and how much of it he had.

So why am I explaining all this when most people are scratching their heads going "Duh what?" (lol)? Because with all the holidays coming up and all the gatherings people might feel tempted to give Ethan a bite of whatever they have on their plate or a little sip of their drink. I am more concerned with Thanksgiving than Christmas right now as we will be testing Ethan not long after Thanksgiving. So I am asking people not to just give Ethan a bite of something because he asked we need to be asked first and we need to know how much so we can write it down (it's preferable if we measure everything out since we know how much protein per ounce is in foods). It's really important that everyone knows this. We were told that if his levels were to stay that high for a prolonged amount of time it could lead to brain damage. The Dr wants to keep his levels under 6 which is considered the safe zone.

We are at fault for Ethan's levels being so high because we no longer had to keep a journal of what he ate & how much. We did not think that he was actually coming anywhere near 40g of protein based off of what he was eating but we were underestimating how much protein was in certain meats. So now we are being very diligent to make sure he is not going over his protein limit.

OK with that said let's move onto something a little less serious. Today Ethan went on a scavenger hunt in the closet with me. I opened the closet door in the living room to put something away and I was greeted with a very nasty smell. So after breakfast I decided to look for the source of the smell (for all I knew it could have been something in a jacket pocket). I pulled out the vacuum, the diaper bag, a tv tray, and a bookbag. Then I went to start pulling shoes out of the rack when I found the source of the smell. Do you want to know what it was? I'll keep you in suspense for a moment just because I can LOL. It was a dead mouse. Yep you read that right, a dead mouse. It was just sitting there in the shoe rack (it's wire), nothing was touching it so it wasn't stuck or crushed. This must have been the mouse that Peek-a-boo was chasing the other night (we saw it go under the entertainment center). So I donned rubber gloves and picked up the mouse. I had Ethan corralled in the dining room so he was out of the way. He helped me pull things out of the closet but once I found the mouse I immediately held him back. I did however hold it up for him to see (I don't think he's ever seen a mouse before). And of course I took a couple pictures with my phone because what fun is a scavenger hunt for something stinky unless you get a picture of the stinky object to gross out other people. You can see the pictures on my facebook page if you're interested (although I doubt anyone wants to see a dead mouse LOL). I think Ethan was a bit disappointed our scavenger hunt didn't last longer (I'm glad I found it quickly instead of having to drag everything out of the closet). Maybe I will set up a little scavenger hunt this week for him to do in the house he might find that fun.

For everyone who bought a March of Dimes band Thank You we raised $23 to give to the march of Dimes. I do have one extra one if anyone is interested in buying it for $5 and that will be donated to the March of Dimes as well. Let me know.

Fight For Preemies

The Preemie’s Prayer
Dear God, as you look down upon us,
We know that you might have to squint.
We’re located here in the NICU:
It’s the nursery that we rent.
There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.
We have a lot in common;
All of us were in a hurry.
For many different reasons,
Our storks came a little early.
Some of us don’t know why,
We bursted out from our bubbles.
We entered into this world,
Never meaning to cause any troubles.
Vickie Spencer 2008


On June 3, 2008 at 10:02 PM Ethan Russell Pacholski entered into this world weighing 3lbs 9oz. Today he is a happy, healthy 2 year old boy. Here is Ethan's story.

Ethan became a twinkle in our eyes in December 2007 just a week before Christmas. I was 7.5 wks pregnant. We were told that our beautiful baby was due on August 11, 2008. For the first 26 weeks everything was going great. We had a 20 wk ultra sound that showed us that we were having a boy. He was perfect he was growing like he should & everything was on track with his development. Then just before Mother's Day I came home from work craving Chinese food. So Matt went to our favorite Chinese restaurant for take out. When he got home something felt wrong, I felt wet. So I went upstairs to the bathroom thinking that the baby as laying on my bladder but when I got there I found myself in a puddle of blood. After a call to the Dr. we headed straight to the maternity ward at the hospital. By the time we got to the hospital (with in an hour of noticing the blood) it was already slowing down. I was hooked up to a monitor & there was his heartbeat going strong at about 150. The next day I had an ultrasound done & everything was looking great. I was sent home the day before Mother's Day feeling that it was the best Mother's Day present I could have because I was still pregnant. After a week of bedrest I was given the OK to go back to work. The next 4 weeks went by without a problem then on June 2 at about 10 in the morning I started to have back pain. I figured it was just from the long road trip we had taken to New York (I was given permission from my Dr). As the day progressed the back pain got worse. By the end of my day it was so bad I cried the whole way home. I tried taking a warm bath to help ease the pain but that didn't work. I took some Tylenol for pain relief but that wasn't any help. I didn't get any sleep and at about 4 in the morning the pain left my back & I began having contractions. I started timing them right away to see if they were regular & they were. We called the Dr & headed back to the hospital. This time I was told that I was done working & that I was going to be on bed rest until I delivered the baby. Later in the morning I began leaking fluid this is when I was told that I was going to be in the hospital for the next 4 weeks & they were going to keep me pregnant until I reached 34 weeks then they were going to have to deliver the baby. But at 6 that night my water fully broke & Ethan was on his way. A nurse from the NICU came in to talk to me. She told me that at 30 wks my baby was going to need to be on a vent for at least the first 48hrs of his life. She said that he was going to be about 3lbs & was at high risk of infection.  Around 7PM I was about 3cm dialated and I asked for an epidural. They drew some blood & called for an Anesthesiologist. The pain meds weren't coming soon enough by 8 that night I was up to 7cm dialated and by 9:00 I was at 9cm. They rushed me to a delivery room & I started pushing a little after 9:30 and at 10:02 Ethan was here. He screamed at the top of his lungs & he didn't stop. About an hour after he was born they brought him to me so I could see my little boy. He was stable enough for me to hold him for a minute. He had 10 very tiny fingers, 10 very tiny toes, a head of thick black hair, & a little button nose. When the nurse handed him to me he opened his eyes & managed to wiggle a little hand out & he grabbed my finger. It was then that I named him Ethan Russell. He was so tiny & so fragile, the smallest baby I had ever held and I have to say I'm special because not many people can say they held a 3lb 9oz baby. Ethan defied all the rules. He was on CPAP for the first 6 hrs and after that he was breathing fine. The nurses were always telling us what a wiggle worm he was. He did not like to have his diaper changed & he was Houdini when it came to pulling out his NG tube. We were told to figure that Ethan would be in the NICU until at least his due date so it was going to be a long haul. When he was 4 wks old he was moved to an bassinet because he showed that he was able to hold his own body temperature. We also began trying to bottle feed him one bottle at a time. We started with a bottle a day for the first couple days. When he did well with that we moved up to 2 bottles a day and so on. On July 22 we were asked to bring in his carrier so they could do the car seat test the next day. They were getting him ready to go home. All he had to do was be able to take 8 bottles a day for the next 48 hrs with out dropping his stats and he would be out the door. On July 25 the NICU signed his release papers and at 3PM that day Ethan, Matt & I walked in the backdoor of our house for the first time as a family. After 52 days in the NICU Ethan was finally home with us where he belonged.

Today, at age 2, he has no complications from his premature birth. He is 27lbs, 33" tall & healthy. Ethan's favorite things to do is run, jump, climb, and watch Curious George. He loves to hear people sing, he is always asking me to sing to him & in the car I always sing to him with his playlist on my IPod. He has a lovey, a stuffed lamb that he named Moose after 18 months of us calling it Lambie, he has a strange obsession with garbage, & he is currently potty training. We were so lucky that he was born so healthy. Someday we will make Ethan a big brother and he will be a great big brother when the time comes.

Prematurity is not something to be taken lightly. There are so many possible complications that come with it. The earlier a baby is born the more complications they will most likely have.  Once a baby reaches 25 weeks gestation it is considered viable. This means that the baby will be able to survive outside of the mother. Babies that are born between 23 weeks and 25 weeks are considered on the edge of viability. 

Common complications from prematurity -
- Respiratory Distress happens when a babies lungs are not mature enough to breath on their own. Babies with RDS will need to be placed on a vent until they are able to breath on their own.
-Apnea is when the brain forgets to tell the lungs to breath. This happens because the brain is not fully developed. As babies get older it will gradually happen less & less.
-PDA (Patent ductus arteriosus) is when the lungs have too much blood flowing through them. It can cause chronic lung damage, puts a strain on the heart, & makes respiratory distress worse. It can correct itself, be corrected with medication, or through surgery if the medication doesn't work.
-IVH/PVL (intraventricular hemorrhage/periventricular leukomalacia), are brain bleeds. IVH has different levels known as grades (1 being mild 4 being the worst). Small grade bleeds don't normally leave any lasting damage but the larger bleeds can lead to complications like cerebral palsy, mental retardation, vision/hearing impairments, or death. PVL is what shows if the brain suffered any damage from the bleed from lack of blood flow to the brain.
-ROP is a condition where abnormal blood vessels develop in the eyes. Normally it can correct itself without and lasting damage. It can cause vision problems, the retina could detach & in a few cases leave the baby blind.
-NEC is inflammation of the intestinal tract. In mild cases it just leads to  feeding intolerance, in moderate cases it can lead to infections, & in severe cases requires surgery to remove damaged intestine.
-BPD (bronchopulmonary dysplasia) is chronic lung damage babies who are still in need of help with breathing after 36 weeks gestation indicate this

Disabilities-
-Mild to moderate- respiratory problems that might require being on oxygen for months after coming home, mild cerebral palsy (difficulty controlling movement), vision/hearing problems, learning disabilities
-Severe- chronic respiratory problems (needing ventilator support), severe cerebral palsy (needing a wheelchair) blind/deaf, mentally retarded

23-25 weeks - A baby that is born at 23 weeks only has a 20% chance of surviving. The average weight for a baby that early is around 1.1lbs (498g) and the average length is 11.4" (29cm).  A baby born at 25 weeks has a 65% chance of surviving. The average weight for a baby at this gestation is 1.45lbs (658g) and the average length is 13.5" (34cm). When talking about what their health will be in the long run roughly 33% will live normally, 33% will suffer from mild to moderate types of disabilities, and 33% will have severe disabilities. The lungs of babies born between 23-25 weeks are severely immature and they will more than likely be born with respiratory distress. These babies will most likely need to be on a ventilator to help them breath. How long the baby needs to be on the vent will depend on how immature their lungs are at birth and how quickly their lungs mature after birth. In some cases babies will continue to need oxygen even after they come off the vent and may even go home on oxygen. For babies this early 65% will have BPD that resolves by the age of 2. In babies born this early 40%-50% will have PDA, 10% of those babies will need the surgery to correct it. Babies this early have a 15%-20% chance of developing IVH (15%-20% will have a severe brain bleed). Most babies this early will develop ROP, less than 15% require surgery to prevent the retina from detaching & 5% may go blind from it. NEC will develop in 5%-10% of babies born this early. Of the babies that develop NEC 50% will require surgery and 60%-90% will survive it. When it comes to infection almost 50% of babies born between 23-25 weeks will develop one. At this gestations it can become a severe infection but they have about a 75% chance of surviving it.

26-29 weeks - Babies born at 26 weeks have a 75% chance of survival while babies born at 29 weeks have a 85% chance of survival. Babies born at this gestation have a reduced risk of developing complications. At this gestation babies have a better chance of living a normal healthy life, 40% will be normal, 40% will have mild to moderate disabilities, and 20% will have severe disabilities. At this stage the lungs are still too immature so they will have RDS & will need to be on a vent but they tend to come off the vent in a few weeks & may need oxygen after they come off the vent, only 50% will develop BPD. Of the babies born at this gestation 40%-50% will have PDA (only 10% will require surgery), small brain bleeds are common (only 5%-10% will have a large grade bleed), 5%-10% will develop NEC, 75% will have ROP (7% need surgery, 4% will go blind), and babies at this gestation have a 30% chance of developing an infection.

30-33 weeks- Babies who are born at this point do very well. They have a 90%-95% chance of survival. Of the babies born at this stage 65% will live normal lives, 20% will have mild to moderate disabilities, 15% will have severe disabilities. At this gestation most babies lungs are mature and they are able to breath on their own, only 25% will have RDS but will come off the vent within a week and 10%-15% will have BPD, in 40%-50% PDA will occur 10% will need surgery, 15% of these babies will develop an infection, and very few will develop NEC.

34+ weeks- Babies who are born at this gestation have a 95% survival rate and have little chance of any disabilities. By this point their body is almost as mature as a full term baby (37+ weeks) so any problems that may come up will most likely resolve within a week or so. Only a small percentage of babies born at this gestation have severe problems. Even though babies at this point are practically full term it's still important for them to stay inside mom as long as possible.

When women find out that they are going to become a mommy they picture watching their belly grow with each passing month, feeling their baby kick, preparing the nursery for the arrival of the newest member of the family. They never think that they will spend weeks in the hospital from pregnancy complications, that they will hear that their baby may not survive, and they certainly never think that they will have a premature baby. It's so important for people to be aware of what challenges preemies face. Even though many preemies go home there are so many others that never leave the NICU.  At this time I would like to take a moment to honor some of those babies who lost their struggle.

Kayleigh Anne Freeman (June 23 2008 - May 11,2009)
Joshua Alexander Castillo Escobar (Oct 7, 2009 - April 22, 2010)
Gabriel Cole-Kosakowski (Oct 2, 2009 born @ 17 weeks)
Gabrielle Murphy (Aug 5, 2001 stillborn)
Charlie (January 2010 - Oct  2010)

Silent Child
by Kelly Lancor

My silent child
our precious baby,
Close to my heart
I'll keep you with me.
An important job
God has for you,
There is love to give,
and work to do.

He needs an angel
strong but small,
To shine light on many
and give love to all.
Before you go
I give you this,
half my heart
and one last kiss.

We'll miss you dearly
that we know,
But by God you were
chosen,
So to heaven, you must go

Let's Talk about Ethan

Have you ever seen those commercials with the Energizer Bunny? You know the ones that say "The Energizer Bunny, he keeps going and going and going." Well I think I was wrong when I gave Ethan his name. I think I should have named him Energizer LOL. He has had a bit of a cold this week but that sure hasn't stopped him one bit. He is full of energy & spunk. Oh how I wish I could have just an ounce or two of his energy. Boy would that help in being able to chase after him cleaning up his messes.

Ethan had an appointment on Tues. with the endocronologist for his hyperphe. He weighed in at 28lbs and35.63". This puts him about 31% for weight and 43% for height. We had his labs drawn on Saturday but the results have not come back yet. He is still at 43g of protein a day but if his results come back lower they may want to up his protein intake then do another blood draw to see how he handles it. So everything is going very well for him.

What else has Ethan been up to? Let me think. Well he is now saying his name which I have video of and will most definitely post at the end of this post. A few nights ago I asked him what he name was and he wouldn't tell me so I asked him:

What's my name?

You're MomMom

What's his name? 

That's Dada.

What's your name?

Name

It's hard not to laugh at that. So then later on we tried it again. So Matt asked him:

What's her name?

That's MomMom

What's the cat's name?

That's Carmel

What's my name?

You're Dada

What's your name?

I'm Me!

Does it get any cuter than that!? So then yesterday I was getting him around to go have lunch with his daddy and I told him if he told me his name I would give him Moose back so he told me "E-tan". Then when I got him in his car seat he dropped one of his plastic eggs that he loves to have in the car so I turned on the video on my phone and told him to tell me his name and I would give him the egg. It took some coaxing but I managed to capture him saying his name. Now he will pretty much tell me what his name is. It is so stinking adorable to hear him say his name. After lunch with dada we went and visited Grandpa Frank. Ethan was such a little stinker. He told me he had to go potty so I took him to the potty he barely went then tells me "All done!" I asked him to make sure he was done before he got off the potty. He just kept saying "Done!" then right as I went to help him off he tells me "Shake it" b/c that is what we taught him. To shake all the drips off before putting his pants. Then barely 10 mins later he was soaked so my dad said he'd throw his pants in the dryer and I put Ethan in a diaper I had in my purse. After a half hour my dad went to check and see if Ethan's pants were dry and Ethan followed him to the laundry room and asks "Are they done?" That's a first he has ever said that but it's so cute. He is really starting to talk a lot more now and sentences are starting to become a little more clearer. It's so impressive! He is growing up so quick.

Like I promised here is the video of him saying his name. I also have just an audio recording I took today but I don't think I can upload that here or I don't know how.

Halloween

Sorry I am so late in getting this posted.

Ethan had a great Halloween this year (not than he's never had a great Halloween). He went to his grandparents for a little early afternoon trick or treating (of course dressed in his costume). His first stop was Grandpa Jim's & Grammy Marcia's. He got to see Aunt Katie as well and as always the first thing he did was raid the fridge looking for the Redi Whip (Grammy Marcia & Daddy started a bad habit LOL). He visited there for about an hour and then it was off to Grandpa Pauls & Grammy's Nett's. He had lunch with them & got a little treat too. As always his favorite thing there was to go for the wooden ducks. He just loves to carry those ducks around. After about an hour visit there it was off to Uncle Bubba's (Brian) to see Grandpa Frank, Bubba, & Macey. He got treats there too. He had fun playing with Uncle Bubba & raiding the candy dish. After about an hour there it was home we headed to get ready for all the Trick or Treater's.

Ethan headed out for Trick or Treating just a little after 6. I was really surprised at how few houses were passing out candy on our street. I originally planned on just hitting the houses on our street but since there weren't that many we headed over to Aunt Robin's (I was hoping to see the kids on the way over but they must have gone in the opposite direction of our house first). Ethan pretty much did not want to walk so I ended up carrying him from our neighbors house (he ran right over to them b/c he sees them all the time) to Aunt Robins which is about 3 or 4 blocks. Of course we stopped at houses on the way over. When we got to Aunt Robin's Grammy Marcia & Grandpa Jim were there passing out candy so Robin & Seamus could take Kaitlin & Colin out. Ethan did not want to leave either. He kept getting into the toy box wanting to play with the balls. It was purdy darn cute. I didn't care too much b/c my arms were dead after having to carry him the whole way (he's 27 lbs now). I did eventualy coax him to go with me though. We headed back towards home & by the time I hit our street more houses were passing out candy. So all in all he hit about 15-20 houses. Needless to say I did all the leg work he gets all the candy LOL.

Of course I have pictures, this post would be boring if I didn't.

In the car

At Grandpa Jim's & Grammy's Marcia's

Raiding the fridge

Getting ready for lunch with Grammy Nett

I hate this hood

Getting into Uncle Bubba's video games

A helmet to crash into walls with

Watching football

Getting love from Uncle Bubba (Brian)

Getting my coat on

Getting my costume back on

Heading off Trick or Treating

Off we go!

 I have more pictures (not from Halloween) to post but I will post them another day