9 Months

Ethan...
You are almost a year old...has it really been 9 months since that day? June 15th was a day of mixed emotions...we were scared but so thankful to have you here with us. So much has happened since that day but we are forever grateful for everything it has taught us. We appreciate everything you do...the littlest things you do makes me cry tears of happiness. I feel like I didn't savor all these moments when your brother was your age. I am going to tell you this for the rest of my life but you are the strongest person I know. You are going to have an amazing future...I can feel it!

You love laughing at your brother and being held by him. You love his kisses and his hugs. You love bath time now!

You are eating solids now...you love the fruit and is not a big fan of veggies.

Cause you were in the hospital for alot of your life your body was not the strongest when you came home but you have exceeded every ones expectations. You have been rolling over for a while now but now you are learning to sit up. It takes so much strength to do that...

You love your "piano" toy and your jumper. Your brother loves these toys too! :)

Your stats are:
Weight: 16 lbs
Height: 26 1/2 inches long
That's a major weight gain from just 3 1/2 pounds 9 months ago. Your are in 6-9 month clothes and do not mind all the little hats I put on you.

I love you big time my little monkey! Thank you for making my life so much better!

xo

Mommy

This is what life is all about...

I was laying in bed the other night after Ethan's 2am feeding and I looked over at Ethan on my right who was in his co-sleeper sleeping away, Brayden and my husband on my left and I just smiled. ( yes you read that right, we have both boys in our room with us and we couldn't be happier right now...it will change soon though :) ) It was like at that moment all the weight of the past seven months were lifted off my shoulders right then and there. I thought to myself... this is what life is supposed to be like, this is how a mommy to a new baby boy should feel like, this is what all of those other moms have been feeling like. It was good. I am in love with my family.
 
Okay so now on to a little update on Ethan. He is doing well at home. He has gained a little over a pound in the week he has been home. He is 11lbs now...left the hospital at 9lbs 13 oz. He just wasn't gaining much weight at the hospital and I guess being home was just what he needed. :) He has had a couple of followup appointments the past week and they were very happy with him and the progress he made the past week at home. One of our favorite PICU doctors told me that he helps children start to feel better but they will never heal at the hospital, they always heal at home. I 100 % agree with that.

Milestones are going to be a tough one for the first two years. As an ex preemie he is already going to be a little behind. When a doctor follows a preemies milestones they don't go by his actual age, they go by his gestational age. So what age he would have been if he was born full term. He would technically be 5 months on Feb 2nd and for that he is meeting most of his milestones. Which is not bad seeing he was in the hospital and on his back for almost 7 months. The Physical therapy people at the hospital did not expect him to be so strong...I worked with him every chance I got at the hospital. I was and still am a determined momma! Ethan can hold his head up and if I am holding his hips he can sit up. He has rolled from tummy to back a few times(just started this at home). He smiles, laughs, coos, reaches for objects. If he hears one of our voices he moves his head towards us to listen and raises his eyebrows like he is trying to understand what we are saying :) The only time he really cries is if we are in the car and stopped at a light or stop sign and if he has to wait for his bottle to be warmed. When he is hungry...he is expecting the bottle in his mouth asap. :)

Some of his favorite things to do are:
Blowing bubbles with his mouth
Still loves his pacifier
Splashing in his little bathtub
Smile at his brother
Loves being held

Here are a few pictures of his first week home...I have more but some are on my phone and on another computer. I will post a few more later. :)

Home...again!

Our little monkey is home again. He got discharged yesterday and doing so well. He was there a few extra days because they wanted to repeat a sleep study and then we had to wait for the results. But he is home now and we are enjoying our time as a family of four! Jon took a few days off so we are making the most of it. We are so happy and we are loving every second. Thank you for all the thoughts, prayers and support!

Tomorrow is his first pediatrician appointment...i'll update this weekend on that :)

Home!

Its been a crazy past few days and I don't have much time right now but I did want to let everyone know we brought our little man home last night!!!! He had a great night at home and his big brother LOVES him...I mean kisses him every five min :) I will write more about the last few days when I get a chance and post some pics of Brayden meeting his little bro.



Here is a quick picture of Ethan at home:)



Perfect Face

No more feeding tube yay! They have to run a few tests regarding his reflux...they need to see if thickening his milk will help and try a few other things. We will know more this week as to when he will be coming home :) Other than that is is doing well and just growing.

Here are two pictures...he has a full belly and is very content here :)

Birthday Wishes!

And so my birthday wish has came true...Ethan is off the oxygen! He is breathing completely on his own. The only thing on his face now is his feeding tube...now we need to focus on feedings so we can bring our little man home. Here are a couple pictures of him and us :)

Only one person missing...brayden! You can kind of see where the incision from his surgery is

So comfy!

Sleepy Baby

Ethan's new bed

This morning my brother came over early to spend some time with Brayden so Jon and I went to see Ethan. It was an amazing morning! It turns out early this morning they took Ethan out of his isolate and moved him into a little crib. There is no need for the isolate anymore since he maintains his body temperature on his own now. :) They removed his IV...so his arms are free! They have also moved up his feedings to 42ml's and he now weighs 5lbs 10oz's.

This was the first time that I was able to pick him up from his bed to hold him without a nurse in sight. Usually they needed to be there to make sure all his lines didn't pull and etc. First time that I felt in charge or a mom to him...like this is my baby not the nurses. (if that makes sense) Now that the surgery is done with we can start working on feeding him from the bottle again!

Here are a few pictures from this morning.

the only wires he has now is feeding tube and oxygen

His new crib...and if you look close you can see the picture of his big brother that he looks at :)

Wearing Clothes!

This morning when we spoke to the NICU they told us that Ethan is maintaining his body temperature well and to bring him some clothes for him to wear. I was so happy, I practically brought his whole wardrobe to the hospital :)  In the pictures below he is wearing a little preemie onesie...in a couple more weeks and we wont be able to button it he is getting so big.

It took about 20 min to put this onesie on him because of all his wires but he was so patient with us and didn't cry once. He is such a good baby.

Our amazing little boy

The little bump you see on his head is from his last surgery.

So precious

Here he is snuggling with his "lovey"...

Brayden is a Big Boy!

A couple of weeks before I had Ethan we started to set up Brayden's new room. We decided to skip the toddler bed and go straight to bunkbeds. We figured once once Ethan was old enough the boys would share a room. Brayden was excited that he had a "big boy bed" but when it came to actually sleeping in it...well that was a different story :) So we figured we had about three months till I would have Ethan so we can take our time. Well plans changed!

We are hoping to get Ethan home at the end of this month ::crossing fingers:: so we decided that we needed to get Brayden used to his new room asap! So last Saturday we decided to start off with nap time...it took about 10 min and he ended up taking his nap in his new room! We were excited! He took all his naps last week in his new bed but we kept him in the crib at night just to help make the transition a little better for him. Friday night came and we decided to give nighttime a try. He woke up once in the middle of the night (might be because he has a cold...thank you preschool) but he was in his new bed all night. Same with last night. My little baby is growing up so fast! Next step...POTTY TRAINING.

We are not done decorating his room, we still have to get a comforter for top bunk and a couple things for the walls. Since his theme is "surfing" his uncle Chad is going to make him something for his wall. I am also going to have a little surfboard made with his name on it that will be placed on another wall. Hopefully, I can finish his room soon.

Here are a few pictures :)

Ethan's Big Day

So today was sort of a big day for little Ethan. Yesterday when we spoke to his doctor he mentioned how he was going to have the occupational therapist come in and work with Ethan and see if he was ready to bottle feed. This is something that they usually start with preemies when their gestational age is 34-35 weeks (what he would have been if he was still in my tummy). He is 35 weeks as of yesterday. So today at 2:30 she came in as I was holding him. To start off the session she took his pacifier and dipped it in milk to see if he was even ready to start bottle feeding. He took it and started to suck! :) You might be thinking to yourself...doesn't all babies do this? The answer is no. Preemie babies have to be taught to do all this especially bottle feeding. Full term babies have the "suck, swallow, breathe complex" but babies born before 34-35 weeks usually have to learn to suck and most importantly learn to breathe between sucks/swallows so they do not choke.

Since he took his pacifier so well we decided to try the bottle...I was one happy mommy. It took him about a minute to realize what he needed to do but before we knew it he was sucking, swallowing and breathing like a little pro. He took about 5cc's and then he got tired. His stats starting to go down a bit so we stopped. The therapist was pretty impressed and told us that she honestly didn't think we were going to get past the pacifier phase today. His lungs are still getting stronger which affects his breathing so he gets worn out pretty easily. So the next couple days we are going to continue introducing the pacifier to him get him used to a little more activity and meet back with her next Wednesday to see if we can get him to take more of his bottle. This is a pretty big step for Ethan and we are so proud of him.

In other news...he is currently 4lbs 10oz and has been moved off the high flow nasal cannula to the low flow cannula. His oxygen level is ranging from 21% (which is room air...what you and i breathe) to about 26%. When Jon went in last night to visit him the respiratory nurse told him that they are hoping to have him off oxygen by the end of this weekend or the start of next week so we are praying our little man can be free from all that real soon.

In regards to the surgery that I keep mentioning, we met with his neurosurgeon and he wants to wait it out a little longer to see if the fluid can resolve itself. There is still a big chance he will need the shunt surgery(90% of babies need the shunt after having a reservoir put in) but there is still a little hope. By waiting we are also buying a little more time for his lungs to get stronger and would limit the chances of him regressing with his breathing after the surgery like he did before. So much to think about...

The Strong One

We choose Ethan's name way before he made his surprise visit... and when we did choose it we had no idea what it meant. I actually heard it on a tv show before he was even conceived and I loved it (and by tv show I mean the new 90210...I know lame right? :) ) Well yesterday I decided to google it. Ethan means "strong one". We could not have picked a better name for him. He shows us everyday how he lives up to his name and we are so proud of him!

Now on to the updates!! For the past few weeks things have felt like they have been at a stand still...nothing seemed to change for the good. It seemed like the days of the ventilator were never going to end. Well I am beyond happy to announce that Ethan is off the ventilator!!! Yesterday Jon called the NICU to check on him and the nurse told him that at 11:30 am they were going to take the tube out and put him on the CPAP ( Continuous Positive Airway Pressure) and they did and he is doing great on it! the CPAP is a little mask that goes over the nose that puts out enough pressure to keep the airsacks in his lungs open to help make it a little easier on him but now he is taking all the breathes himself. They are hoping to move him back to the nasal canula (whats in the pictures below) this weekend so lets keep our fingers crossed :).

Besides his breathing milestone he has reached his goal of feedings given to him by the doctor based on weight and age which is 38cc's or around an ounce and a half. He is tolerating that well! He is getting so much stronger and looking at us so much more. In some of the past posts I mentioned another surgery that he might need. Its looking like that is going to be something he wont be able to avoid but thats okay. Its something he needs, its something that will make him have a happy and healthy life. So we are okay with it. Don't get me wrong I am scared that he has to have another surgery in his head...I am terrified. But after all is said and done I know in my heart it will be for the better. We should be having a meeting with his Neurosurgeon this week so we should know more. If its not an emergency, its likely that it will not be until his lungs get a little stronger.

This past month and a half have been a hard and crazy rollercoaster ride. It goes up and down...one step forward two steps back. We are just learning to go along for the ride. At this point we have no other option. Its hard on us, there are nights that I cry myself to sleep. I just want my baby home but he is showing us that his goal is to be home as soon as possible too! My boys give me strength...How can I not have faith when he is fighting so hard to be home!

Weight Milestone

Our little man has finally reached 4 pounds! When he was born he weighed 3 lbs 8 oz and obviously like every new little one he lost some weight at the start. ( I think lowest weight was 3lbs 3 oz) With a preemie its real hard to gain weight because his stomach isn't really ready to take on his feedings so we had to gradually work up to where he is at now. Overall, he has been tolerating his feeds well. Last night they did try to move him to a little over an ounce but it made him a little sick so we are sticking to the ounce of milk for a while. Our goal right now is to get him to at least 4 lbs 6 oz. That's the weight he needs to be in case he needs the other surgery.



As of right now I do not have any new pictures of Ethan. He is back on the ventilator and I just can't bring myself to take a picture of him on the vent. Everyone keeps saying you will want to remember all this but as of right now I just don't see how I will. So hopefully one day real soon he will be off the vent and there will be new pictures of him. He is on the lowest settings of the ventilator but he is so tired and worn out that his vitals go down at times(especially when the nurses mess with him)...so they want to leave him on for a little longer. Like everything else the doctors tell us that this is normal.


Overall, he is doing the same. They take out fluid from his head every other day. His head isn't as full as it was when he was first transferred but there is still enough to worry. We have not been able to hold him in a few days but we sit by him and talk to him, touch his belly, hold his little hand, change his diaper, take his temp and brush his hair (he has lots of it). When he is crying he calms down with his parents touch. It melts my heart. But he is very sensitive with noise and touch(by others, nurses, doctors).


It seems like time is just standing still right now. We just hope and pray that things can start looking up soon. We need that.