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...

A couple pictures of Ethan

Ethan is now off the CPAP and on a nasal canula which meant I was able to hold him last night (and today too). The first time since before his surgery at the beginning of July. Its been way to long and it felt so good to hold him again! Here are a couple pictures.

Okay so disregard the super closeup of my face but I love this picture of me holding him. You can kind of see how small he is.

And I had to take this picture...he loves sleeping with his arms up. You also get to see how many little wires and things that he is hooked up to. :( It looks scarier then it is though. Nasal canula around his face and up his nose, feeding tube in his mouth, the four sticker things on his chest are to monitor his vitals and temp and the stuff by his arm is his PIC line (an IV that can stay in longer)

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.

We must have done something right

Since the day I found out I was pregnant with Ethan we started preparing Brayden for the arrival of a new baby. It was kind of hard to think of creative ways to get someone who wasnt even two yet to understand that there was going to be another kiddo in the house. So before I put him down at night I would point to my tummy and ask him to say "night" to his brother or sister. During the day Jon would rub my tummy or kiss it and ask Brayden to do the same right after him. Once we found out Brayden was going to have a little brother..."Brother" and "Ethan" were two words that were used in our house ALOT. Before we knew it he started pointing to my tummy and would say "night brother" or "night Ethan" (obviously in his cute little way of saying it). Or if we asked where brother was he would point to my tummy.

Well the first time Brayden visited me in the hospital we showed him through the window at the NICU where his brother was and for anyone who was at the hospital visiting me when Brayden was around you would know how OBSSESSED he was with seeing his brother. It was the most adorable thing ever. He never sat in my room...he was always outside the NICU blowing kisses to his new little brother.

Now for the main reason of this post. This morning Brayden and I were in my bed as Jon was leaving for work. He was saying bye and asking Brayden what he wanted to do today with mommy today. His response was "Ethan". Jon then asked "what about Ethan? did you want to visit him?" Brayden responded with "yes" and then blew a kiss. It broke my heart because at this new NICU he can't really see him from the window and the sibling has to be 3 in order to even set foot inside the room he is in. So until the day we take Ethan home...Brayden won't be able to see or touch his little brother. But we talk about Ethan everyday with him and even though he doesnt understand exactly whats going on (he thinks he is at the doctors) he will not forget that he is a big brother to an amazing little baby named Ethan.

Below is a picture of Big Brother Brayden :)

Meet Ethan Hunter

Here are some pictures of our new little man. This was taken this past weekend which happened to be Jon's first time and my 2nd time holding him. (after a LONG 17days)
Enjoy and we think he looks so much like Brayden when he was born but obviously smaller. I'll have to do a compare post soon :)

Daddy and Ethan
Mommy and Ethan
Sleeping baby
Precious!
Wide awake...looking at his daddy

The past 23 days in a nutshell...

Ethan is going to be 1 month next week...yes 1 MONTH! I am a little behind on starting this website so let me just sum up what the last 30 days have been like. After a weekend of contractions that would NOT STOP...Ethan Hunter was born on June 15th at 28 weeks and 5 days and weighed 3lbs 8oz 16 1/4 inches long. (pretty big baby for a 28 weeker) He was taken straight to the NICU.

The first week of his life he had some problems with his lungs because they were premature. He had a leak in his lung so they had to put a chest tube in to take out the air that was leaking so his little lung could heal. After a week they were finally able to take that out. Next step was to start weaning him of the ventilator. On July 3rd he was finally off! Spent 24 hours on the CPAP and then moved to the nasal canula ( as seen in the pictures above).

During the first few weeks they noticed that he has some fluid on his brain. They watched it for about two weeks but on Monday July 5th they realized that they needed to do something soon for him so they moved him to Millers Children Hospital in Long Beach who has an awesome Neurosurgeon who can monitor him and who would be able to tell us what the next steps were. It turns out surgery was the next step. On July 8th we walked on the side of our little man as they wheeled him to the OR. He went into surgery to have a reservoir put in his head so they can start draining the fluid that was putting pressure on his brain. The surgery went well and he spent the rest of the day sleeping. Our goal is to buy enough time for his brain to start absorbing the spinal fluid so he can avoid having another surgery (to put a shunt in). His surgeon will see him every other day to pull the fluid out until hopefully there is less and less fluid being taken out. Praying this fixes itself!

This might be alot to take in or I might have confused you...but to be honest it took me two weeks to even start understanding what was going on. But I swear I think I can become a NICU nurse now!

We seriously have the best group of doctors and nurses. We are so blessed to have so many people looking out for Ethan and for us. Doctors who are not even in his part of the hospital comes to check on him, nurses fight to be his nurse. This little one has something truly special with him...something everyone sees.

Brayden is already in love with his little brother. He asks about him everyday and he goes up to his picture that we have in the house and kisses it daily. We are so lucky to have these boys in our lives.

Welcome!

We started this so our family and friends can be kept updated on Ethan's progress. These past few weeks has been a rollercoaster for the four of us and we have tried to keep everyone updated as much as possible but to be honest there seem to be alot of days that we just dont feel like talking...so we figured this would be the best way :) We can not thank everyone enough for all the thoughts and prayers. We will post updates and pictures as much as we can.

xo