Warning mad elephant...

My mom was watching TV the other day and saw this scene from Dumbo. She said it reminded her of you and I and I agree.

This is exactly how I feel.

Jailed. Locked away from my baby. Locked away from our lives.

I even think the "danger" and the "mad elephant" signs are very fitting. At least I think the Dr's, and nurses sometimes think so.

I know sometimes I feel like a "mad elephant" fighting to protect her child.

I'm tired. Tired of fighting, tired of being thought of as a bitch, or at least difficult, by the medical staff.

I'm hitting an emotional and physical wall more and more often and sometimes I just don't think I can do this another minute.

But it only last for a while. Usually till I'm with you.

It's amazing how my love for you fills me and heals me. I know I am where I am meant to be. You are far beyond worth everything this is costing.

I know your Dad and I will keep on going till we have you home and well. As long as it takes.

But I'm seriously wondering if someday, in the distant future, when we are back on even ground again if I won't go through some kind of post traumatic stress from all of this.

I might just have to take a mental break or something and deal with all these emotions I'm just pushing aside that I don't have the energy or time to deal with.

Ah well, I doubt I'll ever have the time.

I don't think I will ever be able to watch Dumbo again without having flashbacks though.

*******************************************

So anyway on to you....

Your breathing has improved a lot but I honestly can't say if it's better than before the surgery or not. We still have hope that you just need more time to heal and, with time, we might see a great improvement. But both your dad and I feel we haven't seen anything yet to make us think there has been any great change in your breathing.

Today Monday, the last day of February, your still on the vent through the nasal cannula. We are decreasing the support a little everyday and your labs have been pretty good but not great.

We are going to give it another week to see what happens. Maybe things will change. I has only been a week today since your surgery.

I just can't let my heart hope. It hurts too much to hope right now.

Since I haven't taken any pics lately. I'm posting some videos I took of you. The first two are ones I took on the longest night of our lives.

As bad as you look and sound in these the funny thing is they were taken in the early morning hours after you were starting to show improvement. I wanted to show you a bit of how you were breathing and what you went through. Notice on the second one how deep your chest is retracting as you try and breath and remember this is when you were doing a ton better.

I should have done some in the early evening when you were really struggling but I was too scared to think of pictures or video then.

This one was taken yesterday while you were awake and playing with me. While we don't know how good your vision is I now have no doubt now that you can see. Your personality is starting to come out and it's so much fun to be with you.

I'm too tired to give a blow by blow of the last few days, though someday I think I should, so I will give you the short version.

The Dr's wouldn't start your feeds. I fought them and got them to start them.

The Dr's wouldn't increase your feeds. I fought them and got them increased.

The Dr's wouldn't increase your feeds more. Yes, I fought them and well you know the rest.

The Dr's stopped your feeds. Nobody knows exactly why. Maybe 'cause you were a little gassy, or because your tummy was a little distended, or because it was Saturday, or because they are crazy food Nazi's or something but...of course I fought them and of course I got them started again.

So now it's Monday early evening. The Dr's are only increasing your feedings by 3cc's every 12 hours for no apparent reason. At this rate it will take 2.5 days to get you back to full feeds. Way too long for you to be without proper nutrition.

So your dad and I are going to go have dinner before he heads back for the week.

and I will go and fight them.

Because I am a mad elephant and I must protect my baby.

To hope or not to hope...

That is the question.

Whether it is better to let our hopes get up and imagine ourselves heading soon for home and deal with how painful the crash will be if the surgery doesn't work.

Or is it better to figure we are staying here for the foreseeable future protecting our hearts and our hope and holding onto what little stamina we have left.

I think the second choice might be smarter but it's too already late or maybe it just impossible.

Our hopes are up. Your Dad and I are already making plans, and list, no matter how hard we try we just can't figure out a way not to get our hopes up. I guess there really isn't a way to protect your heart when you love.

So...

So we wait again, we hope again, and we love you.

Yesterday and today your doing well.

Your Dad and I just had to go home for the day to take care of business which of course landed one day after your surgery. We really didn't know what we were going to do we absolutely had to go home for the morning but just couldn't leave you alone the day after surgery.

Aunt JJ to the rescue! She came and stayed with you. She got here in the evening on Monday and stayed with you till around 3 am the got a few hours sleep and then stayed by your side till I got back the next afternoon. I just don't know what we would have done without her.

Within minuets of getting her she got your pain meds increased and you rested comfortably with her watching over you. Don't worry baby. Aunt JJ's got your back too.

Overall your doing really well. You are really swollen with all the fluids they gave you during surgery (your weight went from (3.5 kb to 3.75 kg) and with the increased levels of pain medication your getting they deiced to keep you on the breathing machine an extra day. You also needed another blood transfusion most likely from all the lab draws they are doing on you.

While you are on the breathing machine you are on room air and your labs look amazing so that's hopeful. Your feeding tube site is tender but looks great and is draining a tiny bit of fluids which is a good sign that your tummy is already starting to work again.

I was talking about how sad I was that I didn't get your footprints done or your first photos done like most babies do so Tania was nice enough to get your prints for me. I'm so happy I have them.


((Sigh)) look at your hair! I think you look like something out of the Mad Max movies.

My swollen half bald beautiful baby boy!

So today we are waiting for the Dr's to do their rounds to find out what the plans are for the day. We think they are going to start weaning you off the pain meds and get you off the breathing machine sometime today. We think they are also planning on starting your feeding again a little at a time.

Well what I do know is that we are one day closer to getting home no matter when that ends up being and that's a very hopeful, and happy thing.

Another Step Closer

Today we took care of two procedures at once. This allowed us to intubate you once. First the G-tube. Then the procedure to remove the flap of tissue that was obstructing your airway (Plasty for short).

The MI-KEY "Mickey" will allow us to feed you without having a tube in your nose or mouth. Not perfect but better. This tube ties into your stomach and helps keep your face free of tape, another plus. It is also much easier to clean and for Mom and Dad to use at home, benefits all around.

The plasty is something we have been asking for to help you breath easier. We hope that by removing the obstruction this will reduce your strider and you will be able to take a deep breath with ease. If your O2 and CO2levels are stable and you stop spending so much energy on breathing who knows you might actually start growing.

The day went well, we were supposed to have surgery at 3:45 PM but things changed and you went in at about 9 AM, much better. you returned at about noon and we were both here waiting for you.

You struggled a little with the breathing tube, it was too far in and actually went into the right ventricle. Well one x-ray and lots of tape later we thought we had it. One more x-ray and another adjustment and of coarse more tape and now you are good.

Mama is with you while I type. You are so strong. You do amaze me.

Mama is incredible too, being here by herself. She is getting some help but I do not know if the roles were reversed if I could do it by myself.

So you owe Mama. I would advise a flower and a card on every anniversary of the day you came home. Because with out our Lioness we would still be waiting to see what happens instead of another step closer.

-Dad

After the surgery's your color looks great!

it was not enough to give you a bad hair cut but another tube at least this one is breathing for you.

"M.I.C.K.E.Y. M.O......."

Quick update

Today I spent 13 hours at the hospital. 11.5 of those hours at your bedside. You were awake for most of the 11.5 hours. I have no idea why.

The good news is you were mostly happy and so alert. You rolled over on your side, wiggled, blew lots of bubbles (OK so the high flow helped with that) and kicked and kicked and kicked.

I sang every kid song I could think of till I ran out then I just sang whatever came to mind. You really enjoyed The Time Warp from the Rocky Horror Picture show but that might have been because I helped you do the dance while I was singing to you.

"It's just a step to the left...then a jump to the right."

I have enjoyed the last two days with you so much. Already you have so much personality and charm. You hardly ever cry and the nurses are always saying what an easy and happy baby you are.

Your Granny is coming tomorrow to see you. I know you so excited to see her. You also get to meet your cousins Maureen, Kelly, and Caitlin!

Then Daddy and Pierce will be here. All my boys in one place!

Gonna be another great day.

Just for the record...

As I write this it's 20 hours since the resident wanted to hold your tube feeding. You haven't spit up, or thrown up once.

Not even once.

Roaaaaarrrrrrrr!!

For today, tomorrow, and maybe the day after...

We gotta plan.....sort of

So as your Dad posted moving to Loma Linda is a no go for now.

Insurance companies by definition suck.

So I was talking with the resident taking care of you today and she went over what steps we need to do to get you home.

She agrees that the two major issues are your breathing and eating.

First we have to get the nap study done, and then maybe the sleep study depending on the results of the nap study.

Second we need to get the surgery done for your gastronomy tube (feeding tube). We could get lucky and get in for surgery today, or it could be in a week, it all just depends on our luck. After you get your tube in then it will be about a week and a half recovery before we get home.

So best case scenario we are looking at two weeks more or less.

We have to get out of the Ronald McDonald house on Saturday and stay out for two days before we can get back in so we are looking for a cheap hotel near CHLA to stay for Saturday and Sunday night. Then we will get back in RM house on Monday where I will stay till we go home (or hit the 28 day limit again).

Dad has to go back to work on Tuesday so it will just be you and I till Dad's next day off. That part kinda sucks a lot. I'm not gonna lie I'm dreading the thought of him leaving.

I'm thinking I will just stay with you for our usual 8 am till around 11:30 pm (with a lunch and dinner break).

The thought of you being alone from 11:30 at night till morning is killing me but I just don't see any other way of doing it.

So yesterday CHLA opened a big old can of getting it done!!

When I came in at 8 am you were already in the hall going down to the GI lab for your bowel study. You did great but they did find a tiny bit of Acid Reflux.

You hated every second of the test of course

I really wanted to get a pic of your stomach on the screen but I had to hold your arms down because you were PISSED!

Because of the Acid Reflux they have decided to do the Nissen surgery when they do the feeding tube surgery

Then in the afternoon you went for your sleep study. You need to sleep for the most part of an hour so you kept me pretty busy patting you to sleep and keeping you happy.

All of these wires were put on you! It took almost as long as the test.

It's the 6 million dollar baby! We can re-build him!

We wont get the official results of the nap study till later today but a little bird told me you did well with no major desats (drops in oxygen level) till they put you on 1/4 liter of oxygen. Then your level fell to 92% which is too low so I figure we will be going home on some oxygen but we will see.

Cross fingers and send good thoughts we get into surgery soon so we can start the countdown to getting home.

So now we've got a plan for the next few days let's see what the next few days has in plan for us.

Exactly what I expected I didn't want to hear

Well you had your hearing test done today and you failed. In both ears.

From what I understand this could mean a lot of things. That either you are profoundly deaf in both ears, profoundly deaf only one ear with partial hearing in the other, or it could mean that you have only partial hearing in both ears.

We wont know for sure for a few more months and more test but for sure you have a least a some degree of hearing loss.

I read that 90% of those with charge have some degree of hearing loss so I was not surprised but it was still hard to get the results.

I wonder if I will be able to torture you with my singing like I do your brother? Well if nothing else I've been holding you close to my chest so you can feel me singing to you.

Getting the hearing test

The insurance company is fine with us transferring to Loma Linda if our medical group will pay for it. Our medical group is fine with us transferring to Loma Linda if our insurance will pay for it. Both are saying heck no they wont pay.

So it doesn't sound like we are going anywhere anytime soon.

You poor Dad is spend endless hours on the phone with the various case managers and will continue to fight for the transfer but for now we are going on as if we will have to stay here.

The Dr's at CHLA have ordered your sleep study and a GI Dr to see you so we can get your feeding tube surgery done.

We think once these two things are done, and treated as necessary, we SHOULD be able to get home but we don't know how long that will take.

We are going to ask for a case conference with the Dr's to find out what has to be done, and how long they think it will take, till we discharged home.

They have put your feedings back to bolus (larger amount in a shorter amount of time) to get closer to what a regular feeding from a bottle would be like. You are doing well so far, and if you continue to do so we wont have to give you your feedings with a pump.

Daddy practicing giving you your feedings

The nurse giving instructions (note the illegal diet Coke on the table)

Could you be any sweeter?

I learned my first sign today Mason.

I love you Jelly. Always will.

Day of life 24...

Sounds so...official doesn't it? That's what the Dr's and Fellows say when they round on you..."This is Mason Lozano day of life 24"

So we had planed on your Granny coming to sit with you yesterday while Dad and I went to Aunt JJ's to spend the day with Pierce. But unfortunately your brother has - and I quote "raging double ear infection" according to our pediatrician Dr K.

He said that anyone who was going to be around you should NOT be around Pierce because of the infection risk. It was so hard not to see him but we are hoping to be home soon and get to be with him on a daily basis so that made it a bit easier.

So instead your Dad and I took the day off while Granny watched over you. We went to have brunch at this little cafe just down the street. It's made to look just like a cafe in Paris and did remind your Dad and I a lot of the places we ate while on our honeymoon.

We spilt an omelet and a big basket of bread, which while not as good as the bread in France, was dang good for these parts. Then we saw the movie "True Grit" which was great but left us somehow unsatisfied.

After the movie we came back and took a nap then met your Granny for dinner. I enjoyed it all (sad to say mostly the nap) but missed you every second of the day. After dinner your Dad and I took our normal evening shifts at your bedside.

You were quite fussy for me but also had 4 poopy diapers so I think your tummy was upset. I gave you a bath again and scrubbed you from head to toe. Boy do you hate it! It's kinda amazing how many colors of red you turn when you are mad.

The nurse changed your feeding tube (it's now in your nose) and tape on your nasal cannula so I got to see you with any tape and hardly any tubes for the first time since you were born. I tried to get a picture but it didn't turn out well.

Today, Sunday, day of life 24 not much is going on.

You are on only 1 liter of oxygen and your labs are so good they aren't going to repeat them for a while. They are going to keep you at 1 liter and not try and wean you till you have a sleep study done to see if you are having apneic (stop breathing) episodes.

I did a little test of my own yesterday when I was holding you. I took the prongs out of your nose to see how you did. You did fine for about 5 minuets then your oxygen saturation did drop without the oxygen. Your nurse and I were talking about it and it doesn't seem like you really need the oxygen (your on room air) as you need the "push" of air to keep your airway open.

This is just another example of why we think you need the surgery to remove the extra tissue on your vocal cords but that is a fight for another day.

You are up to 51 ccs of formula/breast milk and absorbing fine. Sometimes when they increase your feeds you have a bit of spit up and seem to need time to adjust to it but when everything is said and done you are doing great with feeds. Still no signs of acid reflux.

Your weight is something we are watching closely. You had been losing for quite a while but have been slowly gaining over the last few days. Last night you weighed 2.75 kg which is just over 6 pounds. Finally over your birth weight! Woo Hoo!

According to the assessment the occupational therapist did on you it's looking like a feeding tube is most likely. It would have been great if you could have just taking food by mouth right away but you will get there eventually.

The way your Dad and I are thinking is lets get the feeding tube in and get you home. Get you eating and growing and we will work on your swallowing and feeding by mouth at home.

As far as we know everything is a go as far as insurance is concerned for our move to Loma Linda. The Dr's at CHLA are good with us going and everything is set on their end.

Now we are just waiting for a bed at LL. Cross your fingers we get one tomorrow.

Dad and I are going to skip the late night shift and come back to the RM house and pack in hope that we get our walking papers tomorrow.

Here's hoping that on day of life 25 you will be tucked in at Loma Linda and so much closer to home.