Tuesday, September 30, 2008

We're all home

Jaxon came home last night. We are all finally together...and crazier than ever :)
Jax is still off the oxygen, but we have the huge tanks in the house just in case. I've never felt so overwhelmed and scared in my whole life. As expected, we didn't sleep a wink last night - but hopefully that will get better with time. Jason takes Brady and I take Jax. The problem with Jax is that he has to be fed every 3 hours, and it takes up to an hour after I practice bottle feeding, and tube feed the remainder. Then he usually spits up, throws up, or cries in pain from the reflux...so it's an exhuasting night.
The home nurse is coming to do an evaluation of the boys in a little bit, and Jax has his first pediatrician appointment tomorrow. I think my mom is coming to help me tomorrow. I've learned that I'll be living in pajama pants for a few weeks so I can lay down when I get the chance!
Our hands are SO full, but full of love too. Thank you to everyone's love and support (and of course prayers). Please keep them coming to get Jax at a safe/healthy size.

The boys first (of many) double ride!
Daddy keeping the boys quiet while mommy ran around with her head cut off trying to get organized with all the medications and food etc...

Sunday, September 28, 2008

No more oxygen!!!!!

This weekend has been a HUGE weekend for Jax! He has had NO oxygen since 6am Saturday morning!!
He must of heard my PLEAS to him to come off the oxygen this weekend, so he could come home without it. I told him to just leave it behind with the whole hospital experience....oh I hope he remains strong and stays off it.
The hospital told us that they may keep him until Tuesday or Wednesday now in order to monitor him for a full 3-4 days without it. It's best to ensure that he doesn't need it.
This is the BEST NEWS EVER!!!!
Lots of Love and Thanks to Nana Letts and Denise for their help and support this weekend. You guys are the BEST. You did an unbelievable job :)

Oh...and a quick shout out for Jay:
"WAY TO GO BREWERS!!!!"
First time to make the playoffs since 1982!!

Thursday, September 25, 2008

Jaxon is coming home...

...on MONDAY!

After a long talk with the neonatologist (again), we've decided that Jax could remain in the hospital for many more weeks. He just can NOT shake the need for that tiny puff of air he's receiving. So we've decided that we're taking him home on Monday with the oxygen and NG feeding tube. I'm scared out of my mind since there's another preemie with big needs in the home, but it has to be done. Jaxon deserves to be home with us and I can't stand him not being here. The daily routine of packing up Brady and driving to the hospital has become emotionally draining, and I can't stand having to call someone to see how my son is doing in the evenings any longer.

I know I can do this, and it will just take some time to figure out a routine. I think the unknown is what's making me the most uncomfortable with the whole situation. I worry about where he'll be when he sleeps and gets his feeds (especially since he has to be inclined). I worry about how to work the oxygen and how to bath him and move him around. How to recognize signs that's he not okay. It will take some adjusting to care for such a tiny man with big special needs, but we'll figure it out and hopefully he'll thrive because of it.

Wish us luck!

Monday, September 22, 2008

10 weeks old!

The boys are 10 weeks old and doing well. Brady is loving all his attention at home, but can't wait for his brother to come home. Jax is still on the tiniest bit of oxygen, and about to come off it any day now. His reflux is doing better, but still there. He is also doing better on his bottle feeds. The doctors are thinking early next week is a realistic goal for Jax to come home. We can't wait for the day he is home and tube-free! 

Brady starting to look at the camera now.

An average day in Jaxon's room. I bounce Brady with my foot while feeding Jaxon in the rocking chair.

Cutie little Jax snoozing away.
Brady's new found love...the boppy pillow!

Monday, September 15, 2008

We have a game plan

I had a long talk with the Neonatologist today. He agreed that something has to change for Jaxon. He said that Jax could be there for a month yet if things continue at this rate. I know I can get him to bottle feed faster at home with us, so we're going to try giving him a diuretic twice a day to see if that helps him get off the oxygen. We'll have to check his sodium and potasium levels often with using this, but hopefully it will all work out. If we can get him off the oxygen, we'll take him home with the NG tube and the diuretics. They will show us how to insert the tube as well in case he pulls it out (which he's known to do).
He hasn't thrown up at all today, but definitely still has pain and heaves like he's going to throw up. So my fingers are still crossed about the new reflux medication. The doctor is also going to submit a request to our insurance for in-home nursing. We'll see (and take) what we can get. This was my request after he asked if a family member or friend could come help us for a month...I laughed and asked if he knew anyone not working with anything to do!

Sunday, September 14, 2008

2 Months Old

The boys are 2 months old (9 weeks) or officially zero. Jaxon is still on .2 liters of O2 and feeding through his NG tube :( His reflux is NO better. He's in so much pain all the time. I was able to get his meds changed today from Zantac to Lansoprazole which is Prevacid. I'm hoping this medication works!! My heart just breaks watching him cry and not able to eat. He goes through so many clothes and blankets every day from throwing up. Something HAS to help him or I feel like he'll never get home. He's so sensitive that it takes all your time and attention to feed him and keep him upright, that by the time you get him comfortable back in his crib he either throws up (wretching in pain) or it's time for his next feed and you have to do it all over again. It really needs to get easier before he's home so its possible to feed Brady as well. Not to mention that Brady pretty much cries unless he's being held. They're going to have to learn patience at an early age!
I just wish I could take Jaxon's pain away.

Thursday, September 11, 2008

Term babies

Today was my due date for a single baby...what a curve ball!
Jaxon has been doing better on his oxygen. He was at .2 liters today. They said they even tried .1 liters and he did well for about an hour. They are being more aggressive since they think he's just being lazy about it. Since he's considered a "term baby" this week, they really want to see some improvement. It seems to be working! 
I've also made it clear the last few days that his progress is becoming emotionally draining for us, and it doesn't seem right. They are also holding him a lot more too...I think that helps a lot. God knows that Brady likes to be held constantly at home! If they can get Jax off the oxygen then he'll be coming home with his NG tube. I think we'll get him feeding better at home. Which I'll really have to figure out how to do by myself since Jason starts a new job on Monday! We're really excited about his new position. And I'm of course slightly terrified, but don't want him worrying about us at home while he needs to concentrate on the job. I've been waiting for both boys to be home where they belong for so long that I will definitely figure it out! 
I found out the boys aren't allowed to be in daycare for at least 1-2 years, and definitely not anywhere near RSV season. I guess I'm not surprised since they have such compromised immune systems. The doctor told me that a simple cold could definitely re-hospitalize them easily. We've been through way too much to compromise their health at this point. Jason and I will be getting flu shots, and the boys will be getting RSV shots monthly while I keep them away from crowds as best I can through this winter! The RSV shots are covered by insurance thankfully (they are $1,000 each and administered each month Nov-April) since the boys were born before 34 weeks. Apparently RSV is HIGHLY contagious to preemies and can be considered deadly. Adults get it all the time, but affects us as a cold, so we don't even know it's RSV. So if you visit...expect us to be coming at you with hand disinfectant!! :)

The boys still weigh about a pound and a couple of ounces different, which means they are both gaining steadily at the same rate. But a pound difference becomes less of a "difference" as they get bigger!
Jaxon - 5lbs, 5oz
Brady - 6lbs, 7oz

Uncle Craig and Aunt Shannon holding Brady while visiting with Jax between softball games.
Jaxon's first bouncey seat experience!
Brady in his bouncey seat at home (just to be fair).
Brady sleeping like a grown up in mommy and daddy's bed.
The boys today...really filling up mommy's arms!

Tuesday, September 9, 2008

MRI results...

...are good! We didn't get to speak to the Neonatologist, but the resident stopped in by us to tell us that the test results were perfect. So that's a relief. They plan on doing an upper GI test to check things out. They're still trying to rule out possiblities of why he can't feed or get his breathing down. Hopefully he's just pokey and needs more time.
The last 24 hours have been tough on all of us. The boys are each having reflux attacks now. Odd how it happens at the same time??? Brady woke up screaming at 2:30am with an attack, so Jason and I were up on the phone with the on-call doctor. And Jaxon had an episode today after his tube-feeding with me today. It broke my heart into pieces. I really hope his Zantac starts to help him soon. He's not taking his bottles very much at all anymore. I'm getting pretty sad about that. He's not coming home anytime real soon.

Friday, September 5, 2008

Pictures

The boys are REALLY starting to look more and more alike as Jax gains weight.

Jaxon's new room (711)
Jax finishing his food that he couldn't finish from the bottle.
Jax snuggling with mom.
Brady passed out on mom while she's on the computer the night before.
Brady (visiting his bro) wearing a cute shirt Auntie Sidney gave him.

Thursday, September 4, 2008

New Room

Jaxon has been moved from the NICU to the 7th floor in his own room. The NICU is very full and getting certain kids too sick for Brady to be able to visit I guess. So Jay and I were there this morning for Jaxon's "move". I feel like he's alone and that his care is a bit compromised without a nurse being right in his room with him to hear if he whimpers or fusses. A woman came in to take his blood and when I questioned her, she realized she was in the wrong room. I got pretty upset and cried. I felt like that would've never happened in the NICU with a nurse being right in the room. (sigh) The nurses we met in his new room were very nice, I just hope they don't think I'm going to be a crazy mom that they have to deal with. I did my BEST to not be confrontational telling them about the blood draw situation and asking specific details about security for Jax etc. They seemed to understand that I just felt very overwhelmed.
I think I was just comfortable where we were and the nurses in the NICU know Jax so well. I'm a little on edge knowing he's around strangers now. We will miss Lynette, our favorite nurse...and talking to Maureen on the phone at night (his night nurse).
I just wish he'd get the breathing/eating things down and come home! He was on .3 liters of oxygen, but when he got to the 7th floor they had to bump him up to .5 liters. Probably the stress, so hopefully that's already back down now as I type this. Speech therapy has been working with his feeds too. He has an MRI scheduled for this Monday, which hopefully finds absolutely nothing.
Brady is doing well at home. He still has a nurse (Stacey) visiting him once a week to weigh him and give him a quick assessment. He weighed 6lbs, .5oz yesterday and Jax weighed 4lbs, 13.5oz today. We're still always asked how many DAYS old Brady is when people see him.