Home Sweet Home!!

We are home at last!
The surgery last Monday went very smoothly, and Noah began recovering immediately. In fact, he recovered so well that when I called Darren from school Tuesday afternoon (I had gone in for freshmen orientation that day), he asked when I had last talked to the NICU. When I told him earlier that morning, he said, "Well I just talked to them, and they said they think Noah can go home on Friday." Folks, excuse the awful image this may form in your head, but I was so excited I nearly pooped my pants! We had thought after talking to the surgeon pre-op, that we were looking at today as the most likely day for Noah to come home. So to hear that we would be able to come home in just three days, I was pretty much walking on air.

So late Wednesday morning, they moved Noah in to the isolation room in the NICU, along with a cot for me so that I could room in with him until he was discharged and take over taking care of him. It was so amazing, like our own little place. I kept telling Noah he was going to have a sleepover with mommy :o) It was such a relief to know that the nurses were right outside my door if anything went wrong. I didn't sleep much that first night. Noah was taken off all of his monitors, and everytime he made a sound, I jumped right up to make sure he was ok. The second night was much easier on both of us, as he slept 6 straight hours! I was crossing my fingers that he would do the same when we brought him home.

In the meantime, Darren and I started spreading the good news, including to our two favorite nurses, who wouldn't be returning to work until after Noah would be gone. They were both disappointed they wouldn't be there to see us leave but so excited for Noah, Darren, and I. In fact, one of them even stopped in on her day off to hold him one last time and take pictures. We all exchanged information so that we can stay in touch, and they will definitely be at the top of the invitation list for his first birthday!

This is going to get cut short, as Noah is waking up and demanding some attention, but I'll post again soon about actually bringing him home and our first week together! In the meantime, enjoy this picture of him in his special coming home outfit!

Fingers Crossed

It has been way too long since my last post here. It seems like so much has happened, and yet now that I am writing, I can't think of anything to say.

I guess the most important thing to mention is that Noah will be having his g tube inserted tomorrow - the last step on the road home. I was able to sit down with his surgeon on Friday and ask lots of my questions. I have to say that as nervous as I am for Noah to have surgery, I feel great about his surgeon. He has amazing bed side manners, and one of Noah's nurse's did a little digging on him and found that he has great credentials. I really feel good about him, so that makes this a little easier (but only a little, God knows I am still worried sick).

Amazingly enough, his surgeon believes that as long as there are no setbacks, Noah will be able to come home sometime next week! It is so unreal to finally hear someone give us a date to go home! And it will mean that I will have a whole month home with him before I go back to work.

On a sidenote, Noah is getting to be the most adorable little butterball I have ever seen. He is up to 9 lbs 8 oz and 21 1/2 inches long now! Not bad for a 24 week'er weighing 1 lb 14 oz!

Happy Birthday!

Happy Birthday to Noah! He is four months old today (123 days to be exact, I somehow messed up the count in one of my earlier posts). It is almost impossible to believe. Our big goal now is to make sure that we are celebrating his 5 month birthday at home!

When I went in today, he had pulled out his feeding tube, so I was able to see his face entirely clear of tubes - what a treat! I took pictures, which I will try to post as soon as Darren uploads them for me ;o)

Noah also had his swallow study this morning. He is still aspirating on plain milk, and unfortunately, he also aspirated a little on the thickened stuff too today. So for now they will take a break on bottle feeding, as his airway is the most important thing to protect. When we have our team meeting on Tuesday, we will discuss what the best feeding options are for him to get him home as soon as possible.

Anna and Tom are both coming up this afternoon. We'll be going to dinner at Darren's favorite place, the Texas Roadhouse (I'm sorry you can't be there with us honey!), and of course visiting my little guy. Tom will be going to my parents place tonight, but Anna will spend the night here with me. And tomorrow she and I will go to the new apartment and set up Noah's room. I will definitely have to post pictures of that. Soooo exciting, I can't wait!

Click on Through

So I don't know how many of you are addicted to reading certain blogs, but I know I am. And during my daily reading, I came across a reminder. Rather than simply reading my favorite blogs through google reader like I normally do, I will actually click over to their site, and therefore get tracked as a visitor, allowing the blog author to make some extra money from their advertisers. (Man, I need to get me some advertisers!) It doesn't really take any time, and by mentioning the idea on your own blog, you are entered to win some awesome baby/kid gear. So that is what I am doing ;o) Click the button below for more information!

... And So Long O2!!!

It's official! Noah is now breathing entirely on his own! No more nasal cannula! In fact, I took it off him myself today! It's hard to believe, but his face is even more adorable, now that he has those tubes. All he has left is the thin little n.g. tube - and hopefully he won't need that much longer either.

He is continuing to work with the feeding team so he can start feeding 100% orally. Today he took a full ounce by bottle and would have taken more if they had let him. They are still using the thickened formula with him, to help prevent any aspirating. Tomorrow he will have another swallow study to gauge how far they can let him go with the bottle feeding. We hope that he can quickly master the thickened formula so that he will be able to transition to non-thickened sooner. Unfortunately, they can't thicken breast milk because it breaks down the enzymes in the breast milk, so we are hoping he will be able to make the switch sooner rather than later. In the meantime, I am still pumping away, and he takes my breast milk through his tube feedings.

We still have our team meeting scheduled for Tuesday, although now that Noah is doing so well, it looks like the purpose of the meeting will be different - preparing for Noah's discharge! In fact, the NICU's discharge nurse called me yesterday to get our new address so that she can begin the paperwork to get Noah enrolled in an early intervention program. It feels so good to know that we are almost there!!

Goodbye High Flow!

Today around 1 o'clock, Noah was switched off from high flow and on to low flow nasal cannula. Not only that, he was able to be weened down to just 25 cc's almost immediately!! (Remember, he started out at 3 liters of pressure when he was on high flow.) Just a whisper of pressure really. We are all so excited, including the neonatologist that is on this week. When I came in just before Noah's 3 o'clock feeding, and found out the good news, Dr. Vittorino came right over to say, "Isn't it great? I wanted to call you to tell you, if you hadn't come in when you did!" YAY Noah!!!

And, as if that isn't enough good news for the day, Dr. V also wants the feeding team to start working on the bottle with Noah tomorrow, as long as he continues to do this well with his breathing. I can't even explain how excited Darren and I are. We are both so proud of Noah!

Day 120

Today is now officially Noah's 120th day of life. It would be impossible for me to believe that Noah will be exactly 4 months old in just 5 more days if I hadn't been here living it day by day with him.

According to the NICU scales, Noah reached 8 lbs last night, more than 4 times his birth weight! It's amazing how quickly your arms get tired holding him when you don't have anything to support them. Lucky for me, Noah's favorite position lately is to be held up on my chest, with his head tucked under my chin. He has loved snuggling there the last couple of weeks, and I think it is due in part to some of the struggles he has recently faced. He just needs that little bit of extra reassurance you get from being so close. And to be honest, so do Darren and I.

Last week was a rough one for all three of us. Darren was feeling very low, having finally returned to work (we are so thankful to all of his co-workers at the state who donated their time to him, allowing him to be with us for so long!). In addition to missing having Darren around, I was struggling as we got closer to July 22nd, Noah's due date. Ever since Noah was born, I have felt guilty that my body wasn't able to care of Noah the way that it was meant to, and his upcoming due date was a daily reminder to me of what I had failed to do.

And poor Noah, who had been doing his best with his low-flow nasal cannula while learning to bottle feed, hit a dip in the road when (we think) he aspirated a little during one of his bottle feeds. He ended up needing to be switched to high flow nasal cannula with some antibiotics just in case he was developing pneumonia from the aspirate- not a huge setback in the grand scheme of things, but disappointing nonetheless. And to make matters worse, we learned on Wednesday (the 23rd) from his eye doctor that he would need to have laser surgery on his eyes to prevent his R.O.P. from progressing to the point where it would permanently damage his vision. Once again, a surgeon that Noah needed was on vacation, and I immediately prepared for battle mode to prevent him from having to be sent down to Boston for a third time. Thankfully, the surgeon agreed to come in early the next morning (5 a.m.!) just to do his procedure. Darren took the day unpaid to come and be with us. Obviously we were worried about the procedure, but knowing the overwhelming success rate they have for it, our real concern was that he had to be re-intubated while under anesthesia.

We were lucky though! With the help of some low dose steroids, Noah was able to be extubated to high flow cannula the next day. The neonatologists were still very concerned about his airway being smaller than it should be for his size, and they scheduled another bronchostomy to be performed Friday of this week. In the meantime, we asked to schedule a team meeting, including our favorite doctors, nurses and specialists, to come up with the best plan possible to get Noah home with us, to be held on August 12th.

Our stress continued this week, although for different reasons. We were finishing up our move to Livermore Falls, which included packing our remaining things (I still don't know how we have managed to collect so much crap!), bringing it to the new place, and cleaning the old place. Just to make things a little more difficult, in addition to Darren only being able to work on it after work each day, I had to travel back and forth from Portland each day so that we wouldn't have to give up our room here at the Ronald McDonald House. We certainly experience plenty of pain at the gas pumps this week! But we are excited about having a new home to bring Noah to, especially his nursery, and all of the space we will finally have.

While at the old place cleaning on Thursday morning, I couldn't stop thinking about the bronch that Noah had scheduled for the next day. Darren and I had been questioning in our minds since it had been scheduled whether it was worth doing, especially because some of our most trusted nurses were expressing the same feelings. He had already had two of them done, one here in Portland with the same specialist scheduled for the Friday bronch, and once down in Boston. The diagnosis was the same in both places - a "floppy" airway in laymen's terms, or tracheal and laryngeal malaysia and a lazy vocal chord in technical terms. Both places agreed that it was something that would only be solved with time and growth. And so Thursday while I was cleaning, I experienced a moment where I knew that it was not the right thing for Noah right now. It was a procedure that would require him being re-intubated (again!) and receiving more steroids to successfully extubate- and all of that just so that we could confirm what we already know. After checking with Darren to make sure he was on the same page, I called the NICU and spoke with the neonatologist about our decision. And for the first time since Noah was born, I was able to speak confidently and articulately to his medical team about what I thought was best for Noah. And when I was done, they agreed! I was so happy, and when I thought about it later, I realized that I finally felt like I was taking care of my son.
Now I don't mean for it to sound like Darren and I don't normally have a say in what goes on with Noah, or that we don't get to do all of the little things that are part of taking care of him, like baths, temperature taking, dressing, etc., because we do. It's just that up until that point, I had really relied on the medical team's guidance for what Noah needed, and basically gave my approval to whatever they thought was best. But in this instance, with support from some of our nurses that shared our concern, I was able to stand up and say, "this is what is best for my son, and I know it is because I am his mother." I was just so proud!

And in a nod to Celestine ( Sarah F. and my brother both know what I am talking about) it seemed like positive connections immediately began to pop up. His doctors decided he was doing well enough with his breathing that they could begin weening his pressure (tonight we are down to 1.5 liters, down from 3), and he could start bottle feeding again with thickened formula to hep prevent any more aspirating. And we are seeing some exciting developmental growth, including increased neck strength and turning himself from his tummy to his back while he is on his boppy. He has even started to coo occasionally when being held!

Now that's not to say that it is all smooth sailing of course - that's just not how it is on the NICU rollercoaster! Noah had a follow-up eye exam yesterday, and the doctor saw a little bit of bleeding in his right eye. But he is getting two kinds of eye drops now to clear it up, and the doctor is confident that it is nothing to get too worried about. But even with that little disappointment, we are feeling positive that Noah is on the upswing.

And while the NICU is the last place we wanted to be spending his 4 month birthday, we are confident that by his 5th he will be home!

Our Debut Post!

I have been debating for a couple of months now whether or not I wanted to start a blog about our journey with Noah. On the one hand, I loved the idea of being able to share our story with as many friends and family members as possible, with the convenience of not having to make many time consuming phone calls relaying the same information over and over again. On the other hand, I am a lazy procrastinator (one of the many reasons I am so bad at getting around to those repetitive phone calls I just mentioned). But now that Darren has gone back to work, and I have many hours during the day by myself, I have finally decided to sit down and reach out. I hope this blog will help me to express all of the emotions I experience in my life with my new family in a way that I can't normally handle in real time conversations with my loved ones. As those of you who are close to me likely know, I often have a number of strong emotions swirling around inside of me. And you probably also know that I don't always like to reveal them to people. So I hope that this will be a safe place for me (and perhaps sometimes for Darren) to express the daily ups and downs we are experiencing as a family, while finally opening up to all of the people who so clearly care about me and my family. It is the least I can do to thank you for all of your love and support.
So please enjoy the story of the Brann Clan's adventures together, and thank you for being a part of them!