Hi!

I hope everyone is having a good week. Things here are going well so far. Andrew has been learning to breastfeed and he is doing a great job. We are up to 4 times a day now. I think once we get home it will be even easier. Here it is so scheduled and he still has his feeding tube so I'm not sure how hungry he actually gets. He has been doing a great job though. He eats the amount he is supposed to. I'm really proud of him.

I leave this weekend for Colorado. I have been psyching myself up all week for this trip because I want to cancel it whenever I think about it. I know freaking out about spending one day away from him is silly but I have spent almost every waking moment with him since the day he was born. I keep reminding myself about some of the moms here that have to go back to where they are from for work and only get to see their babies every few weeks. If they can do that I can handle a day apart. Plus my poor husband that is thousands of miles away and doesn't get to see him often. Although I'm excited to say he is coming to Philly to visit next weekend and then hopefully after that we will be getting out of here.

I have been spending my time lately day dreaming of walks in strollers and snuggling without any wires attached to him. Right now I'm just enjoying all the things we never got to do before like a bath instead of a sponge bath, putting him into a vibrating chair and watching his eyes look at everything. The most rewarding thing of all has been holding him on my chest without any breathing tubes between us. I hold him all day which I'm sure parenting books would say is bad but I don't care. I'm making up for the 4 months I lost.


Once again thank you for all the prayers and support. I 100% believe Andrew felt them all.

I really don't even know where to begin with what has happened over this last week. As I mentioned in my short post on Friday Andrew's breathing tube was pulled on Thursday morning. I was literally shaking as they pulled the tube. I think I was almost as nervous as the night he was born. He did so well and didn't even miss a beat. He was then put on a breathing device called CPAP. He was on that for a day and the docs decided he was doing well enough to be put on nasal canala. This is huge because we thought he would be on CPAP for at least a week. Then there is another breathing device below CPAP called high flow. We thought for sure he would also be put on that for a week but no he just went straight to nasal canala. The next step after nasal canala is NOTHING! My little guy they thought was going to get a trach this week is almost breathing completely on his own! On Monday we start teaching him to breastfeed. The doc said this morning it is time to get our plan together for going home. It is difficult to even wrap my mind around any of this. I'm really trying hard to live in the moment and just be happy. I find myself smiling on the outside to people but inside I'm worried about everything that could go wrong. I think the ups and downs of the NICU has done that to me. I'm scared to get my hopes up because something could be right around the bend that will dash them. I made a vow to myself that once I leave the NICU I will be the positive person I was before I got here. I just know we wouldn't be where we are right now without all the support, prayers and thoughts from friends/family and people that I haven't even met. Thank you so much!!

Andrew was so excited to get his breathing tube out. He has been looking around non-stop. He picks his head up and moves it side to side. When he had the breathing tube he wasn't allowed to move and now he is making up for it. I'm just so proud of him. He has been so brave and strong.

Quick update

Hi everyone!

I don't have too much time today but I wanted to give a quick update. Andrew got his breathing tube out at 9:30 am yesterday. He is doing so well so far. I'm beyond proud of him. I will write more on Sunday. Please pray he continues to do well. I truly believe prayer has gotten us this far. Thank you for all the support!!

Our completely confusing and happy week!

Andrew on his way to the operating room     

Sometimes when I write these posts I feel like I'm recapping a dramatic soap opera on television. Well this week's episode was crazy! When we last left off we were letting Andrew rest on the vent until the end of the month. Every two weeks we get a new doctor. This is a teaching hospital so they do a lot of rotations. On Monday Andrew had a new doc. This one is a little more aggressive with treating then the others have been. So he says, "There is no reason to wait until the end of the month. Let's do a bedside bronchial scope and see how he is doing". So on Tuesday a ENT (ear, nose and throat) doc came to Andrew's bedside and stuck a small camera down Andrew's breathing tube. Within seconds of looking down he said, "I can see where the collapse is. Let's get him up to the operating room on Thursday so we can get a better look". After the ENT doc left our doc this week came by the room to talk to me. He said based on the cat scan Andrew had done in August and what they just saw with the bedside scope he is going to need a trach. He asked me if I wanted the trach put in on Thursday when he goes up to the Operating room or do I want to have it done in Colorado. I said Colorado. So he started planning our transfer for next Thursday. By later that afternoon they had the medical team assigned and the jet ready. Everything was moving really quickly.

So now for the good part. Andrew went to the Operating Room yesterday (they still wanted to take a look at his throat to make sure he is safe to fly for the transfer). The procedure took about 35 minutes. The nurse came out to the waiting room and told me to go to a conference room so the doc could talk to me. I was praying they were just going to tell me he was stable enough for the transfer. The doc came in and said, "everything looks great". I said you must have the wrong room. My son was diagnosed twice with severe Tracheobronchial malacia. The doctor said, "nope everything looks fine". ???? A family member that lives near by kept me company yesterday and we both looked at each other dumbfounded. Nothing is wrong?? I have been reading up on trach maintenance. I was as ready as you can be for my son to need a trach. The doctors are even dumbfounded. But yesterday's operation was the clearest view of his throat so if they say nothing is wrong with his throat then nothing is wrong. Yesterday I felt so happy and confused. The docs really don't know what to make of it. They think he either made a miraculous recovery or the problem is further down in his lungs. Let's go with the first option! The plan is now to stay here and not transfer. They are going to start weening him off the breathing machine on Monday. Basically we went from needing a trach to taking him off the breathing machine. I really don't even know what to say or think other then God is good!

I can't believe it is Friday already! I felt so bad for the last posting being late. I received lots of emails wanting to know if everything is okay. It made me realize even more how loved Andrew is. I can't wait to tell him about all the people that were cheering him on during his time in the NICU.

Andrew is officially over 6lbs. He weighed in at a hefty 6lbs and 2 ounces. I was 6lbs when I was born so he is now the size of a healthy newborn. Which makes sense considering he was supposed to be born on Aug 29th. He has been resting and hopefully his throat is getting stronger. I will be very nervous for the brochial scope but one day at a time. One of many things I have learned from this experience is worrying about things that haven't happened yet gets you nowhere.


I took a huge step this week. On top of everything we have going on with Andrew we are moving to Colorado. The movers are supposed to be at our house in Colorado Springs on Oct 3rd to move our belongings in. My husband is not getting done with his training in Texas until Oct 24th so he can't be there. I was going to cancel them coming but then I thought to have our house setup will make things so much easier. Especially if we transfer to Denver NICU. So I bought a plane ticket. Leaving Andrew will be so hard but it is only technically one day I won't see him. I fly out Sunday night and come back Tuesday morning. My mom is coming to sit with him on Monday while I'm not here. After seeing him all day everyday, not seeing him for one day will be hard.

My husband and I figured out a way to post pics. I just send him the pictures and he logs into the blog and posts them. I have to send the pictures I take on my phone versus the camera so they might not be the best quality. Speaking of my husband it is our 10 yr anniversary today! We went to Maine last year to celebrate knowing we would have a baby this year so it isn't as bad we can't celebrate together.


Also please say a prayer for my friend Annie(she commented on my last posting). She heard some bad news regarding her little one.

3 months old!

Hi!

I'm sorry I didn't update on Friday. It was for a good reason though. I had visitors so I didn't have time.

Andrew is three months old! He is still resting comfortably. He has been growing so much. He is almost 6lbs. He is over three times the size he was when he was born. Resting on the vent has been really good for him. He now looks like a small newborn baby. He even grew out of his preemie clothes which seems incredible. He also is in a crib now instead of his isolate. I love having him in the crib because it means I can lean over anytime I want and give him kisses on his head.

Our plan right now is just to have him sedated, resting and growing for the rest of September. Then they will do a brochial scope to see what the inside of his throat looks like. If they think his throat is making improvements then we will stay here for another couple months. If they look at his throat and see no improvement then we will hopefully get transferred out to Denver NICU and they will do the trach surgery. It is better for them to do it for two reasons, 1. That will be his regular hospital anyway so it will be good for them to get familiar with him and 2. It means he will be in the NICU for another 4 or 5 months so I want to be able to live at home and be with my husband.

Other then that I have been trying to venture away from the NICU a little bit more. I leave for an hour at lunch and just walk around Philly. It has helped me I think. I just can't believe it is fall already. We came here in the spring.

The anger I felt last week has left me. I think I needed that little surge but I'm glad it is gone. I didn't like feeling so mad it just isn't me. Plus how can I be angry when I have the sweetest little baby ever!

I hope everyone has a good week!

*Annie I tried to follow your instructions on posting pics but it wasn't working for some reason. I know I must be doing something wrong. I will keep trying!