We are in Colorado!

Hi everyone,

I'm so sorry it has taken me so long to update this. We had so much going on with the move. We finally made it to Colorado. Andrew and I ended up flying. It was so much easier than driving.

Andrew is doing so well! He weighs almost 10 lbs. He did need to be put back on Oxygen once we got here because of the altitude. He is on 1/4th of a liter and he desats if we take it off. The docs said that was normal and he may need to be on it for a year. Other then that everything is good. We had our appt at the spina bifida clinic at the Children's Hospital in Denver and they couldn't believe how good he looks. They were so impressed with Children's Hospital of Philly. Denver wants to start doing the surgery next year and thought Andrew was a good example of all the great things that can come from the surgery. Even though he was born so early probably because of the surgery the good far outweighs the bad.

Being home has been better than anything I could have imagined. Having my family whole again has been amazing. The NICU seems like a lifetime ago now.  Looking back at the experience has made me appreciate everything in life so much more.

At first being home was a little overwhelming. I was used to a world with just Andrew and I.  I had no responsibilities other then Andrew. When you get home you have dinner to make,  a house to clean, other people to take care of ect.... but I have adjusted and things are even better. What a long long scary yet wonderful journey this whole thing has been and we are just getting started.

I can never thank everyone enough for helping me get through what I hope is the toughest experience of my life. I don't know how I would have managed without the love and prayers. Like I have said I fully believe Andrew could feel the love,  prayers and support  which helped us get through to the other side of this. The nurses even said they think Andrew was cured by love. From the bottom of my heart thank you.

I'm going to post pictures on this blog at the end of every month. So please check in when you have time!

Hi,

Sorry I didn't update on Friday! Things have been so hectic but in a great way. I left CHOP and went to a town a half hour away where family lives. I didn't want to go completely cold turkey from CHOP. I thought if anything happened I wanted to be close by. Then on Wednesday I travelled to Pittsburgh. Andrew did so well in the car. He just slept.  I'm going to Colorado on November 1st. It has been nice being home but I'm so ready to stop living out of a suitcase and just get to my house and settled.

Well having Andrew with me and out of the hospital has been the best thing that has ever happened to me. I keep pinching myself to make sure I'm not dreaming. I was worried I would be overwhelmed by everything but I haven't been at all. I have gotten the hang of giving him all his medications and his feedings. Just being a regular mom has been so fun. We go on walks and cuddle on the couch. He is my little miracle and I thank God everyday. I'm so thankful to everyone that prayed and sent love our way. As I said before I really believe Andrew could feel all of it and it helped him get stronger. We went to the doctor on Friday for a check up and Andrew now weighs over 8lbs!

I will post pictures as soon as we get out to Colorado!!

After 133 days in the Newborn Intensive Care Unit in Philadelphia Pennsylvania

we went home today!

I'm sorry for the short posts over the weekend. Things are so hectic but in a good way. My husband came to visit. It was so great because the last time he was here Andrew was really sick. So he looked like a whole different baby this time around.

Andrew has been doing really well with the feedings. He does breast and bottle. He is a little piggy. He also breathes completely on his own. We just have to do a few tests and we will be cleared for discharge (which will hopefully be Friday). I really can't believe I'm writing those words. A month ago we thought we were getting a Trach and going to be in the hospital another 4 or 5 more months. The whole thing is very surreal. I believed in miracles after he was born at 27 weeks but this just really reconfirmed my belief. He truly is a gift from God.

The testing we have left is a hearing test, car seat test and altitude test. The altitude test is to make sure he can breath in Colorado okay. They will put an oxygen tent over his crib and adjust the air to be the same as it is in Colorado Springs. Room air has 21% oxygen in it normally. In Colorado Springs it only has 18%. I'm hoping he will do fine with the small adjustment.

I'm getting a little nervous about leaving which seems absolutely insane. I have been praying, hoping and daydreaming about this for months. I think because I have been in in Philly for almost 7 months and in the NICU for 5 months I'm so used to my daily routine here. I'm at the best hospital in the nation and Andrew is receiving the best care. I guess going from that to being on our own is a little scary. Also the hospital staff has become like family. I will miss the nurses so much. They have been with me through some of the worst and happiest moments of my life. Even on the days they weren't taking care of Andrew they come in and check on him (and me). They truly care about him and get almost as excited as I do about his triumphs. Don't get me wrong though I'm so excited to go. Just a little nervous.

We didn't get a chance to post pictures but I swear there will be some coming! I will post as soon as we find out whether we are getting discharged this week. Fingers crossed!

I'm sorry I know I said I would write today. My husband and I have been in class today learning things for when we go home (feeding tube, CPR ect...) so I will write more on Tuesday. Everything is good though and we may (but I don't want to jinx it) be discharged this week! YEAHHHHHHH!!!!

Hi!

Everything here is good just very busy. I'm going to write an update on Sunday. My husband is coming this weekend and bringing his laptop so I will post some pictures too. I hope everyone has a good weekend!

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.