Saturday, August 27, 2011

This week was a different feeling for me. I got really angry. The kind of anger that makes you scream alone in your car and you look like a crazy person. People that know me would probably say I'm very mellow but something got into me after I dropped my husband off at the airport. I think anger is good because I have felt very defeated over the last couple of weeks. Anger makes me feel strong.

This experience has felt like I am in the ocean, the waves keep pummeling me and it is getting harder and harder to stand up. First wave, spina bifida diagnosis okay this is scary but we can handle it and I stand back up. Second wave, I have complications from the prenatal surgery and I'm told it would be dangerous for me to have another child okay we can always adopt if we want more children and I stand back up. Third wave, my water breaks at 25 weeks and Andrew is born at 27 weeks okay thank God he is alive and I stand back up. Fourth wave Andrew is having a hard time and it is destroying me watching him struggle okay this time I'm barely standing up. Fifth wave Andrew is diagnosed with Tracheobronchial malacia, we are told he may need a trach and we will be in Philly for another 4 or 5 months okay this time I have had it with the ocean and I'm getting out. I'm sick of feeling pummeled. Andrew needs me to be strong and to stop feeling so defeated. I have never asked why me because Andrew is such a gift and I'm grateful God chose me to be his mom. However, I have asked why can't things be easier for him? Why does my little guy have to struggle so much? This experience in the NICU will never be one of those things I look back on and think "oh it wasn't that bad". It is that bad but I won't let it defeat me. I hope the anger stays with me while we are here. I feel like I'm more in control. I will stop feeling like a victim of our circumstances and I will be the best advocate for Andrew I can be. I need to be as strong as he is.

As far as an update on Andrew they have him sedated and on the vent until the end of Sept. This will allow him time to grow and get even stronger. They are going to do a bronchial scope the last week of September to see where we are with things. If he is stable enough I have asked the hospital to life flight us to the NICU in Denver, CO. I think being with my husband in our own home will make this a little easier. Of course only if Andrew is stable enough for the trip. Like I said I'm going to start making decisions instead of feeling pummeled all the time.

Thank you for the comments last week! They were all so sweet! I really appreciate people reading this and I also appreciate the comments people leave.

I'm still trying to figure out how to post pictures. If anyone reading this has an IPAD and knows how please let me know.

Friday, August 19, 2011

Our very lonnnnnnnnnnnnnng journey

Again I wasn't sure where to begin in this week's post. This was the most difficult week we have had.
 Before I get into the details...Andrew is fine now which I'm so grateful for.

Our very big scare:
Andrew and I had a great weekend. Andrew was doing fantastic. So fantastic they were going to take the breathing tube out on that following Monday (8/15). On Sunday (8/14) during the afternoon he started to desat (this means he isn't able to get oxygen to his blood). It was slow at first. He would desat and they would bump up his support and oxygen. He kept desating. Finally we were at 100% Oxygen and full breathing support...he was still desating.  No matter what they were doing he was still desating. Desating is very bad for various reasons. It can cause brain damage, it can make their heart you get the picture it is very bad. At one point while this was happening I asked the doctor if he was going to make it and she didn't know. She said to call the red cross (if your spouse is in the military and needs to get home for an emergency the red cross will help facilitate that through Mike's commanders) and get my husband back here. You can imagine how terrified I was. I thought I was breaking apart before well Sunday night was a million times worse. Luckily I have family that lives a half hour away. I called them to come sit with me that night. I couldn't have been alone.  My mom and husband were able to be here the next day too. My husband gets to stay until Sunday so it has been so good having his support. Thankfully Monday afternoon they were able to get Andrew to stable condition.

So fast forward to now. Andrew got a cat scan yesterday to see why this stuff keeps happening. We got the results this morning. He has severe Tracheomalacia. Which means his muscles around his Trach are floppy. So he will do well for awhile but then the muscles get tired and literally flop over. When they flop over he can't get air into his lungs. It explains why he kept having these crashes. It felt like a 5000lbs weight has been lifted off of me. Just knowing what is wrong makes a huge difference. I was constantly living in fear waiting for the next crash. Now they know what is causing it and will put a plan together to fix it. A yucky part of the diagnosis is we will be here for a long time. Next week is Andrew's actual due date (Aug 29th). I thought we would be in such a different place right now and getting ready to go home. The doc told us this diagnosis will keep us here another 4 or 5 months. They are going to keep him intibated for another month and then are going to do another cat scan. If the cat scan shows he still has it and it is severe they are going to put a trach in his throat. I think if I would have been told this a week ago I would be a wreck. After Sunday, thinking I was about to lose my son this doesn't phase me. My boy is strong! Spina bifida and tracheomalacia better watch out because I know Andrew will be alright.

So our journey in the NICU is a little longer then I anticipated. Hmmm maybe Andrew is an undercover Philly Eagles fan and doesn't want us to leave!

I'm dying to post pictures so I will try to get on a normal computer instead of my ipad next time and get some up.

Saturday, August 13, 2011


This blog will definitely be more upbeat. Andrew is back on regular intibation. Who knew I would be so excited about intibation but it is definitely better then the oscillator. He still has been having apnea and bradys. The docs were worried it might be because of problems with his brain so they did an MRI. I'm so HAPPY to say it came back normal. That is such a huge relief. Hopefully he is having these issues just because he is a preemie and will eventually grow out of them. They think his pneumonia is cleared up too. My son is the strongest person I know and he isn't even supposed to be born yet. To think of all he has been put through is crazy. He rarely cries and tolerates all these medical people messing with him all the time really well. I'm so proud of him.

I'm doing okay without my husband here. It is hard and it gets lonely but I know time will go quickly. We do FaceTime (similar to skype) and he gets to see the baby which is comforting to both of them. Andrew recognizes his voice and always opens his eyes when he hears him.

I haven't posted pics in the last two posts because I'm on an iPad and don't think I can attach them. I will try to figure out how to post soon. Andrew is really growing and over 4lbs now.

I hope everyone has a good weekend!

Saturday, August 6, 2011

I wasn't sure if I wanted to write a post this week. It has been a trying couple of days and I felt like my other blog wasn't that positive. I don't like having two yucky blogs in a row but I want this to be real so here I go...

As I wrote last week Andrew is having severe breathing issues. On Tuesday night the hospital called at 1:00am and said Andrew's heart rate dropped and they had trouble bringing it up. He has been intibated so this definitely shouldn't be happening. They had to put him on an ossilater which is another tube that goes down into his body and literally vibrates his entire body to keep everything going. We keep going through this cycle where he is good for a couple of days and then he crashes. Unfortunately each crash is getting a little worse. All of his blood tests are coming back negative. They tested him for meningitis which involved sticking a needle in his head and extracting spinal fluid from his fontanels. It actually wasn't as bad as I thought it would be. I don't think Andrew even cried when they did it. Thankfully that came back negative. Finally they brought the infectious disease team in to look at him. They diagnosed him with bacterial pneumonia in his lungs. They are putting him on a 7 day antibiotic cycle. I'm praying this will be an answer to what is happening. It is the most painful thing in the world to see your child struggling. I do feel better that the docs have an actual plan in place on fighting whatever is doing this to him. I'm going to think positive and know we are getting out of here eventually.

My husband also had to go to Texas for training for his job and I won't get to see him until October. It was so sad to see him go. I know it is even more painful for him to go and leave us at the hospital here in Philly. This experience brought us even closer. He has been my strength. I am counting my blessings though and know how lucky I am that he has been able to be with me full time since April. Most husbands here have to come on the weekends or a couple times a month so I do feel grateful for the time we did get.

Anyway sorry this blog is so blah...I swear next week will be happy and positive. I know Andrew is going to kick this thing and be breathing on his own in no time.