Tuesday, December 20, 2011

Happy Holidays!

I'm so sorry! I haven't updated this in so long! Moving and taking care of new baby has been a little bit busier then I anticipated. I hope everyone is having a great holiday so far. I know I'm so so so grateful for everything this year. Being home with my family is the best thing in the world. I never ever take it for granted.

Andrew weighs 11lbs and 7 ounces. He has come so far! He is still on oxygen but it is easy to manage. We have been dealing with so many preemie issues for so many months we almost forgot about the spina bifida but it came rearing its ugly head. We went to urology and they said Andrew's bladder isn't functioning well. He has way too much bladder pressure. A normal person has 40% pressure before they realize they have to go to the bathroom. Andrew's goes above 110% before he realizes he needs to go. So I have started cathing him. It is also very easy to manage. A little time consuming but he has been such a good sport about it. My heart broke for him though. Knowing he will do this the rest of his life is tough. However, I know he will know nothing else so it probably won't bother him. Being at Children's in Philly and looking at what some other families are dealing with I have to keep counting my blessings. Plus he is doing so well in other areas.

I hope everything has a great holiday!!!

Tuesday, November 15, 2011

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!

Tuesday, October 25, 2011


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!!

Friday, October 14, 2011

After 133 days in the Newborn Intensive Care Unit in Philadelphia Pennsylvania
we went home today!

Tuesday, October 11, 2011

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!

Sunday, October 9, 2011

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!!!!

Friday, October 7, 2011


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!

Friday, September 30, 2011


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.

Sunday, September 25, 2011

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.

Friday, September 23, 2011

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!!

Friday, September 16, 2011

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!

Friday, September 9, 2011

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.

Tuesday, September 6, 2011

3 months old!


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!

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 stop....so 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.

Friday, July 29, 2011

Long Road....

Well I think I jinxed myself last week by saying things were uneventful. This week was the exact opposite.   On Tuesday Andrew started having lots of Bradys (this means his heart slows down). Normally he has two or three a day. Tuesday he had over 20. On Wednesday he started going Apnic (this means he stops breathing). Wednesday night they decided to inti bate him because he could no longer breath on his own. So now he has a breathing tube in his throat that goes into his lungs that breathes for him. It was heart wrenching on Tuesday and Wednesday to see him struggling so much. As much as I didn't want him inti bated it is good to see him rest and not have to work so hard. The doctors aren't sure why this happening. We had a ton of tests done and they are tossing around a few things that really scare me like meningitis. We are praying it isn't something like that.  I had a few moments this week where I thought I was going to crumble and break. It is amazing when you think you absolutely can't take anymore you somehow make it through another day. We were so excited to get into the 3lbs area because it meant we could dress him and get him into a crib. That all seems so silly now. I just want him to breath at this point. I try to hold onto the positive things he is doing (like gaining weight) and remind myself I have to stay strong for him.

On a happy note my blog gives me stats on the number of people that come to this web address. It stated I had over 6,000 hits since May. That is amazing to me. I really appreciate all the people who take the time out of their busy day to read about what is going on. Also thanks for the comments. I love reading them and they never fail to make me feel better! Thank you so so so much!!!
Pageviews history since 5/1/2011 

I love his little chicken legs and feet! 

Saturday, July 23, 2011

34 wks and 7 wks old


This blog is going to be short because this last week has been pretty uneventful which in our world is a great thing. Andrew is really getting bigger! He weighs over 3.5 lbs. Normally at this point they would have us try to dress him and see if he can maintain his own temperature. If he can then he gets to go into a crib. I'm so excited for that day to come! Unfortunately because of his breathing issues we have to hold off until it is under control. We just have to wait and let him tell us when he is ready to start breathing more independently.

The picture below is from yesterday. We gave him a sponge bath and changed out his feeding tube and tape on his face. It is the first picture except for when he was born that we have without anything on his face. We were very excited to see him!

I hope everyone is having a great week!

Friday, July 15, 2011

Guess who weighs 3 pounds

Andrew hit the big 3 lbs a few days ago! We are so happy to get out of the 2 lbs area. I think it is a mental thing. 2 lbs just sounds bad. 3 lbs sounds tough and durable…haha. I was so happy for his weight gain but we have had some real breathing challenges. For the first time since Andrew was born my husband and I ventured out of a 10 mile radius from the hospital. One of us is always with him or near by. Well we thought he is starting to get a little bigger so it won't hurt to visit some family that lives a half hour away. Boy were we wrong!! We had such a great evening and our first home cooked meal in a long time. My husband and I looked at each other when we got in the car and said it was so nice to have a relaxing time. I swear two minutes after we said that the phone rings and it is the hospital. They said Andrew stopped breathing 7 times and needed to be resuscitated twice. We just got a brand new SUV that I'm still learning how to maneuver because I'm very petite and it feels huge. I floor it and try to get back as soon as possible while trying not to kill us. The whole thing was so crazy. They gave Andrew a blood transfusion and went back to the breathing device he had when he was first born. The docs think he just needs some time to mature his lungs. Needless to say we won't be leaving the hospital area for a long time to come! Our hearts always stop when we see the hospital’s number pop up on our cell phones. They never call with good news. So even when we aren’t at the hospital we are staring at our phone praying for it not to ring. You just always feel like you are on edge. You can never relax and if you start to something will pull you back in. I needed to give myself a little pep talk yesterday to get my spirits back up and to keep looking at the big picture. I know we won’t be in this place forever. At some point I will be able to walk with my little guy outside in his stroller.

Ryan Seacrest and Selena Gomez were at the hospital today. It was the cutest thing to see all the kids being wheeled out of their rooms and into the atrium with a team of nurses/docs behind them. A little girl got an autograph and she was screaming how it was the best day of her life. Seeing all the joy on the kids’ faces was amazing! The nurses were saying Ryan and Selena would answer some of the call bells for the really sick kids that couldn’t leave their rooms. Imagine thinking the nurse was going to walk in and in walks Ryan Seacrest. 

Looking at Dad 

Andrew's Temporary Home 

Friday, July 8, 2011

(32 weeks old) and (1 month and 1 week old)

This week is a big milestone. When I was pregnant and after I had my surgery I kept saying to myself if I can only make it to 32 weeks we will be in the clear for a lot of preemie issues. So here we are at 32 weeks. It isn't the way I wanted to get here but I wouldn't trade it either. I got to spend more time holding and seeing him so who can be upset about that. This week we have been allowed to hold him a lot more. I hold him in the morning and my husband holds him in the evening. The way we hold him is called kangerooing or skin to skin. It is to keep him warm since he can't regulate his own body temperature. I think even when he can regulate it I will still hold him like that sometimes. I love it! 

This week has been mostly good. He has been on his full feeds so he is slowly gaining weight. I'm hoping he will hit 3 lbs soon. It is such a slow process. One day he will gain and the next lose.  I wish I could feed him Big Macs...haha. We did have a set back with his breathing. We have been switching back and forth on different breathing devices to help him. I think the bigger he gets the faster we will get out of the woods with the lung and heart stuff we are dealing with. 

As much as I'm getting used to my life in Philly I spend a lot of time daydreaming about getting out of here. The things I'm looking forward to the most are seeing my dogs again, having my own stuff like bed and kitchen, baking and being a normal mom with Andrew. This week we finally started buying some baby stuff.  I'm really excited about a stroller we bought that converts to a jogging stroller. I love running and before I got pregnant I would see moms out running with their babies. I couldn't wait to do that. We are moving to Colorado after all of this is over (my husband is in the military) and I'm sure there are many great trails to run. Lots of things to look forward to! 

I hope everyone is having a great week! 

                                 Our guy without the mask on his face! 

Friday, July 1, 2011

One Month Old!

Another week down! Andrew is one month old. Even though he still is right around 2 1/2 pounds he looks so much bigger to me. I realized one of the positives of the NICU. When will I ever get the chance to sit and stare at my baby grow in front of my eyes? When you are home with a baby you have other things going on. At the NICU you are sitting in front of his incubator staring in with no other distractions. I know every little change that goes on with him. As crappy as some of this situation is I definitely won't take for granted this time I get to spend with him. It has been really great seeing him turn into a baby. That sounds weird but for the first few weeks he had a face only a mother could love. In fact I called him little Benjamin Button. He looked exactly like Brad Pitt when he was the "old man baby".  He is starting to get eyebrows and eyelashes. He opens his eyes and his skin is fitting his body better.  Now I swear he is the cutest baby that has ever been born.

Andrew had a pretty good week overall. There were some downs but as they say here it is all part of the NICU. If I hear "Two steps forward and one step back" one more time I may scream. I think once we get out of this two pound area and he hits three pounds he will be stronger and not have as many issues. At least in my humble medical opinion.

One of the nice things the NICU does is have some group things for the moms to do. For example every Thursday at 2:00 they have scrap booking in the conference room. I have been able to make some really great new friends. Being surrounded by families at the NICU and the Ronald McDonald house makes you feel like what your going through is normal because everybody else is too. If it wasn't for that I don't think I would handle this as well. Of course my husband is my strength and rock so he keeps me going too.

Our little guy! 

Friday, June 24, 2011

3 Weeks Old Today!

Andrew is 3 weeks old today! It is hard to believe three weeks have gone by. It is the strangest thing, time seems to stand still but at the same time fly by. I can't explain it but it just happens. Andrew weighs a big 2 and 1/2 pounds now. Keep growing little man! Some of the good things that happened this week are Andrew went up to full feeds which means he got the awful PICC line out. It is a line that went up his whole arm and into his body. It made his little arm look mushy. I was so happy to get that thing out. We can see his beautiful arms now without all the wires/needles. Andrew also moved to a different breathing device that is a lot smaller so we can see his face more. Unfortunately the reason for the move was his cartilage between his nostrils started to deteriorate from the prior breathing device. So far he has been tolerating the new one much better so I'm keeping my fingers crossed he can stay on it.  Also unfortunately Andrew tested positive for MRSA. It is a common hospital bacteria. 50% of the babies in the NICU tested positive for it. It isn't something to worry about too much we just have to keep an eye on it.

It is crazy how you can spend entire days staring into an incubator. Every move he makes is the most fascinating thing! I bet that is how all new parents feel. I'm not sure if it is because my pregnancy hormones have left my body or I'm getting the hang of the NICU but I feel stronger emotionally and spiritually this week. However, my disclaimer is there are days I will still be a wreck. I'm sure I will have many of those as a first time mom, NICU or not.

I don't think I mentioned in my previous updates that we are staying at the Ronald McDonald house now.  When we first came to Philly we stayed in a hotel because I didn't want to stay at the Ronald McDonald house. I pictured a huge room with a ton of beds in it and shared bathrooms. I couldn't have been more wrong. It is like a hotel only better. We do have our own rooms with our own bathrooms. Every night at 6:00 different companies or restaurants come in and cater dinner for free. The food has been so good. Anything from Greek to Italian. We have also met so many great families here. To be surrounded by people going through similar things makes you feel like you are with family. I highly recommend staying here for anyone coming to CHOP for a long period of time.

We also have had lots of family and friends that have visited or are coming to visit over the next week which is great! We really appreciate everyone making the trip to Philly. We feel really blessed to have so much support around us.

This is our favorite new picture! How can you not melt looking at that face?

Friday, June 17, 2011

Week 2 in the NICU

Andrew is two weeks old today! We actually celebrate two birthdays each week. We celebrate his birthday out here in the world every Friday but the docs still count his age as if I was still pregnant with him. On Monday he will be 30 weeks old. We will continue to count his two ages until he is 6 months old. They said at 6 months he should start reaching the same milestones other babies do at that age. Andrew is so funny. Even at two pounds he has a personality. Out of the three babies in our room he is the smallest but has the loudest cry. If his pacifier falls out of his mouth he cries, when we change his diaper he cries...at first I freaked out when I heard him cry but now I'm getting better at knowing what is serious and what isn't. I guess like all new moms do.

Week 2 in the NICU was a little tougher. I think we got spoiled because our first week was pretty tame. This week we dealt with Andrew having a possible infection, internal bleeding, blood transfusion and he stopped breathing and needed an air bag to help him (usually he just uses a nose breathing tube which you can see in the picture).  I thought I was going to crumble under the stress of it all but yet you keep going somehow. My husband gave me the best advice and said I needed to give in to it. I wasn't giving in to our situation. I was fighting all of it. I kept asking myself why is this happening BUT it is happening and I need to face it. We knew going into all of this Andrew wasn't going to be born a bouncing healthy baby boy. Even without all this premie stuff he still has spina bifida. I need to get stronger for him and stop taking it all so personal. I do give myself a little break though and realize this is all new to me. I just need time to adjust. Plus what mother in her right mind wants to see her baby hooked up to all those wires and IV's. The situation is scary but when I put my hand in the incubator and Andrew grabs my finger and holds on for dear life I wouldn't trade that moment for anything in the world.

                                        Our sweet boy! 

Friday, June 10, 2011

Andrew is one week old today!

We have come a long way. Andrew celebrates his one week birthday today. He is definitely a strong little man. We have had some ups and downs but I'm happy to report mostly ups this week.  Some of the most positive ups has been that Andrew is still moving his toes/feet and emptying his bladder. Those are two things that spina bifida can effect. The doctors said it is still too soon to tell if that will be permanent but it is still good news.

It is crazy to think of everything that has happened in the three short months since we found out he has spina bifida.  Sitting here watching him in the Newborn Intensive Care Unit (NICU) is such an intense feeling. I really miss being pregnant and having him close to me at all times but I love being able to see him. Being a NICU mom is definitely hard. Not being able to hold and feed your baby or take him home with you when you leave at night doesn't feel natural. I have drawn a lot of strength from the other moms and dads that are here. It is good to be surrounded by people going through the same thing. You also are surrounded by little tiny babies that are fighting to be here and I can feel their strength. I'm so grateful that Andrew is here and he is a week old so I'm not complaining. I'm just adjusting to this new life. I split our journey up in four parts. The spina bifida diagnosis, the surgery, NICU and when he gets to come home so we are over half way there!

With all the excitement last week I didn't get time to blog about the night Andrew was born. On Thursday night (6/2) my husband and I were watching Glee which was part of our nightly routine. I started to feel a little feverish. I asked the nurse to take my temperature because I didn't feel right. My temperature came back normal but in my heart I knew this was probably the night Andrew was coming. I went to the bathroom and there was a lot of blood. They tried to stop the bleeding but then I started to have contractions. As soon as they saw the contractions I was prepped for surgery. It all happened within minutes. I was scared  and crying because  I knew 27 weeks wasn't as far as they wanted me to be. The doctor grabbed my face and looked at me straight in the eyes and said "Your body is no longer safe for Andrew. He will be better off out here." After she said that I was ready. At 11:20 pm I went into surgery and Andrew was born at 12:21 am. When he came out he was crying. It was the greatest sound in the world. He also tried to grab the sheet in between me and my belly. He came out fighting. Unfortunately because there was some damage done from the first surgery my c-section was over four hours long and I didn't get out of surgery until 3:30 am. My husband made sure I was okay and went down to the NICU to be with Andrew. So that is the story of how he got here. He is the most beautiful little bean and everything we went through together was so worth it.

                                            "Our Little Fighter"

Saturday, June 4, 2011

He is Here!!!

Well if I thought a lot happened last week I was in for a big surprise this one! Andrew was born yesterday on June 3rd at 12:21 am. He weighs 2 lbs and 12  inches long.  He is doing really well for 27 weeks. I will post more soon but I can  happily report Andrew and I are doing great. All the prayers and support really came true for us. Thank you so much!

I will also post more pictures as soon as I can! He is the sweetest little bean!

Wednesday, June 1, 2011

27 Weeks and Counting

I was so happy to get out of last week and into week 27. It has been a long week but I'm just so thankful to still be pregnant. Now to set my sights on week 28. I have to take it one day at a time and I just wake up every morning so grateful to still be pregnant. I had an ultra sound yesterday and Andrew is doing really well. His cerebellum looks great, ventricles normal size and he is still moving his legs. Unfortunately my amnio fluid measured at 3%. A normal amnio measures between 11%-24%. It breaks my heart feeling like my body is failing to make a comfortable home for him. I know I have a tear in my uterus so I'm not sure why I was expecting it to not be low. I guess just wishful thinking. It was hard for me to figure out what to write  this week because I feel so emotionally drained. I just keep thinking there is a reason for everything that happens.  Anything that has ever happened in my life I can always look back and see the reason. I know in the future I will see the reason for this too. I just wish I had a crystal ball!   Staying positive is the most important thing I can do for Andrew so like I said I wake up everyday being grateful. Being an inpatient at Children's Hospital reminds you to be grateful. Seeing the children with cancer and the parents that have to go through that is heartbreaking and reminds you things can always be worse.

My family came this weekend to pack up our hotel and take our dogs back home. I was sad to see them go but I know they will be happier back at home with more room to run around.
My mom gave me a spa day from my hospital bed which was awesome. I got a pedicure and facial. It was great doing something that felt like my life before surgery and the hospital. Something that made me feel like a normal girl again. My younger sister is also coming this weekend. She lives in Hawaii so it is huge she is able to come visit. 

I received a lot of emails from people that tried to post comments on here and couldn't. I'm not sure why it is being difficult but hopefully it gets corrected. 

Please keep up the prayers and hope that Andrew stays put for as long as possible! Thank you so much for all your support!! 

Thursday, May 26, 2011


Well it has been an interesting week to say the least. I want to start with good news though. First I had such a great weekend. My husband's family came out and visited. They made so much food for us. We do not need to go the grocery store for weeks. I also had my first outing which was fantastic. You don't realize how much you miss the feel of fresh air and sun until you don't have it for awhile. We went to old city in Philly which was really nice. They also brought my dogs. It was wonderful to see them! They have been my "children" for the last 6 yrs so it has been hard being away from them the last month and a half.

I also had a doc appt on Tuesday and Andrew looks great. He wiggled his toes which is a great sign, his ventricles look normal and his cerebellum is looking more rounded (which is what it should look like versus banana shape like it was).  

So unfortunately now for the bad news. At the doc appt they saw my amnio fluid dropped quite a bit. They did some testing and realized my water broke or I have a tear in my uterus neither are good. I have been re-admitted into the hospital, put on permanent bed rest and will stay here until Andrew comes. So no more hotel living.  They are currently dumping a ton of antibiotics into my system to keep any infection away. I'm 26 weeks pregnant now and the goal is to keep Andrew in there until at least 28 weeks. If he makes it past that it is all gravy but the goal is 28 weeks. Even though he will still be so early there are less complications then there are now at 26 weeks. So please please pray we can hold on. All the prayers have kept us going so far. I'm so grateful for all of the love out there and I know Andrew can feel it too. I will try to update the blog as much as possible.  I'm just really trying to put all my energy into staying healthy and keeping him in there. Thank you again for all the prayers! 

Thursday, May 19, 2011

I wanted to share a picture of who is coming this weekend!!!!!!!

Tuesday, May 17, 2011


Well I'm three weeks post surgery today. I can't believe how fast time has gone. I'm really surprised because I thought time would be slow with the bed rest but it hasn't been. I am so happy everyday that goes by and I'm further away from the surgery. Each day I feel better and better. Andrew has been moving a ton. Last night I think he thought I was a punching bag. He was jabbing me over and over. As much as it hurts I love it too. It reminds me why I got the surgery.

I had my 2nd post op appointment today and everything looks really good. He really is tough a little guy. My c-section is scheduled on Aug. 8th which is awesome because my lucky number is 8. So his b-day would be 8/8/2011. They did tell us only 30% of the women will actually make it to the 37 week mark. Most deliver early but here is hoping I'm in that 30%.

Other then that there isn't really a lot to update. I have been pretty tired but I'm getting my energy back so I'm going to have to come up with things to do while on bed rest. Luckily I have received lots of suggestions so I think I will manage.

My husband's family is coming out this weekend to visit. I'm so excited to see everyone. They are also bringing my dogs. I have missed them so much! I haven't seen them in a month. So a very fantastic weekend ahead of me!

I hope everyone has a good week! I will update again next Tuesday.

Monday, May 9, 2011

Bed Rest

Hi Everyone,

I haven't updated for the last few days because there really isn't anything to tell which is a good thing. I have just been laying low on bed rest. Bed rest is something I thought would be relaxing but I can definitely report it is not. You get so uncomfortable and I can only lay on my back which gets to be a pain. Although I can't complain because I completely understand why the bed rest is needed. Anything I have to do to keep Andrew in there I will gladly do. Luckily I had friends and family that came to visit to keep me company. Of course my poor husband is here 24/7 to also keep me company but it is nice for him to have other people here to take care of me to get a break. He has been a saint. This is definitely a team thing we have to do. I don't know who has the shorter end of the stick.

Today was actually an exciting day. I got to leave the hotel to go to the hospital for my first post-op doctor appointment. I'm happy to report everything looks really good. Andrew's back is healing nicely, he is kicking his legs around and still has no fluid on his brain. Seeing him look so good makes everything so worth it.

I hope all the mothers out there had a great Mother's Day!

Tuesday, May 3, 2011

I'm back!

Hi everyone! It is Kelly and I'm so excited to be able to write again. My husband did a great job for me in my absence though. As I mentioned his medical term understanding is definitely better then me. I don't know the meaning of 90% of the medical terms he was using. I just know it hurt..haha. Before I talk about the experience I want to say I would do it again a million times over. Seeing Andrew on his daily ultrasound and his spine/back looking like how it supposed to look made it all worth it. He is doing so well! He has no swelling on the area they repaired and he is moving around a ton which doesn't feel so great for recent stitches but who cares right?? I would much rather see him moving.

Right now I'm writing this from the hotel on my very strict bed rest. I got released from the hospital yesterday which was the best feeling. Although the staff at the hospital was incredible. I had my very own nurse assigned to me the whole time which made me feel very well taken care of. The only downside  is you get woken up every two hours to take pills and get vitals taken so you don't get a ton of sleep. A doctor came in several times a day too to make sure things were going well. As my husband mentioned my body didn't react well to the magnesium. I'm one of those annoying people that complain about having a headache and someone will ask if i want Tylenol and I say no. I hate taking medication. So to have a whole boatload dumped into my system put it on overload. The magnesium unfortunately got to toxic levels and effected my kidneys and lungs. I needed an oxygen mask to help me breath which was a little scary.  The most important thing during all of this was Andrew was still doing well. He was probably wondering what all the fuss was about. The good thing about your body is it makes you forget pain and the first few days after surgery are a blank slate. I think it was scarier for my husband and my mom watching the whole thing. Thank God for them. They had to work in shifts to keep cold towels on my body and my lips wet with a sponge. Anyway like I mentioned none of that stuff really matters because at the end of the day Andrew looks great and is such a little champ.

Again I have to thank everyone. Thank you to all the people that comment on this blog that I don't even know and to the ones I do. Thank you to everyone that sent flowers to the hospital. The nurses loved walking into our room because it smelled so good and like spring. The outpouring of support and love has really been amazing.

To be on the other side of the surgery feels so good. So many things happened this month so to have the surgery behind me feels awesome. Now I just have to follow doctor's orders about bed rest which sounds easier then it is. We find out on Monday what day in August they are doing the C-section so I will be really excited to have a goal to work towards.

Saturday, April 30, 2011

Post-Operation Day 2-4

Post-Op day 2 (27 April 2011): Kelly is progressing daily with all of the issues associated with having pre-natal surgery. She did not do too well with the Magnesium (Mg) drugs. Their primary action after surgery is to calm the Uterus and not cause contractions. However the drugs do have terrible side effects including causing her lungs to fill with fluid which, set her back one day from the original discharge date. The fluid in the lungs causes small portions of her lungs (Aveoli) to collapse which is called Actelectasis. This causes her oxygen levels to go down, which Kelly was in the high 80's. Also, her blood pressure dropped to 77/55 which was extremely low even for her. On two occasions, her Mg.were toxic levels which the medical staff reported was due to her small stature. For anyone reading and is thinking about the surgery, I would encourage you to do  your homework on the Mg. drugs and ensure to drink plenty of water before surgery (lots) because once she has surgery there is no water of any type. The only thing she was allowed to have was sponging for the lips and cool wet towels over the body and face. Additionally, since she has pulmonary problems and she was given a Spirometer, Diuretic medication and supplemental oxygen to reduce the fluid accumulation in her lungs and build her lung tolerance to normal breathing . The Spirometer, which Kelly absolutely hates is a device that she has to blow into 10x/hour every hour, which she was not compliant with because of pain and other issues. She also, had respiratory therapy come to help mobilize the fluids by doing a procedure called chest PT which basically a person is beating on her back. Another complication Kelly had was for some unknown reason her epidural quit working. So the Anesthesiologist had to place another line into her back at the L4/L5 level. However, this one stopped working as well about 8 hours later; Kelly was an unhappy camper. So the the next course of action to manage pain was to start her on a Patient Controlled Anesthesia (PCA) Dilaudid 1mg/hour. She responded favorably to it but was apprehensive because of the narcotic effecting the baby. Additional to note, from a family perspective, I would recommend packing plenty of different types of clothing warm and cold because of Kelly's fluctuating temperature. Andrew on the other hand is doing really well, his amniotic fluid levels were on the low end and heart rate was higher (138 BPM) than yesterday.

Post-Op Day 3 (28 April 2011) Kelly continues to get better each day, the lungs are sounding better and she actually was able to get up and sit in a chair for 3 hours. Andrew's amniotic fluid volume continues to build and the staff refer to him as a "Rock Star" Last night Kelly was able to get more sleep ~6 hours. Not a very exciting day which is a good thing.

Post-Op Day 4 (29 April 2011): Again more improvement in Kelly's status, lungs have no "crackle" but do have diminished lung sounds. Kelly is starting to eat more solid foods but did not tolerate crackers all that well. She was nauseated and vomited. I could not even imagine the pain from the wrenching of throwing up. On a positive note kelly was able to come off the PCA pump and start oral medication, one IV was taken out and the catheter is out. Andrew is a real trooper, I cannot wait to meet this little guy. I talked to Kelly's sister and she reports being overwhelmed by support from family, friends and even  unknown people. She said, "Andrew should run for President" because he has a huge following even before he is born. I would like to say thank you to everyone who has stood by us providing everything from financial, emotional and physical help. It is truly remarkable to be able to see the compassion people are capable of and to know that people are truly invested in this journey.

Post-Op Day 5 (30 April 2011) Kelly seems to be more of herself today. As I write this she is able to get out of her bed and walk to the bathroom independently. She was able to get a shower and change into some night gowns that we bought prior to surgery. No more hospital gowns! If you know Kelly at all this is a good thing. She likes to be fashionable even at the hospital. Andrew was looking good today. Things are looking up but we do have to be vigilant about compliance with doctors orders.

Wednesday, April 27, 2011

Post-Operation Day 1 and start of Day 2

First, I would like to preface this post by introducing myself to the readers, I am the eager father to be of baby Andrew.  Kelly did spectacular with the surgery and is currently recovering and sleeping for the first time in 48 hours. As everyone more than likely knows Kelly had pre-natal surgery to fix a neurological impairment called Myelomenigocele or an opening of the spine in Andrew's back at the L3 level.

April 25th 2011: We headed to Children's Hospital of Philadelphia (CHOP) from Lancaster (61 miles) for more screening and baseline testing including an echocardiogram which examines the fetal heartbeat, chest x-ray and more blood work. Last we met with the team of surgeons, neonatal doctors and anesthesiology to go over pre-operation instruction and the time line for surgery. After, another long day at CHOP Kelly and I went out for a long walk and dinner at White Dog Cafe to get our minds right for the upcoming day. The restaurant was three Victorian houses combined and prides itself on all natural and oraganic foods. After our meal the nerves really set in especially for Kelly, she was up all night thinking about the upcoming events with nervous energy. I really empathize with her and any of the other moms who have undergone this long journey, especially now, knowing what the individual goes through.

Day of Surgery 26 April 2011: We reported to CHOP at 5:30am for early surgery prep and go over last minute details. Kelly and I pride ourselves on the paying attention to all the details including being early for any appointments. So when we leave Philadelphia's Windsor Hotel and plug  CHOP address into the GPS, the receiver cannot pick up a viable signal. Personally, I was freaking out inside but wanted to remain calm so that I don't frustrate an already nervous wife. Anyway, after 15 minutes of maneuvering through the streets of Philadelphia we made it to our destination 10 min early. After getting into the building, Kelly was prepped fast with two IV lines, one in each wrist. Then Anesthesiology came in and placed the epidural in the L1/L2 space to numb the area around the umbilicus. Soon after, I had to say good bye and they wheeled Kelly into the OR. She does not remember any of this but I will never forget how hard it was to watch my wife and son move off into the operating room. After about 2 hours in surgery, I talked to the Pediatric Neurosurgeon and Maternal surgeon who had very little to say other than it went well " Thank God"about the surgery.
After the surgery Kelly was wheeled back to the room still in a stupor from the general anesthesia. The next 24 hours were a living hell for her, she was on a drug called Magnesium Sulfate to ensure her uterus does not start contracting. This drug has many adverse effects including: dry mouth and hot body temperature; altered state of consciousness; sore throat and to make the dryness worse she was on fluid restrictions. Mine and Kelly's mom's job was to ensure her lips remained wet and "no fluids". Kelly tells the Magnesium drug feels like the worst flu x 1000.  On a lighter note, she was being her self my little bull dog by trying to negotiate the nursing staff to allow her to have "ice chips"or "lozenge" to relieve the sore throat.

Post-Operation day 1 (27 April 2011): Today is a better day, Kelly is off the Magnesium drugs and starting to be more of herself. She is trying to sleep but the barrage of nurses, doctors and specialists are ensuring she only get little sleep. Additionally,  she is having problems with fluid in her lungs and low blood pressure, which the doctors are constantly readjusting meds. On a positive note, we were able to hear Andrew's heart beat (121 BPM) and able to see the fixed low back.  Hopefully better times are on the horizon.

Saturday, April 23, 2011

2nd Day of Consultation

I'm trying to update this as much as possible while I go through this process. It is a little difficult with not having a lot of time but I think it is important to catch what I'm feeling at the time versus a few days later. Anyway yesterday was day two of my consultation. Knowing I was a candidate physically really made going into day two a little easier. Day two started  meeting with the doctor that will take care of Andrew if he is born too early. She gave us the cold hard facts as I like to call them. One of the biggest risks of having this surgery is the possibility of him coming too early. The goal is to make it to 37 weeks but as long as he comes anytime after 30 weeks most of the risks should go down (I'm 21 weeks now). It is definitely scary but again I have to keep going with my heart that this surgery will help Andrew.

The next meeting was with the head nurse that went over what will happen the day of the surgery from a-z. She even walked us to the double doors  of the operating room and showed me where my husband would have to stop. It was very dramatic and kind of like the movies. He is allowed to hold my hand up to a  line on the floor and then they whisk me to the operating room. I could have probably been spared all the details of the actual surgery. I get squeamish over a paper cut so hearing everything that is about happen on Tuesday made me a little nauseous. I just kept picturing Andrew's legs moving on the ultrasound and if there is a chance to keep that movement I will do anything.

The third meeting we had was a hard one. I try to stay as positive as possible but I also have my down moments. This was one of them. A social worker took us on a tour of the Newborn ICU. We got to see where Andrew will go after he is born. Seeing the babies in the ICU was tough. A month ago at this time I was window shopping at the Baby Gap wondering if I would be buying blue or pink outfits. Now I'm touring the ICU in Philly. Knowing your baby is going to need to go to the ICU after he comes into this world isn't exactly how you picture it when you find out you are pregnant. The social worker could see I was starting to lose it and she made a really good point. She said if Andrew is here then he made it through the prenatal surgery and he made it to the end goal so I should look at the ICU as a good thing. This did make me feel better.

Well this will be my last post until about a week after the surgery. My husband will update the blog after my surgery. Please keep Andrew in your prayers this is a big week for him.

Friday, April 22, 2011

Great News!

I am sitting here at Children's Hospital in Philly at 6:00 am writing this. It is the only time I have. Yesterday was such a long day but great day. We left at 4:00 am and didn't leave the hospital until after 5:00 pm. Before I get into the details of yesterday, I want to say we got approved for prenatal surgery! My husband and I are so happy, relieved and excited to be able to help our boy with this breakthrough surgery. I believe all the prayers people were sending our way really helped!

For any mom's out there that might read this blog and are going through the same thing I wanted to go into my day yesterday so you know what to expect. For everyone else reading this blog, it might be a little boring.  The staff at CHOP  (Children's Hospital in Philly) is amazing. If you can have the surgery here I strongly recommend it. They are the top in this field. They have been doing this surgery the longest. They don't brag about this, it is just information we gathered on our own. My day yesterday started with a three hour ultrasound in 2D and 3D. I got to know Andrew very well. I could see every little detail on his body. He was very busy sucking his thumb for most of it. I fell in love with him even more.The ultrasound tech measures everything on his body hence the three hours. Andrew is doing really well. His feet look great (no club feet which is common with SB). He also has defined calf muscles which means he is moving his legs enough to gain strength. He also has no fluid on his brain. Another great sign.

Next was the Echo-ultrasound. They looked at his brain and his heart. Everything looked great. Then came the MRI. The MRI is very loud and the sound was scaring him. I could feel him wiggling around. Again everything looked good.

At the end of our day we attended meetings with the specialists. They explained every single thing Andrew would go through and what I would go through with this surgery. They really try to play devil's advocate and gave me some of the downside with this surgery so I know what I'm getting myself into. There are risks but I still know in my heart this is Andrew's best bet.

My surgery is scheduled for April 26th. My husband will update the blog after my surgery. Please keep the prayers coming I really belive they have gotten us this far.

Tuesday, April 19, 2011

April 21st is so close! It feels like it has been ages since we received Andrew’s diagnosis. In reality it has only been about three weeks. In that time we moved out of our home, packed for a potential move to Philly and, after six years with my company I have wrapped things up there. It is very strange making all of these changes not knowing 100% whether we will get this surgery. We have done all of this on hope and prayers.  I tried to explain to someone why I want this surgery so badly and the best analogy I could come up with is, if your child was in a car accident and they were hurt would you just wait to see if they would be alright or would you take them to the hospital right away? Of course you would take them to the hospital. I know my son is hurt and I want to try to help him immediately. I feel like this surgery is my way of helping him right away. It is amazing the absolute love you can have for someone you have never met.

I also wanted to thank our friends and family for all their help and support over the last few weeks. This weekend we moved (everyone knows how fun that can be). We had so many people volunteering to help we had to turn people away.  Family members and friends that work so hard for every dime they make gave us money to help pay for our trip to Philly and doing everything under the sun to make our lives easier from sending us cinnamon rolls so we wouldn’t even need to worry about making breakfast in the morning to offering up relatives’ houses in Philly to make our stay less expensive.  My husband and I are so grateful to everyone.  All of these people in our lives have made this situation so much easier.

Thursday, April 14, 2011

Today's Doc Appointment

Another day another doctor appointment! Today’s appointment was with my regular OBGYN. She monitors my pregnancy and listens to the baby’s heartbeat. It was weird being back at her office.  It was the place I went to pre-spina bifida diagnosis. After the diagnosis it has been all specialists at three different hospitals.  I have felt great so far during my pregnancy and I always felt like such “star” patient before.  Now going back today it was a different story. I can’t help feeling like maybe I did something to cause this.
My doc today was very nice. She thinks the prenatal surgery is my best option which made me feel better about moving forward with the consultation.  Everything else looked good too. The baby’s heartbeat sounds great. My favorite part of the appointment is hearing Andrew’s heartbeat. It is the best sound in the world! Please keep your fingers crossed and prayers going that things go well for us on April 21st and we are selected for the surgery.
Thank you everyone for all of your support! I don't know where we would be without it.

Friday, April 8, 2011

Good day!

We got a happy call today....the amniocentesis came back and the only thing that came back positive was the Spina Bifida. They were screening for extra chromosomes. Who knew I would be celebrating only having Spina Bifida but I will take any good news I can get.

Thursday, April 7, 2011

Met with the Neurosurgeon Today

Today was another big day. We met with the neurosurgeon that would be performing the surgery on Andrew after he was born if we aren’t qualified for the prenatal surgery in Philly. The neurosurgeon told us what to expect after he is born and the types of surgeries he will need. My mom and husband went with me to this appointment (as they have to all my appointments) and they both seemed okay with everything he was saying. They are both in the medical field so I think they have a better grasp on all the terms then I do. The doctor mentioned life expectancy for people with spina bifida and that is where I lost it. I hate to hear that term in relation to my baby. I know I have to be realistic but it is still hard. This particular doctor is in the top 7% in his field in the country which made me feel better. His bedside manner was a bit cold but I guess you can’t always have both.  He was not a fan of the prenatal surgery. He thinks there are too many risks with premature labor.  He did say he didn’t know enough about the surgery to feel comfortable saying for absolute sure it was not a good idea. I think I just have to continue to go with my heart and my gut that tells me prenatal surgery is still Andrew’s best shot.  

Wednesday, April 6, 2011

Prenatal Surgery

Currently my husband and I are in the process of trying to get approved for prenatal surgery that is done in Philadelphia at the Children's Hospital. In my heart I think it is the best thing I can do for my little guy. I know there are risks but I feel like I'm giving him a better chance by having the surgery. We go for the consultation on April 21st and 22nd. If things go well I will have the surgery on April 25th!  I'm scared but excited to be considered for this breakthrough surgery.

Our Familys' Journey into the World of Spina Bifida

I started this blog because the only thing that has gotten me through the last couple of days is reading other blogs. Hopefully one day I will also help someone out there.

Let me start at the beginning of our story. My husband and I were married on Sept 9th, 2001. We knew we wanted to have a family but also wanted to take the time to enjoy our marriage and fulfill some of the goals we set for ourselves. Our three goals before we tried for a family were buying a house, finishing our educations and traveling. We completed all of those goals and in February of 2010 decided it was time to start a family. I went to the doctor's to make sure everything was good, I started taking my prenatal vitamins and made sure to continue a healthy lifestyle. Fast forward to December and all of our wishes came true. We found out I was pregnant. I will never forget that moment. My husband was in the shower and I started screaming. He jumped out, grabbed his towel and ran out to find out what was happening. It was one of the happiest moments of my life. I did all the things first time moms do. I bought all the books and started researching what baby items were a must have. I day dreamed about the nursery and the outfit I would bring him/her from the hospital. I tried to picture if the baby would look more like me or my husband. Well fast forward again to March 30th 2011 (week 19 of my pregnancy), the day of our first sonogram. I should have sensed something wasn't right. I kept asking the technician if everything looked okay and she just kept murmuring "too soon to tell". Finally towards the end she said the words that changed my life forever, "something is wrong with your baby's spine". She told us we needed to see a specialist the next day. I remember trying to remain calm on the examination table and keeping my tears to a minimum. As soon as I could get up from the table I ran to the bathroom, fell against the wall and started sobbing. I knew in my heart it was serious. We saw the specialist the next day and she confirmed our little boy has opened spina bifida. Words like paralyzed, catheters and termination of pregnancy were thrown at us. The next few days were like living in a nightmare and not being able to wake up. I couldn't eat or sleep. I was on the web 24/7 reading about spina bifida. When I wasn't on the web I was sitting in silence, crying and just holding onto to my husband for dear life. It has now been a full week since I got my son's diagnosis and I feel more at peace. After finding websites and blogs that show healthy happy babies I feel like this is all going to be okay. It is a different journey then the one I originally had planned for my life but it doesn't mean it will be a bad one.