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 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!!