Seven

My baby boy is turning seven today. I wish I could just freeze time and keep him little forever. I think he's already too grown up. He would much rather watch ESPN and Star Wars than the Imagination Movers or Mickey's Clubhouse. He is smart and funny and is the best big brother. I am so proud to be his Mama!

16 weeks old and FINALLY healthy!!!

What a summer it has been! In the 16 weeks since our little peanut was born we have struggled to get her healed and healthy. As of last week I can finally say her back closure is completely healed and infection free! Ya-hoo!!

We also had some more good news this week. We had a visit from the NYS Early Intervention program to evaluate Lucy and any special needs she may have. We had a physical therapist and a speech language pathologist in our home. After spending about an hour with us they both looked at me and said well technically she qualifies for the program because of the spina bifida but there is really nothing she needs. Her cognitive skills are right on schedule and her physical abilities are as well. She has no delay or weakness in her legs, feet, or toes. None. At all! 

I know there isn't a doctor in the world that could guarantee what lies ahead for our little lady, but for right now we think that's pretty darn good news and we couldn't be happier!

Spina Bifida?

I feel like I had sort of a full circle spina bifida moment today. I took Lucy to the hospital to see how her infection had progressed. Finally some good news: after 26 days on IV antibiotics the PICC line can come out! As we sat in radiology waiting for the doctor to remove it, a nurse came in to check on us. She asked why Lucy had a PICC and I explained she had SB and had developed an infection on her back which required the IV. She looked sort of puzzled and said "oh well if she has SB it must be a mild case, huh?". I'm sorry, did you just say "if"? I am sure she did not mean much by her comment. She might have even meant it as a compliment. I just couldn't seem to get it out of my head though. Since our initial diagnosis almost seven months ago, my greatest wish was that our baby could just be normal. That she wouldn't have to stand out or be judged by her condition. Now in this one moment I felt like I was defending the fact that my normal baby did in fact have spina bifida. 

It was a two minute conversation with someone I will never see again. I think I was more shocked by how her comment made me feel than the fact that she said it. Everyone's SB journey is different. I know that there are so many families that experience much harder times than we have. But these last three months since our little meatball was born have quite possibly been the hardest times I have ever experienced. Two surgeries, five hospital stays in the first two months followed by 26 days of IV's, and ENDLESS hours spent at doctors appointments. We still have a few major hurdles to get over but in the grand SB scheme our little LuLu is doing pretty darn good. I think back to the day of our diagnosis. The day we found out we were having a baby girl. The day we were first given the option to terminate the pregnancy. It is such a difficult time filled with so many questions and almost no answers. Once we got to meet our sweet baby girl it made everything worth it. We would go through anything for her. So although I had a negative reaction to that nurse's comment, I hope one day my daughter can just laugh it off and be able to say "yeah, I get that a lot".

Meet Lucy Grace!

It's almost baby day!!!

Lucy's birthday has finally arrived! I came to the hospital to complete all the pre-op paperwork as planned. Unfortunately I think my nerves got the best of me. My blood pressure started at 136/81 and made a steady rise over the next couple of hours. By the time they decided to admit me it was 156/110. The good news is that within a few hours it was back down to 122/79...the bad news is I was already stuck here for the night.

I have so many emotions right now. Part of me still hasn't realized we are having a baby in a matter of hours. We are so excited to meet our baby girl, but so nervous about everything she will have to deal with in her first days of life. Part of me wishes we could fast forward a few weeks to when we are hopefully both well on the road to recovery and relaxing at home. I am frustrated and sad that after delivery we won't have our sweet little pink baby in the room with us for visitors to ooh and ahh over. I just want everything to be ok, and not to feel the weight of the world on my shoulders. We have been dealing with nothing but "wait and see" for months now. It is somewhat comforting to know that she will be here and we will be dealing with concrete problems instead of worrying about unknowns.

I keep trying to picture her little face. I know that once we meet our daughter we will forget there ever was a time she wasn't part of our family. I am so excited and anxious and nervous. Its 1:30am, I should be sleeping but I'm ready to have a baby!!!

Little Miss Difficult

It is already clear we are going to have a feisty little one on our hands. We have hardly had a single test where she cooperated. For the past month we have been subjected to weekly checkups, non-stress tests and ultrasounds. With each exam there is a certain criteria the baby must meet to be satisfactory. During the non-stress test the doctor is looking for a certain level of ups and downs in her heartbeat. After our first test lasted almost 40 mins passed the standard 20 mins, the nurse suggested the next time I bring a snack to try to stimulate the baby. So this week I came prepared with juice and granola. Lucy did cartwheels for the non-stress test and then completely fell asleep for the ultrasound. It's frustrating that because I fall under the "high-risk" umbrella due to the spina bifida we must be subjected to all these extra tests, even though we know there is nothing wrong...other than what we know is wrong. Other than the hole in her back, Lucy is perfectly healthy. Hmm. It's amazing how far the mind can progress in a matter of months. Our little peanut will surely face some challenges in her life. But in reality she will have much more in common with her peers than not.

7 weeks to go!

Wow, the last month has flown by! I am now 31 weeks pregnant so we only have 7 more weeks to go before we meet our little Lucy-Lou!! After a few months of chaos surrounding her diagnosis, it has been nice to have some time to just be a normal pregnant woman again. At this point though I sort of feel the chaos coming back as we approach the final weeks. Overall I am still feeling very good, just tired and feeling bigger by the second!

I am feeling nervous about my surgery and of course even more so for Lucy. We have a good team of doctors in place ready for her arrival though so at this point we are just ready to meet her and hold her and deal with whatever may come.

Been a quiet week around here...

After a difficult month it was nice to get back to normal this week. We finally got some snow (now that it's March!) so my sweet boys had fun playing outside. I even managed to give myself a manicure for the first time in a while! Sometimes the simple days are the best days!

You're too Good for Surgery

After many phone calls and a couple sleepless nights word finally came last Tuesday that our insurance company had approved our trip. Wednesday afternoon we headed out for a whirlwind 24 hours in Philadelphia.

We reported to the Children's hospital at 7:15am Thursday morning. After a quick overview of the day with our coordinator our first appointment was a detailed ultrasound which lasted close to 2.5 hrs. Of the two or three we had previously this was certainly the clearest images we had seen of our baby girl so that was a fun way to start the day!

After the ultrasound we met with the genetic counselor. She made a chart of our family history to help determine if there was anything in our families that would increase our risk for any particular condition (there wasn't). By this time it was about 10:45am so we were ready for a break. We had a few minutes to relax before it was time for the MRI. I had never had one before so I wasn't exactly sure what to expect. It was certainly a test of mind over matter. That tube is so tight! For the first few seconds I didn't think I was going to be able to go through with it. Then I just tried to close my eyes as much as possible to keep calm. It lasted about 45 minutes. I certainly would not want to do that again any time soon but it was manageable. I was so happy when they said it was over though!

It was now almost 1pm and we had not had any lunch. We stopped into the convenience store on the 1st floor to pick up a few snacks. Kenny had filled his coat pockets with snacks from home but our supply was dwindling! I was not allowed to eat much before the MRI for fear it would excite the baby and prolong the test....and we do NOT want to prolong the MRI. I even got Kenny in trouble with our "Mom" for the day when she caught him handing me a chocolate chip granola bar. I was just looking at it, I swear! Sorry Kenny ;o) 

Next on the agenda was the ECHO. This ultrasound is a specific look at the baby's heart which lasted about 30-45 mins. You would think that just laying on the table wouldn't be too hard but after hours of testing I was getting antsy. Thankfully we are down to our last two appointments of the day! Our next meeting was definitely the most informational. We sat down with the high risk OB who went over in detail the results of all the tests we had just had. Using a diagram of the body she went from head to toe explaining what issues we know our daughter will most likely have and what issues are still a possibility. The information we were given was consistent with the preliminary testing we had done at home, just a little more in depth. I think it was beneficial to us to have it presented in a head-to-toe manner so that we could envision our daughter as a whole person, and not just the defect we had been focusing on for the last few weeks. She told us that on the Spina Bifida spectrum our daughter is consistently at the mild end. She will most likely have a few manageable issues but will certainly be capable of living a happy and fulfilling life.

Our last meeting of the day was with the Chief of Neurosurgery. One of the first things he said was "well, you're too good for surgery". Our daughter's diagnosis is mild enough that doing fetal surgery is not worth the risk. This is good news! We know that we have done everything we could up to this point. Now we can try to relax and get ready to welcome our baby girl home in a few months! 

There are two key phrases I have learned go hand in hand with Spina Bifida. "Wait and see", and "but this could change". There is not a doctor on the planet that could predict with 100% certainty what our daughter will face in the years to come. We will arm ourselves with as much information as we can with the understanding that we will just have to hope for the best and take whatever comes our way! 

How would you like to pay for that?

Our consultation at the Children's Hospital of Philadelphia (CHOP) has been scheduled for over a week now. We are discovering however that it's not always as easy as just making an appointment. We now have to deal with insurance and provider networks and specialists. 

I have heard stories of people being denied transplants and other life saving procedures because insurance would not approve it. Somehow it doesn't seem like it could happen to you though. You assume that after paying hundreds of dollars in premiums every month the benefits will be there when you need them. 

According to the billing coordinator at CHOP our visit will most likely be approved, but not without jumping through a few extra hoops first. We also may not receive that approval until a day or two before. Nothing like waiting until the last minute!

Amnio Results

We finally got a call from the genetic counselor on Wednesday. The amnio showed an elevated AFP level which indicates the lesion is open. This doesn't really tell us a whole lot other than the fact that we need to pursue fetal surgery to prevent any further damage before birth. Next we will be going for a surgery consult at the Children's Hospital of Philadelphia. They have an intensive program of testing that will give us more information about our daughter's diagnosis and whether we are candidates for the fetal surgery.

It's a girl, do you want to keep her?

Friday morning finally came after an agonizing week of waiting. Kenny and I headed over to the specialist for our level 2 ultrasound. After waiting for more than half an hour we were finally escorted into the room. The ultrasound tech was very friendly pointing out femurs, kidneys and hands as she went. Then as nonchalantly as she pointed out the organs she said "I see girl". I actually almost missed it. I said "you think it's a girl?". It's a girl! We are having a girl! I looked over at Kenny to see the biggest smile on his face. The tech continued her scan as the news settled in. She said she had a few more images to capture and then the doctor would be in. I was certain that at any moment she would be telling us our baby girl was fine and we could go home to celebrate. 

As the doctor walked in the ultrasound tech asked him if he had reviewed our images. He said no. She said "I'm thinking "mening" not "myelo". Instantly I realized we were about to receive bad news. A couple minutes later the doctor looked at me and said very matter of factly "this is a classic meningocele". Our daughter has Spina Bifida. Instantly I was overwhelmed. I reached out for Kenny's hand and tried to understand everything they were saying. I heard words like "defect", "spinal cord", "amniocentesis", and "surgery". The doctor pointed out our daughter's defect on the ultrasound. He told us we would need more tests to understand the severity of her condition. He told us there would be other things to consider like having fetal surgery and whether we wanted to continue the pregnancy. We were told the genetic counselor would come speak to us about our options. A few minutes later the doctor and ultrasound tech left the room to give us a few minutes alone.

As the door closed behind them I unraveled. I wrapped my arms around Kenny and cried from deep in my soul. We felt such joy finding out our baby was a girl. Then just minutes later they were telling us she might not ever come home. There really aren't words to describe how devastating that is. By the time the counselor knocked on the door we were in a state of shock. The tears turned to questions but it was difficult to find words to articulate them. We were told the amniocentesis was optional, and not without risk, but we decided to move forward with it to get more answers. The counselor left the room to set up the procedure. At this point we had been in the office for more than three hours. Kenny was so strong. He looked at me and said "please don't cry, we have to be positive". So through glassy, tear filled eyes I said "I'll try".

After about 15 minutes the ultrasound tech led us back to her room. The doctor came in right after us and quickly began prepping for the amnio. I'm glad it was done so quickly because I would have been really nervous if we had to wait for another day. It really wasn't that bad. Certainly not something I'd like to do again, but not nearly as bad as you think it's going to be when you see the size of that needle. At this point we have to wait for the results of the amnio to decide what to do next. So again we wait...

It could be nothing, but...

Yesterday Kenny and I had our much anticipated 20 week ultrasound. We had been counting down the days for weeks hoping to finally know if we were having a boy or a girl.

After a while I began to notice the ultrasound tech acting flustered. She told us we would have to have another scan because the baby's position was preventing her from getting the necessary images. She also was unable to tell us the sex...which seemed like a big deal at the time. After the ultrasound we went across the hall to wait for our checkup. A few minutes later the doctor told us she saw something on the ultrasound. She told us it could be "nothing" but if it's something this is what it is. She then handed me a post-it with the word "Myelomeningocele" on it. She asked if we had any questions. I was blank. It had never really occurred to me that something would be wrong. It wasn't until we got home that I googled the word and realized our baby could have Spina Bifida. In one minute I went from thinking that not knowing the baby's sex was our biggest problem, to wondering if s/he would ever walk. Devastated is not a big enough word for the pain I was feeling.

Our doctor told us to wait for a phone call from the specialist. She told us we would go in for a level two ultrasound ASAP. In my mind I thought they would call any minute and we'd be out the door. No such luck. It was more than 24 hours before the office called. Your appt is Jan. 27th she said. Jan 27th?! It might as well have been Oct. 27th. How can I wait another seven days not knowing if our baby is OK?! Unfortunately we don't get to decide, so we wait...

My first paycheck!

I got my first paycheck today! I was so excited I actually took this picture of myself in my little cubicle at work. It feels great! One of the scariest parts of getting divorced was the fact that I had been a stay at home Mom for four years. Trying to find a job that would support a home for Noah and I was incredibly nerve-wracking. Today I feel an incredible sense of accomplishment! 

Me? Oh I work for the State.

I got a job! With the State of New York. That's crazy. Well that part isn't crazy, it's more about what it represents. A full time job has been the last step to moving forward with the divorce and moving forward as a single Mama. The single part I'm OK with. The not seeing my son everyday, not so much. Not only am I not OK with it, it actually takes quite a bit of effort not to become paralyzed by the mere thought of it. After being home with my Goose everyday for almost four years just sending him to preschool in September was a monumental task. Fortunately he LOVES school. I know he is ready, and I know he loves being with all the other kids. I just miss him. I am so lucky I was able to find a 9-5 job that will work with his schedule!