Surgery is TOMORROW, December 9th.

     Claire is doing well at home. As soon as we came home from the hospital on Thanksgiving, I tried to nurse     Claire. I wasn’t expecting her to catch on, since she had been using a bottle for the 3 days prior. However, she latched on right away and hasn’t stopped eating since! The only problem we’ve run into is that her diapers don’t really fit her little butt with the lesion in the way. This makes for A LOT of laundry, but we’re ok with that! At birth Claire weighed 7lbs 2oz, and was 20.5inches. When she was released from Children’s she was down to 6lbs 14oz. One week later she was back up to 7lbs 3oz, and weighed a whopping 8lbs yesterday!! We’ve been trying to get more fat on her before her surgery. I guess we’ve succeeded.

     Claire’s Surgery is TOMORROW, December 9th at 9:15am. We have to be there at 7am, and Claire has to stop eating by 5:15am. We’ll see how well that goes over. The nurse said that the surgery will take appx 4 to 6 hours. I told Paul that it probably would have been easier for us, emotionally, if Claire had had the surgery right after she was born. I think I was a little more mentally prepared for it and we wouldn’t have had all this time to bond. Now, I’m scared out of my mind. It’s ok though, I know a ton of people are praying for our little girl. Thank you! God has been so faithful to us, thus far, and we have no reason to doubt.

CLAIRE UPDATE!

The baby update from Children’s Nov 23rd

Paul called me later on Monday from Children’s. He said, “how would you like to bring Claire home for Thanksgiving?” Paul said that the doctors had run some tests, and did an ultrasound, and said that since the skin was covering the lesion that they wouldn’t have to operate for 3 to 6 months. This was a huge surprise, considering we were planing on her operation being that day or the next. He said that she was blowing all of the doctors away, and that she was even mad enough in her ultrasound that she sat up! They couldn’t believe her strength, and her muscle tone! We were so happy! They said she would probably be ready to leave on Wednesday.

TUESDAY NOVEMBER 24th

     I was finally able to get a shower and dress in some normal clothes! The hospital gave me a pass to go visit the baby, however I didn’t go over until after she was done with her tests at around 6:30pm. Mom and Kathryn were at the hospital with me, so Paul brought us all over to Children’s. I was hoping to try to nurse her, but she was so worn out from the MRI she had that day, and the drugs that they gave her, that there was no waking her. Plus, she was hooked up to so many different monitors that I was afraid to hold her. She even had one of those arm braces they put on baby’s arms when they have too many IVs sticking in them. It was so sad. I just kept thinking about what a friend had said to me, “ you’re never really prepared for seeing your child hooked up to machines and IVs.” (John Hobbs) Dr. Maugans, Claire’s Neuro-surgeon, came by around 8pm to tell us the results of the MRI. He said that everything wasn’t exactly as he had originally thought. In the ultrasound the day before it looked as if there were no nerve contents in the lesion, and he was leaning towards her not even having Spina Bifida. However, once they did the MRI they saw the nerves, and also the Arnold Chiari, which confirmed the Mylomenigicele. While this was no knew news to us (since we knew this before she was born), the doctor said that he would want to operate sooner than 3 months. Actually, he wanted to operate the next morning! It was hard to wrap our mind around postponing the surgery, to surgery TOMORROW! Thinking about how it would be an even longer time until I would be able to nurse her, bond with her and take her home, I asked if would could put the surgery off until after Thanksgiving. He said that he was still confident that she would be fine at home since the lesion was covered and that he would be on vacation the week after Thanksgiving. So, if we would want to postpone it for that amount of time, that was fine with him. So, that’s what we decided on. I needed to take my baby home to snuggle with and nurse her. I was really worried that if we waited longer, that she would have a hard time nursing later. We didn’t get back to Good Sam until 10:30pm. I was exhausted and in A LOT of pain! Who knew a 10 min trip across town could do that to you!

WEDNESDAY 25th

     Kathryn and Michael show up in the morning with Starbucks- a start to a good day! Paul had to be back over at Children’s at 10:30 for more testing. He came back and got me and my mom (who came over after Kay and Mike left) at 1:30pm. Claire was still in the ultrasound room, cathed, and waiting for an ultrasound of her bladder. We waited for over 30 mins, on top of the hour that the nurse and Claire had already been waiting. The doctor had ordered the scan, but the tech wanted to avoid it, for a bunch of silly reasons. So, after the hour and a half was wasted, and with no ultrasound, we headed back up to the RCNIC. Again I tried to nurse Claire, but she was exhausted and slept. Though, today was the first day I was able to see her eyes! They were blue. The nurses had to train us in CPR, how to lay her in her bed without hurting her back, and how to use the special car seat they lent us. (The car seat is one that she is able to lay on her stomach.) The Physical Therapist told us that Claire’s muscle tone, and her leg movement was REALLY exceptional. She said that her ankles were a little weak, but that we could work on that by stimulating her feet. The PT also said that she expects that Claire will be able to walk. I assumed that she meant with crutches, but she said that she would probably be able to walk without them. She may just need ankle braces. Of course, things might change with the surgery, so we are praying that she doesn’t lose any mobility.

*Other GREAT little miracles include:

*Originally we were told (before birth) that Claire would probably have problems with her bowels and bladder. Some children aren’t able to go at all and have to be cathed, and others have no control and go all of the time. With all of my research, it was VERY VERY rare for a child with even the mildest form of spina bifida to not have some issues with their bowels and bladder. It was something like 98% of babies with SB have some sort of issue. The doctor tested her little bum muscles and said that he thought that she would have good control of her bowels. Also, the nurse continued to cath Claire all day one day, to see if there was anything left in her bladder once she had wet her diaper. There was nothing! She has NO TROUBLE dirtying or wetting her diaper, yet still has dry times! Her bowels and bladder are fine!!! What a relief! The doctors and nurses had never seen anything like it.

*Claire was not born with Hydrocephalus (Fluid on the brain), and the doctors, for some reason, are predicting that she will never have it. Of course, they cannot say this for sure, because surgery may change things, but this is awesome awesome news! No shunt!

*Claire has Arnold Chiari Type II, where the cerebellum is pulled down into the spinal column. Also, with the MRI, they found a small cyst in the middle of her brain (they originally thought this was fluid) and the lining that is usually between the two hemispheres of the brain is not there. While this sounds alarming (I was alarmed!) They said that they don’t see any problems. They said that people could be walking around like that, who are just fine. It’s just that not every newborn gets an MRI or their head! As for the Arnold Chiari II, affects of this usually are messed up vocal cords, (hers are FINE), trouble swallowing ...(she great at that!), and sleep apnea. She has none of these! We are SO SO SO excited about how well she is doing.

     Claire was able to come home Wednesday night, but I was too exhausted to leave, so, because of me she had to stay another night at Children's. Eva came to visit mommy with Aunt Stephanie, Uncle Nick and Aunt JoAnna that night, since it was 3 days without being with her. Joanna and Eva weren’t technically allowed to be there, but we let them visit in the lobby. The next afternoon, THANKSGIVING, Paul, Claire and I were able to come home!! Yay! What a perfect Thanksgiving treat!

PS: Eva LOVES her new baby, and is constantly kissing and asking to hold her!

Just a Warning

There are A LOT of details on here.  I'm sure it will get quite boring for you, but, like I said in the beginning, I'm keeping this as as journal for myself also.  So, skip through whatever you want!  Also, sorry it has taken me so long to post.  We've been busy here!  I'm still working on the latest info for you...and hopefully I'll get that up soon!
   For more pictures visit this link....(i hope it works)

http://www.facebook.com/home.php?#/album.php?aid=2044442&id=144902592

November 23rd, 2009 Happy Birthday Claire!

The Amniocentesis

Monday morning we woke up at 5:30am to get out the door by 7am. Mom and dad dropped off the kids (including Eva) at Grandma Rowe’s while Paul and I went on to the hospital. Our Amniocentesis was scheduled for 8:30am. I was so so so nervous. I was worried about the pain, and if it would hurt the baby. I had read the day before that amnios hurts A LOT when the doctors stick you while you are having Braxton Hicks. I had Braxton Hicks ALL of the time. Also, I was half way hoping that her lungs weren’t ready for delivery, because I didn’t think I was ready. I wanted to push everything off as long as possible. We waited a long time in the waiting room, which again, I was ok with. Finally, when we were called back, they asked if I knew which doctor would be performing the procedure. Ha, I didn’t know, and neither did they! Great! The ultrasound tech hunted down some doctors and eventually they began prepping me. A cute, pregnant, resident actually did the procedure with a med student and overseeing doctor in the room. They started scrubbing my belly down with iodine and getting the utensils out. Once they said they were ready, I closed my eyes. Going through the skin didn’t hurt more than a shot, but once they reached the uterus, and then the placenta, the pain increased. The pain kept increasing as they extracted the fluid, and the baby was kicking violently. I was so afraid that she would kick the needle and was praying that she would sit still. I was so thankful when they were done. After it was over, Paul, who watched the whole thing in the ultrasound and my belly, told me that the needle was over 6 inches long. Shew, I was REALLY glad that I didn’t look!

     After the amnio we were sent to do NST to be monitored for 30 mins.  Ha...it was nice to lay down after that stressful proceedure.

The Birth

We were told to go to the ninth floor (Labor and delivery) to wait to hear what the results of the amnio were. If her lungs were good, then we were giving birth that day. After a half an hour, Katie, my life long friend, came in to see if I was ready to go back to the prep room. We still hadn’t heard anything about the results so we were confused. She said, “Oh, her lungs are good, you’re giving birth today!” Katie was so excited yet relaxed, and nonchalant that she made me feel the same way. I thought, “If Katie is ok with this, I guess I should be too”. She took Paul and I back to the prepping room and started everything. As we were walking back, I couldn’t help but think how weird it was that in a couple of hours my baby would be out of my stomach, without any work on my part. The whole “Scheduled birth” is such a foreign concept! Ha, Katie had someone else put the IVs in because she didn’t want me to hate her after all of these years! The prepping time took about an hour. Katie kept me calm by telling me funny family stories. While we were sitting there, I started having contractions, and I could feel them in my back. I still wonder if the amnio was what caused them. They eventually wheeled me into the operating room. My anesthesiologist, Mike, was WONDERFUL. Paul even said, he was the most caring man he’s ever seen, without being creepy. He was so good at putting in the epidural, and was rubbing my head and checking in on me throughout the whole surgery. Even before everything began he said to me, “we will be praying for you through the surgery and for your baby”. The whole atmosphere of the surgery room just seemed so peaceful and prayerful. It seemed almost that God hand picked each person who was present for the birth. Everything was as perfect as it could be. (Side note: those epidurals are the weirdest things! They work SO fast and it feels like the bottom half of your body isn’t really there.) I had always heard that even though you are numb through a c-section, that you feel them pulling on your stomach. I didn’t feel a thing! (Paul watched the WHOLE surgery...brave man.) Once they were ready to pull her out, they lowered the curtain so I could see her little body emerge from my belly. The cord was around her neck, and her head, I thought, looked a little blue, but a couple seconds later she cried. I knew then that she was fine. We were all surprised when we saw that her lesion was completely covered in skin! YAY! She even scored a 9 on her APGAR test! Fr. Nick, the hospital’s chaplain, was there for the birth, and baptized our baby soon after she was born. Ha, I think he actually baptized her “Claire Amanda” instead of “Claire Maiella”. Oops! The nurses took pictures and video taped the whole thing, and even prayed along with us when she was baptized. At the end of the baptism, there was a loud “Amen”. It was awesome! Claire was soon taken down to Good Sam’s NICU while they sewed me up. The epidural was so weird, because once it started to wear off, it moved up to my chest and felt like someone was sitting on top of me. Once we were finished in the operating room, Katie wheeled me into the recovery room. At one point Katie moved my leg and took my sock off. I wasn’t looking when she did this, but when I looked down I was surprised to see my foot and leg altered, because it felt like my leg was still straight! What a funny feeling! For the next couple of hours I made a game out of trying to move my toes and legs while I was still under the epidural. I got really excited when I was finally able to succeed! Oh the simple things! ( I felt like Wesley on the Princess Bride when he moved his thumb and nodded his head!) After about an hour Katie wheeled me down to the NICU to see and hold Claire before she was transferred over to Children’s hospital. She was beautiful, but it was so sad to see her little arm poked with an IV. I couldn’t help but think about how cozy and safe she was inside of me, only to be pulled out and poked as soon as she entered the world. At the same time, I was Ok with everything that was happening. When thinking about this moment in the weeks prior, I pictured myself crying when they took her away. I don’t know if it was all of the prayers that everyone had been offering, or if the mental preparation helped at all, but I was totally calm and at peace. It was just something that had to be done, and I was ok with it. Once they settled me into my recovery room, Paul left for Children’s, and mom stayed with me. (I had a private room! Katie said that they thought it would be cruel to put me in a room with another mother and baby, since I didn’t have my baby with me. That was a good enough excuse for me.) Kathryn, my sister, stopped on her way home from Steubenville to also keep me company. She brought Milka, and other goodies! Paul ended up coming back over and staying the night with me so my mom and sister could go home.

                                                                 

Claire's Cadillac

November 20th and 21st, 2009 Our Last Hurrah (before the craziness begins)

     The last couple of days before the baby is born, we tried to enjoy family time. Though we are very thankful for being able to stay with my parents, it was nice to just be Paul, Eva and I. It was a normal we haven’t known for a while. My cousins arranged for us to have a nice date package to go to the Newport Aquarium and out to eat at Brios. (THANKS GIRLS!) Eva LOVED the aquarium. She thought it was cool that she could walk over the water, yet could still see fish swimming underneath her. Also, when we were at the open tanks, instead of trying to pet the sharks, she, being the good Catholic that she is, kept blessing herself with the shark water. It was so funny. Her head was soaked!

The next day(Saturday) I wore myself out cleaning bathrooms for my sisters to come home, and doing last min laundry and packing. That night Paul and I had planned to have a nice dinner at Brios and then hang out with a bunch of Franciscan Grads who were coming into town to go to the Hofbrauhaus. As I was getting ready, I was overwhelmed by how fast everything was happening. I couldn’t believe that in 2 days I was going to have major surgery, my baby was going to have major surgery, and I was going to be separated from Paul and Eva. I broke down thinking about it all. Though I didn’t want to disappoint Paul by not going to Brios, all I really wanted to do was to sit down and play with my little Eva. With all of our running around visiting doctors, I felt like I hadn’t had quality time with her in a while. My wonderful husband didn’t mind, and we stayed home and played with Eva. Only when she was ready for bed did we go to the Hofbrauhaus. The night was perfect. We hung out with people whom we haven’t seen in 5 years, and all the laughter really kept our minds free from all the stress. It was funny too, because in the middle of drinking their Steins of beer, a bunch of our friends (at least 8) gathered around and prayed over us. People walked by saying “oh my gosh, are they praying?” Ha, way to always be a witness, right? Thank you Steubie Alum who gave us a great night filled with laughs, love and prayer! God knew we needed you at that time!

John Paul II

Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence. John Paul II

WE HAVE A DATE!!!......sort of.

      I had a check up yesterday. Jody, the resident, told me that she would call me today(Wednesday) with a date for the C-section after she scheduled it last night. So, she called today at noon and said our date was the 27th (day after thanksgiving) at 8:30am. However, Dr. Polzin called around 4pm. He said that the doctors over at Children’s couldn’t schedule everything that day, for some reason. The Drs at Children’s suggested that we either wait until after Thanksgiving weekend (At which point I would be 39 weeks and 4 days) or have the C-section before Thanksgiving. Dr. Polzin was worried that if we waited, I would go into labor before the scheduled c-section. While he said that the doctors adapt to whatever happens, he said he would rather have the “A-team” prepared and ready, instead of just pulling people together at the last min. So, he suggested that we have an amniocentesis on Monday (the 23rd) to see how well the baby’s lungs are developed. He said that with c-sections, it is more likely that the baby develop “wet lung” which can cause a lot of complications. I guessed that this happens since the fluid is not squeezed out in the birth canal. Also, he said this happens the earlier you take the baby out. SO, if the amnio checks out, and the lungs look good, then they might just keep me the rest of the day, and have the c-section then. It will either be Monday the 23rd, or Tuesday the 24th. I’m not sure if they are going to just play it by ear or actually have a date. I’ll have to ask that Tuesday at my appointment. I told Dr. Polzin my concerns about the amnio, since I’ve heard a lot about the statistics of 1 out of 400 babies die from the procedure. He said that it’s dangerous because they usually perform the procedure early on in pregnancy, and since the risk is that the mother goes into preterm labor, the baby doesn’t make it. Since our baby will be full term, the risks are the same (infection and labor), but the outcome isn’t the same. Sooooo....though I’m still VERY uneasy about the whole thing, (and am waiting for NORMAL life and delivery to kick in) I really trust Dr. Polzin. So, I guess this amnio and c-section are on the go. AH!