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.