First Visit to Primary Children's Hospital

Yesterday Scott and I got to go up to Primary Children's to meet with the Cleft Palate Clinic. We were provided with a lot of information and good resources.

We were first given a list of wonderful support groups out in the community including a group that is local here in Utah with patients who use Primary Children's. I have joined this group and will be able to keep in touch with others out there going through the same issues at this time or who have been through these experiences which will be so wonderful.

Schedules for surgery times were given to us with some detailed explanations of what would occur during each surgery and the amount of time we will be in the hospital with Bailey for each. Whether her situation is just cleft lip, or includes palate, it looks like our first surgery will be within 6 weeks to 3 months after delivery. She will be meeting with her first Surgeon about 10 days after delivery and dates and what surgeries will be needed for sure will be discussed then. If palate is involved, it is looking like she will be dealing with this and having surgeries until about 14 years old. If it is just lip, it is approximately 2 surgeries that will be involved. So now, we just wait and see what all will come when she is born.

Scott and I were taught how to feed our little Bailey and explained to how feedings will work. Primary's provided us with one type of feeding system, and asks that we be prepared with another which they gave us ordering information for to have as back up if the first feeding system does not work. Bailey will have to be held almost upright to feed with these feeding systems to help prevent any formula going up past where the palate would normally be and into her nose to help prevent any choking or other issues. She will have to be burped a lot more frequently than a baby without a Cleft. We feel comfortable with these feeding systems and hope that we as well as Bailey will get the hang of this different style of feeding quickly. Family and anybody who will be watching Bailey will have to learn as well, and it will take time, effort, and practice until we all perfect her feedings. She will be required to complete a feeding within a half hour each time or we will have to see Speech Therapy/Feeding support for better training and help. This is to prevent her from burning too many calories with not having much ability to suck on nipples compared to how many calories she is actually taking in, as well as help her with not having FTT (Failure to Thrive). These feeding systems also allow us to be doing some of the work for her to help assist in her inability to suck and form a seal around a bottle nipple. This will be very different for us, but will be such a wonderful learning experience and we should be able to get the hang of it quickly. After each surgery, she will be relearning and struggle with feedings for just a short time, but will be able to catch on quick again each time.

Cleft palate babies are likely to have problems with their middle ear with fluid build up, so we were taught all about tubes and the possibilities of tubes needing to be put in to help with that just to keep us prepared for anything. They also are not likely to pass their hearing screening which is performed soon after delivery before you go home from the hospital. Meaning that she will need follow up with Audiologist to make sure that her hearing is not affected by the cleft. The majority of the time, reasons for them not passing the screening will be due to the fluid build up in the middle ear and the baby will not have a true issue with hearing.

I met with my OB for my regular bi-weekly appointment yesterday as well. We have been referred by him to MFM (Maternal Fetal Medicine) and a geneticist down at UVRMC (Utah Valley Regional Medical Center). They will be doing more Ultrasounds and testing on sweet Bailey to try to give us a better guess as to what is involved in her cleft as far as a more confident guess as to if palate may be involved or not. I meet with them next week on Tuesday Oct. 2 and should have more updates at that point.

We will start ordering and getting these feeding systems so that as soon as little Bailey decides to come, we are ready for her and will be able to help her feed. Other than that, the rest of preparing ourselves is more mental than anything else. We have the confidence we need that everything is going to work out in the end and that it will all go over well and smooth. It was a blessing and a comfort for us to have the opportunity to be able to meet with Primary Children's yesterday. We walked out feeling more comfortable with our situation as well as confident in knowing what to do and where to go from here. I did have a mental breakdown on the drive home from our OB appointment in the afternoon, but those will happen off and on as they have for the past week since finding out about this diagnosis. I am blessed to have an amazing husband to help support me mentally and emotionally through this, as well as a wonderful family who is here for me and gives me so much love and support as well. I find it best for me to handle and take in all the information when I actually talk about it, rather than keeping it in. This blog will be a great resource for me to get out my emotion and share our story with others to help keep me in an emotionally strong state to make it through everything.

Thanks for all the support and opportunities to talk about little Bailey and share my feelings.

The Call From Primary's

Today we got the phone call from Primary Children's. We are set up for an appointment to meet with them this Thursday. At our appointment they will go over the schedule for surgeries for our little Bailey as well as feedings and bottles. We will get to find out an estimate of what is going to happen from birth on. As we are still unsure if palate is involved, Primary's will go over everything as if palate is involved, and then if it ends up being just lip, that just makes all the less worry and surgeries involved after birth. They explained to us that 90% of cases cannot be determined by ultrasound if palate is involved or not, so we are all left completely in the dark on exact diagnosis until time of delivery. We were told it is best to prepare for the worst and if it is any less, we only have more to be grateful for. Ultrasounds make it really nice for us to detect some issues, but cannot completely allow us to fully diagnose issues like these. We have been told by some that it looks like palate is involved and told by others that palate is not involved, so we are of course still 50/50 and just waiting until we get to meet her to find out.

Thursday we will receive more information and will be all that more prepared for her beautiful entrance into this world. I will update more when I find out on Thursday.

Thank you again for all the love and support, comments and emails we have been receiving. We love you all!

2+1 Makes 3

The story of this beautiful princess that we will soon be welcoming into this world all began just over 3 years ago. Scott and I were set up on a blind date, not expecting much to happen or come from this, we started talking and planned our date. Not too much longer we fell in love and it all began. November of 2010, he asked me to marry him and I said "YES!" We were married in the LDS Mt Timpanogas temple December 28, 2010 on a beautiful winter day. We started into our life as a new family, both working and going to school. A few months into our marriage, we had decided we were ready to try to bring a beautiful life into this world. After quite some time of trying, we got pregnant, it happened! We were so excited and looking forward to meeting this child. I later miscarried, and we lost our first child. It was such a tragic time for us, but we picked ourselves backed up and kept trying. We bought our first home October 2012 in Springville, UT. After fertility treatments and a lot of worry that we would not be able to have our own child, we found out we were pregnant again in March 2013. Full of excitement, this was how we announced it to the world...

We started seeing the doctor, having all of our regular appointments, including getting to hear the heartbeat for the first time and just falling in love with our baby more and more every day. I had a gut feeling that this was going to be a baby girl, and we got our "official" ultrasound done at 20 weeks at the OB office finding out that this small child was officially a baby GIRL!!!!!

We were told that she was looking healthy are great, no abnormalities found or any issues discovered at this appointment! We were just the happiest parents we could ever be, seeing this sweet princess and knowing she was ours! We kept going about our lives from this point on as usual. Me continuing in Nursing school and continuing to work at the Hospital in L&D, and my husband continuing working hard to help support the family. We started spoiling this baby girl and bought as many things for her as you can possibly think of. We started decorating her nursery after my husband and father-in-law built a room for her in our basement right next to our bedroom. Her crib was put up, her dresser was repainted, decorations were put up, and she finally had a Nursery, just for her!  My dear Mom started spending countless hours making baby blankets and wonderful things for her and her room.

We were ready. Now all we needed is for her to come! We continued on waiting patiently for her, continuing to go to our regular OB appointments and continuing with life. I finally graduated Nursing School and became an RN, and my husband was continuing with working and going to school. I received some money for my graduation and was not quite sure what to spend it on. I thought about getting new pots and pans for our house, or even a new comforter for our bed, but just was not quite sure. My husband reminded me of how I always thought the 3D ultrasounds they do in the Malls were so amazing and how I had always wanted one. So he talked me into spending my money on that. We scheduled an appointment for a Thursday, and the night before, I kept saying I wanted to back out, it was too much money and such a waste, considering I was over 31 weeks at the time and we knew we would be seeing her in just under 2 months. Scott kept reassuring me that it would not be a waste of time and that it would be so happy for us and and incredible thing to see beforehand a really close image of what our baby Bailey would look like. Thursday, Sept. 19th, 2013, we go into the mall for our 3D ultrasound. Sitting in the waiting room, we were looking at pictures that Fetal Studios had taken in the past. Scott saw one with a baby with a Cleft, and turned to me asking, what do you do if your baby has Cleft. With the knowledge I had from working in L&D and Mom/Baby for years and just completing nursing school, I replied with a simple answer kind of just blowing it off saying "oh they just use special bottles and ways to feed and go though surgeries once they are born." And then we got called back, the ultrasound started! Yay, we were just so excited and had no worries in the world. The man that was doing the ultrasound had been an OB for 30+ years and was so nice and friendly to us! He gets going and all Bailey was doing was hiding her face, she did not want us to see her, she wanted to stay a surprise. We caught her in the middle of her naptime.

After being poked and prodded in the belly over and over to try to get her to move around, she finally started moving her arms away from her face, and we saw her cute little chubby face, in 3D for the first time! I just wanted to cry, it was incredible. That second alone made everything we did to get this ultrasound done so worth it and I forgot all about how much money I was spending on this. That chubby little face I was looking at was mine, that was my daughter. The doctor doing the ultrasound paused, highlighted an area on the ultrasound and started asking us if we "knew about this"...... sitting there unsure of what he was looking at I said, I don't know of anything wrong. He paused again for a moment and said, your baby has a Cleft lip and possibly palate. In shock, I looked at my husband and I just started to tear up, not quite knowing how to feel or what to think. He continued showing us her features and measuring her telling us she was about a pound heavier and 2 weeks longer and had a bigger head than normal at this stage. We knew we had a little chunk growing inside of me! Throughout the rest of the ultrasound, he continued to show us the Cleft and point it out for us to see. He was so good to be understanding that we had no idea of this "abnormality", he was patient and great to explain things to us. We left the mall that night, wondering where to go from here, having no clue what we were doing.

We knew our child was still perfect and that we would not love her any different with this so called "abnormality." It felt to be a part of who she is and will be. We were okay with it, and we were accepting it. We knew there was nothing different we could have done to prevent it and would never trade her for any other baby. As we got thinking, we realized that this was one "defect" that if we could draw out of a bag blindfolded that we would choose over many others, we were grateful. Over and over we kept saying how wonderful this is, because it can be fixed so easily. She is not different, she is not special, she is just the same as everybody else. This is what makes her who she is. Emotions running up, down and what seemed all over the place at this point, all while still trying to process everything, we got a hold of my OB and started making plans of where to go from here. I started doing some research, but did not want to look to far into anything because I did not want to scare myself from all the horror stories people seem to share with everything. So I looked up facts and started waiting to see what to do from this point on. I was amazed at how much support I was receiving from family, friends and co-workers. Everybody seemed to care and was worried about me and was trying to help me cope, knowing how hard it is for a Mother to find out something like this about their child and knowing of all the stress, hard times and surgeries ahead. I thank everybody for all the love, support and kindness. I would not have been able to keep my head held this high without all of that. My OB confirmed of her Cleft on Sunday Sept. 22nd and today, Sept 23rd, the office is starting to get me set up with Primary Children's Hospital and their wonderful Cleft Palate Clinic. We are now awaiting a phone call from Primary's to know what steps we need to start taking.

This has been an emotional up and down roller coaster for Scott and I as well as our families. I could not be more grateful for the experience we are going through with this. My Mom and I have been finding some wonderful support groups and books to help us as parents of a child with Cleft as well as some little picture books for Bailey once she is born that we can read to her. We found a little doll for her that has a cleft lip stitched in that will always be just like her. She can take that to and from the hospital stays for surgeries and will always have something with her that is the same as her.

My child is perfect, and will not be loved any less with this. She is the most wonderful miracle I could ever ask for, especially knowing I got to a point in life where I wondered and was told I may not be able to have children of my own. I wouldn't trade her for the world, and look forward every day to meeting her precious smile! I look at the 3D picture of her smiling continuously and can't help but smile and cry, knowing that is my Bailey Jade! She is precious and a daughter of God. She accepted these differences before she came to this life, just like we all accepted who we would be before we were born. What a strong little girl she was to choose to come to life with this. I couldn't ask for a better daughter to come into my life. I look forward to the struggles and trials and love I get to give to her. I'm now 32 weeks, and we are on the countdown! We will start meeting with Primary Children's and get to learn so much about how we will care for this Princess including feedings and surgery schedules. Thanks to all the love and support we have received and will continue to receive, we are so grateful to know the people we know.