Bailey Jade

Bailey Jade

Wednesday, October 2, 2013

Maternal Fetal Medicine Appointment

Today was our first Maternal Fetal Medicine appointment at UVRMC. I was able to meet with a very wonderful specialist who made me feel comfortable and at ease. She was so good to answer all of my questions as well as explain everything in such great detail.

To start off, here are Bailey's stats for the day (33weeks 2 days):
       Current weight : 5lbs 10oz (average for a 36 week baby)
       Current Feet length: 3inches -  (average for a 36-37 week baby)
       Hair: Long flowing hair
   She is extremely chubby and long, and may possibly be coming early due to that :) She is looking like she has her Daddy's chin and her Mommy's nose.

                                          Bottom of Baileys foot - Measuring 3inches

When starting off the ultrasound, Bailey was being just as stubborn as she is every ultrasound that we are trying to look at her Cleft. She loves to hide her face!! I'm just making a guess that her hand is going to be stuck to her face at birth haha! In this ultrasound, we were able to really focus in on her and try to look for any abnormalities that may come with a Cleft or anything else that may be wrong. We started at her brain, moved down and took a quick glance at her face and lips (what we could see with her little hands and arms in the way again), then moved on down to the heart, stomach, kidneys, bladder, girl parts, spine, then legs and feet. We were not able to find any abnormalities besides her cleft, which is great news. A lot of times, a baby with a cleft will have other issues as well. So far, everything is looking great.

Next step was to get a good look at her Cleft and face to make sure that she doesn't have any signs of Trisomy 13 (a rare genetic disorder in which the baby doesn't live long). Her face is looking great, no signs of anything else besides the Cleft. We were able to see that the cleft goes up into her nose and is involving palate. It was a little rough on me emotionally to first off hear just a couple weeks ago about Bailey having a Cleft, but then today to find out it does involve palate (which means it is a little bit more in depth including involving multiple more surgeries and feeding/speech issues). Though it is always hard to hear, I am still more than grateful that we were able to find this before birth and are now prepared for what all we think will be involved. The hardest part of all of this is not the looks, I think she is beautiful no matter what, but it is the fact that she will struggle with feeding and speech issues. I feel that is the scariest part being a Mom of a child diagnosed with a "birth defect", knowing my child will struggle and end up in multiple surgeries. I'm so grateful for all the support that I will have through all of this.

I have been planning on delivering at American Fork Hospital, where I work, and would feel most comfortable, but have been told back and forth that it may be in our best interest to deliver at a bigger hospital where there are Speech therapists and more experienced staff with Cleft palates. I have been worried and thinking about how hard it would be to switch OB doctors this far along, so that I could deliver somewhere else, and to lose that support system that I have with all my co-workers who will be there for me at delivery. Today, MFM (Maternal Fetal Medicine) confirmed that delivering at AF will still work out great for us. I could not be more relieved.

I was able to drive up to Riverton Hospital today and get some Pigeon nipples to help with feedings, and will be trying to order in the Haberman feeding system as well so that we have that as back up if Bailey can't use or become comfortable with the Pigeon nipples. It feels good knowing I have those ready for whenever she is ready to come, seems how she may be coming slightly earlier than we are expecting.

                                        Pigeon Nipples

                                              Haberman Feeding System

We have had a rough emotional past 2 weeks but are so blessed to have this sweet girl coming into our lives. I couldn't be more grateful than I am for her. Every time I feel her moving, I am able to see her cute little chubby face and wide smile pop into my head and I can do nothing but smile and be happy. I have the greatest support system around. The rest of our children will have a risk of getting Cleft's as well as Bailey's children, but that doesn't change a single thing for us. It does not make one bit of difference. We take what we can get and we accept the children that are meant to come down to us at this time from our Heavenly Father. If we experience this again with another child, we will be that much more prepared and experienced for it. These children come to homes where Heavenly Father knows they are meant to be. He gives us trials he knows we can overcome and he is there carrying us all the way through them. This always reminds me of the Footprints in the Sand poem:


  One night I dreamed I was walking along the beach with the Lord. 
             Many scenes from my life flashed across the sky. 
                  In each scene I noticed footprints in the sand. 
                       Sometimes there were two sets of footprints, 
                           other times there were one set of footprints. 
  
                                  This bothered me because I noticed 
                                that during the low periods of my life, 
                             when I was suffering from 
                         anguish, sorrow or defeat, 
                     I could see only one set of footprints. 
  
          So I said to the Lord, 
      'You promised me Lord, 
         that if I followed you, 
             you would walk with me always. 
                   But I have noticed that during 
                          the most trying periods of my life 
                                 there have only been one 
                                       set of footprints in the sand. 
                                           Why, when I needed you most, 
                                          you have not been there for me?' 
  
                                 The Lord replied, 
                          'The times when you have 
                  seen only one set of footprints, 
          is when I carried you.' 
                                                   Mary Stevenson


My Mom ordered a book for Bailey, called Lippy the Lion. I got it today and after my appointment, I came home and read it. This story touched my heart as I realized that as a Mom, though it is hard, we always want what is best for our child, and although letting Bailey go into surgery after surgery is only going to tug at my heart, I know in the long run, it will help her be able to eat and speak like a "normal" child and it is all for the best. It reminded me of how we have such amazing Surgeons here in Utah at Primary Children's and that they are looking out for us and will do a wonderful job helping my sweet girl. We live in such a great time with so many wonderful medical advances that I know my daughter will be in great hands.

1 comment:

  1. Every time I read your post I get all choked up! Following this little girls amazing story is just heart warming. While I don't have experience with the surgeries, I do have the experience with the doctors appointments and not knowing what is going on. Gavin (my youngest) was back and fourth from Primary Children's as well, his plates closed in his head early which was scary!! With parents like you and Scott this little girl is going to be just fine!! She's perfect in every way already!! Now, if she'd just hurry up!! lol but then again you can't rush perfection!! ~Caly~

    ReplyDelete