July 27th - Doc appt

Sorry about the sideways pic. I cannot get it to go the other way. You can really see her cleft lip in this pic.

She is really thinking about something. :)

Well, there isn't really much to say...... We were very disappointed as they changed our appt with the neurosurgeon from July 27th to Aug 18th. We were so excited to go there as they were to tell us if our little girl was going to make it or not. I am sure God has a reason for it and I know this is his will for us to wait, but it is just hard to wait.We went to the surgeon that will be doing her cleft lip/palate. It was a bit overwhelming but all of that will work out. They will not do any surgeries til she is 5 months old. She will have to wear a mouth piece until then. They have this new method out that just came to Iowa from New York. It lowers the surgeries they are to have. If she makes it, she will only have to have 5 surgeries her whole life on her lip/palate instead of 9-10. Her first one will be at 5 months, then 11 months, then 2-3 yrs old, another one at 9yrs old and the last at 17. After her first 2 surgeries she will have to be fed by a syringe as they are not allowed to suck on anything. She will also have special bottles to use. They will be squeezable ones. They said it will take 1 hr - 1 1/2 hrs to do a feeding. In her first 5 months of her life, (Before her surgery) she will be wearing a mouth piece. There are 2 different ones that she might have....1) It is a slip-in one that will be formed to her mouth. She will go to the doctor once a week to have a new one molded to her mouth as the mold moves her palate closer together to help decrease surgeries.2) The other one is a mouth piece that will be put in during a short surgery. Us as parents, will have to tighten the screws in her mouth twice a day until her first surgery at 5 months old. This also moves her palate and lip closer together.They will not know what mouth piece will work better for her until she is here. We did go to our regular doc appt also. They told us that her bubble has grown. We were a little disappointed as they said it wouldn't grow. There is now Brain fluid in the bubble as well. Her head is now almost 7cm and her bubble is 2-2 1/4cm. I asked the doc if we could start buying our little girl anything yet. He said 'No'. I knew that that was going to be his answer, but was praying that something had changed. I have gone to a few garage sales and bought a few things. I know I shouldn't but I wanted a few things in case she does make it. We added a few new ultrasound pics of her. You can see her cleft lip really well in the pics. She has really filled out and getting chubby cheeks. I just LOVE seeing her every month on the ultrasound. We treasure it! We are now going back every 2 wks. So we go back Aug 13th to our reg doc and then Aug 18th to the neurosurgeon. I will update after we go to the neurosurgeon. Please pray with us that we get good news. We know that she has the cleft lip/palate and we know that she will be mentally challenged but we do not care. We are just praying that we get the joy of having her in our life for years to come. She is a very active baby. She is kicking, hiccuping and moving around like crazy. God is using her for great things. We just need to keep our eyes on Him! We know we are not the only ones out there with challenges in our lives. We pray daily for those of you who we know are suffering! There has been many deaths and trials for so many. Our hearts go out to you all. We just pray that God's coming is soon!!Thank you for all your prayers, letters, cards and e-mails. We have a few down days at times and it is like God has laid us on someones heart that day, as those are the days we will get encouraging words.I ran into a friend last night at a garage sale and she was telling me about her trials with a few of her pregnancies. She was so encouraging to me!You can tell that God's handi-work was at work in those pregnancies. God carried her through and you can see that God had it all happen for a reason. That is so true! Everything happens for a reason and we might not know for years to come, but God loves us so much and doesn't give us trials for no reason. We just need to keep our eyes on Him.