As most of you know, my little miss tiny was born 7 weeks premature. She had to stay in the NICU for 6 very long weeks. She had a number of difficulties including breathing problems (lots of apnea spells), eating problems (she couldn't have breast milk for 2 weeks after she was born because of stomach issues), she picked up a virus while in the NICU and had to be in isolation, which lasted 3 weeks!!! Her heart also had a hole in it, her Patent Ductuous Arterious (PDA for short) didn't close and actual got bigger after birth which is super rare. She fell in the 10% of the 10% of babies that have this problem. She had to go on some risky drugs to help close it or get surgery. Thankful through lots of prayers, the medicine worked with no side effects. She still has the hole, but it isn't very significant. She just has to see a cardiologist every year to get it checked. However, through all her problems, I knew she was going to be okay. She was actually one of the more healthy babies in the NICU and for that I was truly grateful.
It broke my heart seeing babies who were born so early their eyelids were still fused shut and were a mere pound. Or babies who couldn't eat at all because they didn't have a esophagus. They were actually growing one there at the hospital (what a modern miracle). Nate and I were and are truly blessed to have such a healthy baby considering how early she was and how fast she came. Through all of this there was so much support and love. It is so amazing to have such a wonderful family, caring ward, and concerned friends.
I am writing this post because there is one thing that not to many people know of that is also a concern for our Autumn. Autumn was born with Metopic Craniosynotosis. What is that you ask. Well it is when the frontal bones of the skull fuse together to early causing a triangular effect of the skull, making the forehead pointed and causes a narrowed effect of the sides of the head. Also a ridge forms from the nose up the middle of the skull.
Here is a picture to illustrate:
I don't know if anyone has noticed that my lovely daughter's forehead extends forward, or notice the ridge. As she gets older these abnormalities will get more and more pronounced, causing her to look very deformed. Also, because her frontal bones are fused they will be unable to grow as she grows causing brain restriction. This restriction could be harmful. So, due to this metopic synostosis, Autumn will have to have surgery on her skull in about 5 months. They need her to be bigger and stronger for the surgery. They normally do the surgery when babies are 6 months old, however since she was premature they want to wait till she is at least 8 months old. The surgery is very invasive and she will need extra blood for it. We met with a Plastic Surgeon two days ago, and he reassured us that he does this surgery often enough and hasn't ever had a problem, but it still freaks me out.
This is a picture a before and after:
It just breaks my heart looking at these pictures. I know it is for the best, but it is still so scary. They are going to actually pull her skin down over her face and cut through the bones and then flatten them. Our doctor said babies do pretty good after the surgery. Generally they stay in the ICU for a day and then in the hospital for 2-3 days and then they can come home without any meds. Seems a little crazy to me, but I am not a doctor. I am amazed that they can do this and I am thankful for competent doctors.
I know Autumn will be in good hands, but prayers are much appreciated. This surgery most likely won't happen till August. I am glad she is going to be stronger, but I wish we could do it now to get it over with. I am so anxious thinking of my little one going under the knife after all she had been through and being so young. Autumn is definetly a fighter! She is such a strong girl already. I know that she is going to accomplish amazing things in her life, because she has already overcome so much. She is my miracle baby. My rainbow baby after my dark storm. I love my Autumn. She is my everything!
You can see her triangle skull in this picture.
I still think she is the cutest thing ever!!!