The past couple years have been such a roller coaster ride. 3 ectopic pregnancies. 2 failed fertility treatments. Get pregnant with twins. Put on bed for about 2 months in hospital. Delivered twins early at exactly 33 weeks. 3 weeks in the NICU. You would think that after all this, things would settle down. I know that is what I thought. But boy was I wrong.
When Shane was born, he was on oxygen for a couple of hours and because of that we need to have his eyes checked. His eyes were asymmetrical and had major flat spots. Because of this, he had a head ultrasound and saw that his ventricles were enlarged and asymmetrical as well. One day in the NICU, one of the nurses heard a murmur so they performed an echo and found that the hole in the heart that is supposed to close after birth did not close. Because he had all these issues, the doctors recommend that we see a genetics doctor to rule out any syndromes that he may have that would have caused some of his problems. Whew! I think that sums up our time in the NICU.
Since then we have seen a Genetics doctor and all his blood work came back normal. They checked for any additions or deletions of his chromosomes. That is awesome news but doesn't necessarily mean he doesn't have anything either. They can't test for every single syndrome so we have to wait and see if any new symptoms appear that would lead us to a specific syndrome. But so far none of the doctors think he has anything besides back luck.
When he was about 6 months old we had a repeat echo done and the hole in his heart is tiny. No need for any more follow up care! It could still close completely but even if it doesn't, his heart is perfectly fine. Whoo Hoo! Praise the Lord!
When a baby is on prolonged oxygen and premature the doctors worry about ROP. ROP or Retinopathy Of Prematurity is when there is improper growth of the blood vessels on the retina which can cause damage to the retina. He shows no signs of this however he is extremely far-sighted and requires glasses.
Since his ventricles were enlarged he saw a neurosurgeon and got a MRI done which he had to be sedated for. The MRI showed his ventricles were enlarged. On a scare of 1 to 5 where 1 was normal, he measured a 2. So he was enlarged but only slightly. However, when we was measured at his 9 month appointment his head measured in the 95th percentile when he was in the 65th percentile. The neurosurgeon measured his head as well and we have another MRI scheduled for May 21st. They call it a quick scan because he will not be sedated for it. If his ventricles are more enlarged he may need a shunt.
Let's see, what else. Since he had major flat spots on his head we saw a plastic surgeon to see if he needed a helmet. His head shape is great now so he doesn't require a helmet. He does have a dermoid on his nose. What is a dermoid you ask? It is a skin-like benign growth. Apparently it is fairly common. It will need to be removed since it will continue to get bigger and bigger. They will wait until he is older about 2-3 yrs old to remove it since it will be easier to remove without leaving a noticeable scar. If he needs to be sedated for any procedure they would remove it then.
He also saw an ENT doctor (Ear, Nose and Throat) because of his increased upper airway noise. We have barium x-rays scheduled for next week to rule out an obstruction.
His muscle tone is poor so he receives weekly physical therapy. He is doing great with it and improves all the time!
Please continue to pray for him! It can be over whelming at times keeping all of his doctor appointments in order but when he smiles it is all worth it!
Joy is doing great and has no issues at all. She is crawling and sitting on her own. Her favorite thing to do is to crawl over to Shane and take whatever toy he is playing with. She also has taken his binkie right out of his mouth and popped it into hers! Who knew they would be fighting over toys already!
I think that is it. I tried to keep it short and simple. I hope I have succeeded in doing that. I have wanted to post an update for a long time but it was hard to know where to start.. I pray our next update has nothing but good news to report. I just want to thank everyone for their prayers and support.