I was just staring at the picture at the top of our blog. that lion was bigger than he was! He is such a courageous little fighter! He has grown so much - 1 pound 3 ounces to under 1 pound to almost 5 pounds! I really can't believe it sometimes. other times I really do believe that God is doing this. that bipolar thing again. I read a book one time or heard someone say that they wanted to get to the end of their life and turn around and not be able to see how they got there; not be able to understand it. that statement was a big turning point for me. It was part of me realizing that I did not want to have some master plan and follow it to a "t" and then get to the end of my AMAZING life and be able to explain to someone exactly how I did it. I would rather live thy mysterious but perfect life God planned for me.
I do still want this and believe this but, I don't know, sometimes it is not so romantic an idea in real life.
so john is out of town. he is gone for til friday at 9 am then leaves again at noon then back on sunday to leave on monday. I am glad for him to be back at work. going, pursuing, writing, working, talking, praying - these are what make him tick. sitting ... not so much. mr. mom - not too often. his writing is going well. I miss him though - not just his help. It is hard to juggle with out him here - he does SO much. I also just miss him. the one person at the end of a day that I can talk to - not guarded - not trying to be positive so people will keep praying - not trying to be this or that to someone - just be me. He is perfect at that - letting me be me. hurt, sad, lonely, tired, mad, or happy with out guilt. I miss him. so do the boys.
kyle is doing good! he had an eye exam today and Dr. Hittner had to leave quickly afterwards so i did not see her report but she said ... and I quote... "perfect, they are absolutely perfect!" I was so happy to hear that! his eyes are great - i'll know more details tomorrow when I see the report. He did have a yucky diaper today - I don't mean like gross diaper - I mean concerning. They are going to watch it till tomorrow and see what he does. He was pretty fussy yesterday - we are praying for him to stay infection free. the is a big deal. sometimes I feel like people think b/c he is alive and b/c I am not blogging horrible things all the time that we are home free. My glass half full self would like to portray it that way - but kyle NEEDS to stay infection free. They cut his bottles back a bit. He may be getting tired or may just not be catching on to how to suck, swallow and breathe all at the same time yet. It is a back and forth thing.
The docs have decided to do the hernia surgery and circumcision before we leave to go home. Some docs wanted him to come home and get bigger - but we decided that we would let him get as big as we can and just before he is ready to come home we will do it at MH Children's b/c then his team of docs are the ones that will work him off the vent if need be and get him back to feeds. They know him and care about him. This is really scary to me - Kyle is labeled with RDS and BPD - respiratory distress syndrome, and bronchial pulmonary dysplasia. He was also on a vent for 8 weeks. I just don't want to see him go through that again. I told the NNP yesterday - now this is a routine surgery right?" I was informed that NO surgery in the NICU is routine and does have risks but they will do a great job. part of me wants to freak out but part of me wants to say "that is just the way you have to be as a doc." So - My hope is that he will come back from surgery to level 2 and off the vent!
Kyle also has a clot (or scar tissue) in his heart. He gets a lovenox (sp?) shot every night to keep this from growing. His NNP is not sure if we can do surgery on this. so not sure how these two will work together.
The biggest thing coming up is our MRI. this is friday at 3 pm. the closer we get the more stressed I feel. Sometimes I feel so convinced that it is going to be perfect b/c God is healing him. but I remember feeling that way when we found out about his bleed. I was so taken back. Physically terrified. I just don't want to be there again. I know God can heal him - I know that in scripture it was faith that made some people well. but I have watched my faith and begging not turn the answer I wanted so many times in the last 3 1/2 months. this gets confusing. My faith or might I say belief in who God is, who the bible says he is has not changed. I am just (I've said this before) learning about who the scriptures say he is vs who my American generation has told me he is. so please pray and ask God to fulfill the promises that many believe he has made to you. so many have confidently told me that Kyle is going to be fine - good - even a king. a great man of God. I believe that - I just want the fear to stop here. I really want a good report. The neonatologist that is doing this research study that kyle is a part of will be in the room and they will let me in the room too. I am of course going to ask 100 questions - I'm hoping for some answers. big deep breath!
Kyle had a good night last night – he had his primary night nurse, which is great! We really like her! I have not even gotten to know her but she came highly recommended by our fav level 3 nurses – so she must be good and I think kyle likes her. And today we have our daytime primary! I really like her too – I have gotten to know her – she is very detailed, very thorough, and even sweet and talkative to kyle! We have had another nurse that is now our daytime primary but I really like her – can’t sign her up b/c she has a student with her sometimes but she is good too! So the nurse thing is getting better!
Please pray for Coy, kyle’s best buddy. He is doing good on CPAP, and got his PICC line out yesterday. Pray he stays infection free. He had some desats yesterday that were concerning to his mom. I am learning that we are a pretty good judge of these things. He was not acting like himself and he has been off antibiotics for 2 days. HE NEEDS TO STAY INFECTION FREE! Ask the Lord to boost his immune system. Also Coy had an eye report that was concerning. Please ask the Lord to heal him. These little guys have so much to deal with – would you ask the Lord to restore his sight to perfection! These are brave prayers to pray and it is confusing to pray and pray and not feel like you have an understanding of it anymore – but God is God and God is Good and He is faithful to his character always.