Friday, June 4, 2010

Conference with Doctor...

Caleb and I spent the night up at the NICU boarding room last night and were able to have some kangaroo time with the boys and then had a meeting with their doctor this morning. They periodically schedule care conferences with parents and families to update them on where babies are at now, where they are going, etc. It was really good to hear everything, but also very overwhelming. We heard lots of information at once.

The doctor said that overall the boys are doing well. Both are up to 5 ml every 3 hours for feedings and will continue to increase in ml as the days pass. They both are tolerating their feedings well and are pooping as well as a "27 weeker" is expected to. Breathing... Luke is doing better than Max as far as their breathing goes. Luke is progressing well and is taking steps in the right direction. Max, however, is having more spells lately and is going to get his oxygen bumped up a little to see if that helps. If it doesn't he will be put back on the C-PAP and then on the ventilator if he is still having problems. I pray that doesn't happen.

Both boys have mild heart murmurs that the doctor is not too concerned about at this point. Also... their brain ultrasounds came back good and that is awesome! They will have another set of ultrasounds down the road.

Long term news... not my favorite discussion. The doctor was very good at informing us of the long term and near future hurdles we have to face. Part of me wanted to plug my ears and go "BLAH, BLAH, BLAH!!!" while he talked, but I didn't. As far as when they can come home; it is still a long haul. They have a few milestones they have to meet before saying Adios to the NICU. Most of these markers are not hit until 37-39 weeks so I don't foresee them landing in Hayward until the end of August. We also were informed of the dreaded eye exams that come right before discharge. Preemies are at the risk of blindness due to retina not attaching properly. This is found usually closer to full term. So, it is very common to be told that your babies are on their way home and then you can get a poor report from the ophthalmologist and your babies are on their way to Minneapolis for photo therapy. That could be quite the bummer.

Longer term... stuff I really didn't want to hear now... is that the boys could hit all of their developmental milestones perfectly up to the age of 4 and then be sent to school to find out they have ADD, cognitive problems, cerebral palsy, etc. I understand that these are possibilities only, things that they have a higher risk for not destined to develop... but it makes me, of course, feel deflated. It's good, it's bad, it's good, it's bad... that's the name of this preemie game. "Life is like a box of chocolates... you never know what you're gonna get!"

At this point I am trying to take things day by day and PRAISING HIM in the little things! Max is 2 lbs 1.5 oz and Luke is 1 lb 11 oz, both on the climb! And both are so darn cute and give me a reason to get up every morning!

God is our refuge and strength,
an ever present help in trouble.
Therefore we will not fear , though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake their surging.
There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.
God is within her, she will not fall;
God will help her at break of day.
Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth. Psalm 1-5, 10


Holding Luke last night... he was being so funny! Caleb and couldn't stop laughing.

He would look up at me and almost smile... he looked so sweet!

All tuckered out...

Max all comfortable.

Dad and Max

He's getting chunky... Max, not Caleb.

3 comments:

  1. Max does look like he's getting chucky! It looks like he has rolls! :) Praying for those boys!

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  2. Ash,
    It sounds like the road ahead could be tough but good thing our God is a loving God and He will see you through it. He never gives us circumstances in life that we can't handle, especially with His help. I want to encourage you to not worry about the future and live in today because worrying will not change the future for them. I've also learned to pray for the things I would like to see happen but also pray that if that wasn't God's will, that He would help me deal with the outcome. It works wonders. :)
    Love ya!

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  3. One day at a time...one moment at a time. Your boys are beautiful and this post brought tears to my eyes...precious moments and too soon they will be grown. Your wait seems like an eternity today will be gone in a blink. Keep the faith. XOXOX
    Opal Ehalt

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