Friday, May 28, 2010


(As of yesterday)
Day 70 - Samuel is ten weeks old
Weight - 3 lbs 4 oz
The last couple of days....:
Monday morning the doctors rounded and they began weening the amount of oxygen going into Samuel's nasal cannula.
It didn't work.
I knew by Monday night that Samuel needed the 100% oxygen. By Tuesday, I was stressed. Wednesday, during rounds, I tried telling the doctor that Samuel was having a lot of problems and that it began when they began turning down his oxygen. Wednesday night came around, and Samuel was dropping his heart rate every ten minutes or so. I was beside myself. What is the point of letting him struggle like that? Everyone's answer was "This is what preemies do...." "Don't look at the monitors." "Don't get upset unless the nurses are upset." Yes, I know that preemies do this - but I also know that I sit with Samuel ALL day EVERY day and I know that this isn't normal for him.
Samuel gets his blood tests on Thursday morning. When they got the results back from his test (his CO2 was 65 compared to Monday's 42) they knew that something was wrong.
Even though the most obvious course of action would be go to back up on the oxygen, Dr. Arrington wants to take a different route in order to protect Samuel's eyes. He increased Samuel's flow to 2 and put him back on Lasix every day. I know Dr. Arrington likes usuing the Lasix...and I'm sure he knows what he's doing...but it's VERY frustrating because it's like we are taking two steps back.
The increased flow means that they can't start feeding Samuel through his stomach (we can only do that when the flow is down to 1 or below.)  Because of the Lasix, he will have a harder time gaining weight, his electrolytes will be messed up, it could cause hearing damage, and it could take the calcium from his bones (causing breaks.)
Thankfully, the increase in flow did help the bradies (heart rate drops) - but he is still dropping his pulse-ox (oxygen level) because he doesn't like the higher flow. Hoping that today will be better.
10 weeks of this up and down....up and's exhausting.


  1. God is doing exceedingly abundantly above all that you can ask or think, according to the power that works in you. (Ephesians 3:20) You are experiencing the tremendous blessings of God exploding in your life! Just Hang on to this on the ruff days and know that you know He is MORE than ABLE!! Thank you Jesus for the Sar...ah, Michael, Samuel and their dedicated love and admiration for YOU!

  2. Sarah,
    Today is my last day at Glenn Duffy Elementary. I wanted to let you know that I will no longer be writing on your blog since I will not have access. However, I will continue to pray faithfully for you and Samuel. It was good to hug you the other day. I have been praying peace over you and Samuel since that day. May you experience his peace that surpasses understanding. May Samuel be surrounded by angels and feel the hand of God on his little body as he grows and heals. Blessings,
    Kristen Smith

  3. Oh, honey, I feel for you on so many levels. My daughter was born with a near-fatal heart defect, and she spent months and months in the NICU. When she was moved to a different hospital for open-heart reconstructive surgery at 2 months old, I had to cope with doctors that refused to listen. I, like you, had spent every day, all day with her - commuting 2 hours to be with her daily. I *knew* what was normal for her, but the new doctors just didn't get it. It took her almost dying and me flipping out on them and very nearly yelling in their faces before they said, in very condescending tones, "Fine. We'll try it your way." My daughter began improving steadily almost immediately. They didn't even apologize for spending the last week ignoring me.

    Babies like ours have no voice, and we have to speak for them. If we know better than the doctors, we can't just sit by and wait. We *must* speak up, speak loudly, and speak often. We must make a nuisance of ourselves until they listen. We owe it to our children.

    If you don't mind, I'm adding you and your son to the prayer list at my grandfather's church. Meanwhile, stay strong. The road feels like it will never end, but before you know it, it will.

  4. Also... discuss the possibility of a heated cannula with the doctors. My daughter didn't work well with high-flow, either, and when they tried the heated cannula with her, she responded very well.

  5. you are doing the right thing. Don't let them get away with anything. keep pushing. don't stop. get in their faces if you have to... follow them around on their rounds and repeat "there is something wrong you need to test now..." over and over and over and over again until they do. don't back off. don't feel like you have to be passive... your baby needs you to be agressive.

  6. Sarah, you don't know me or I you; I found this blog based on a search after Samuel's national television debut. He's such a cutie!

    I know it's very stressful; I'll keep Samuel, you and your family in my prayers as well as pray that the doctors and nurses have the intelligence, training and the good sense to listen to their tiny patients' advocates.

    Fight on, little Samuel!

  7. Sarah,

    I am continuing to pray for Samuel, you, Michael, and your family. I am praying that God will give you wisdom and favor regarding how to best communicate with the staff.

    I can't imagine how exhausting and frustrating this process must be for you. On the other hand, I can't imagine how amazing it must be to hold Samuel and know that God chose you to be his mother...

    I love you so much Sarah and will continue to pray for Samuel. What a testimony his life is to God's abundant love! Our God knows when a sparrow falls. He cares about Samuel's O2 levels, and he cares about your frustration. All things work together for good for those who love the Lord!