But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Thursday, September 27, 2012

Thursday, September 27

I (Gavin) tried to come up with a unique post title that we haven't used before, but decided two minutes later it wasn't worth my brain effort.  Two minutes wasted . . . .

We didn't post yesterday, so there's quite a bit to catch up on regarding the quints.  

Seth:  Let's start with the precious little guy that needs a mighty work of the Lord done on his lungs.  He's still doing quite a bit better on the nitric oxide treatment for the pulmonary hypertension.  Yesterday they did another echocardiogram that showed the the hypertension is gone, so they have started to wean the nitric oxide down, hoping to be off it early next week.  

Unfortunately, a side effect of the gas has been that his PDA (artery in his heart that should be closed) is open and large.  The good part of the PDA report is that the blood is flowing just one way and not both, which is worse.  The bad part is that the PDA is contributing again to fluid on the lungs.  He will get another echocardiogram on Monday to determine if the PDA has closed with the weaning of the nitric oxide.  If not, we're not sure what will happen.  Having a surgery like Gracie did would be the desired thing to do if his lungs were not so sick and compromised already.  They have to move the left lung out of the way when doing the ligation surgery, so Seth would likely not do well with that.  Please pray that the PDA will close and Seth will not need surgery!  

The doctor said that he has seen many babies with Seth's lung problem and, barring a very significant improvement, is expecting that he will be going home on a ventilator through a tracheostomy (ventilator tube to his trachea through the neck).  Our prayer is that God will do a mighty work in his body and heal his lungs quickly and effectively.  He is able!  He did comment on how healthy Seth is overall.  His lungs are his ONLY problem!  He is so healthy in all other aspects, unlike so many other babies with significant lung disease.  The doctor said that is really incredible that the other four are doing so well without serious problems of our own.  

An aside:  I am reminded of a comment sever that elementary school age kids aren't old enough to be a witness to God and Christ.  Aside from the proof to the contrary I've seen in Isaac's life, our little babies in the NICU who are learning how to breathe are being used as a witness to the goodness, grace and love of our great God!  We're never too young or too old.
We can't wait to finally hold little Seth!

Marcie:  Marcie has graduated to her own open air crib!  Three down, two to go!  She is still on the vapotherm machine.  She's had a little trouble with bradycardia events (heart rate dropping when she forgets to breathe), so they've put her flow back up to five liters per minute from three, but overall she continues to do well.  Grandma was holding her today and she just got so comfortable and happy she just decided it was easier not to breathe.  She'll learn.
Marcie finally wearing clothes

Grace:  Grace is doing well also.  She's gaining weight consistently and at least trying to get onto the weight charts.  She's on the CPAP machine, but are thinking that she might be able to move to the vapotherm in a week, plus or minus.  
Carrie spending time with Gracie


Will and David:  Will is now on "the blender" with David  This is the next step down from the vapotherm cannula.  So now he and David are both just getting moist air through their nasal cannula with oxygen mixed in as needed.  For the most part they have been on room air (21% oxygen) but every once in a while they need a little O2 boost.  Three days ago, we started their "nipple trials."  I had to laugh when, in all seriousness, I heard the nurses use that term.  It sounds like our babies are trying out for some kind of kiddie olympics-- "Attention, all participants in the first heat of nipple trials, please proceed to bay six of the NICU."  Sorry, I just found it amusing.  

Seriously, though, it is the first time they've been given a bottle since up till now they've only been getting fed through a tube directly into their stomach through their mouth.  They haven't really tasted the milk before Monday.  Both Will and David did great from the start, so that was encouraging.  Last night, Carrie tried breastfeeding both of them (the second try) and they did a wonderful job.  Big steps.  It's funny how we're celebrating all these little things that I have always taken for granted-- that's life in the NICU.
Carrie really wanted Will's fat legs on the record
Grandma holding Will this afternoon

Poll time:  Who does David look like?

I think that's most of the news about the small kids.  The big one?  He's doing pretty well.  We would appreciate prayer for what to do about school for him.  He is quite bored in his current class.  The work is not at all challenging and tends to be more first grade or kindergarten-ish sometimes.  His homework tonight was: 70,___,72  Fill in the missing blank.  We were a bit incredulous.  He is testing this week to get into the GATE (Gifted And Talented Edumucation) program, but are wondering about the wisdom of bumping him up to third grade, which is where he belongs age-wise.

Carrie and I are doing well, I would say.  Now that Carrie is going to the NICU twice a day, things are a bit more challenging and she is not getting the rest she needs.  We'll have to figure a better schedule out, but we know it's going to just keep changing, especially as some kids are home and some are in the hospital.  It could be as soon as 3 weeks from now when David and or Will come home, according to the doctor!  

I've been keeping myself busy in the mornings and sometimes longer at the Center here doing a variety of things: servicing and repairing lawn mowers, chainsaws, backhoes, trucks, Bobcats, building shelves, etc, etc.   I'm very happy to get my hands dirty and exercise the other parts of my brain.  

If you've read this far, I'm proud of you.  I'm done, though.  Good night!  Thanks for your love and prayers!

Gavin 




17 comments:

  1. Thanks for taking the time for the lengthy update. I got a laugh out of your kiddie olympics post. You are most certainly right about celebrating all the little milestones. It helps get you through the roller coaster.

    Next week we have to take our NICU grad to a follow up appointment at Children's. I'm looking forward to going back and being able to see my favorite doctor and some of her primary nurses.

    I'm glad you enjoyed the hats. Thanks for posting the pics of the boys wearing them. I hope the pumpkin ones will fit size wise for them next month. You continue to be in my thoughts and prayers.

    Sarah

    ReplyDelete
    Replies
    1. I am so excited about the pumpkin ones! The nurses keep saying how much they love how soft those hats are. Marcie was wearing one tonight and I got a picture I am going to post, too. :) Thanks so much for thinking of us and for putting all that work into it. It means a lot knowing you've gone through this NICU ride, too! God bless you, and thanks a million for the prayers and the verses you sent!! Love, Carrie

      Delete
  2. I'm SO GLAD to hear about all the Babies AND see their pictures,,,I Praise God for all that He has done in this short time in these Precious Babies' Lives...Father in Heaven You Have Blessed Carrie in a Very Special way to be able to hold David and Will close and to Breastfeed them...That is such a Miracle in it's self!!!!! Thank-you God For all of Marcie's improvements,,,And Lord Please Continue to help Grace gain weight and progress on .....Lord I've only Known this family since August the 14th,and I thank-you for calling me to Prayer for this Family,,,Father help Carrie get the rest she needs before the Babies come home...Please Bless the Proud Father of these Babies,and surround them all with Your Peace and Love, that only comes from you... We ask for your wisdom, Dear God for Issac,,Please give your Wisdom on what You Think Is Best for his education,,And Bless him with Good teachers, and the Challenge that he needs to learn,,Lord It's all in your hands!!!
    And Almighty Father We place Baby Seth in Your arms AND ASK YOUR HEALING FOR HIS LUNGS...Most Holy Father, We bring to you all the tears that fill the eyes of your people, you have called to pray for Seth,,,and turn them into your tears of healing for his lungs...You Have Made Seth into a fighter Lord, continue to make his life to be a Great Witness for all to Know That You are A Powerful and Mighty God......
    Know that All the Babies are in My Heart and that Seth hold a very special place in my Heart...Praying Always from Dayton Ohio "We Don't Understand BUT We Believe"

    ReplyDelete
  3. Love to read the updates...thank you for sharing your journey. So fun to see how the babies have grown and reached many milestones. Also precious to see you all loving the babies and getting to hold and cuddle them. Will continue to hold the babies up in my prayers and Seth especially at this time for his lungs. His picture is precious, such a sweet little gift. Take care and many blessings to you all.
    Shauna

    ReplyDelete
  4. Great update. My 5 were born at 30 weeks and at this point I still had 2 on the vent, my son with similar sounding issues of BPD and PIE ike Seth. They told us the same thing but praise God neither of them had to be traeched and he just came home with standby oxygen and a pulse ox for me to keep an eye on it. Keep on standing by faith, many it seems are standing with you. Wonderful that he has no other issues. My Ian was like that and once the lungs started filling in he has never had any residual effects other than requiring a little more sleep, but that might jut be him.

    ReplyDelete
  5. Grandma looks so beautiful holding babies! Praying, praying, praying ...
    (love the "through-the-incubator" shot.

    ReplyDelete
  6. Father, we thank for the progress of all these little ones, and we praise You for working through them as Your witness. Lord, we are lifting up precious Seth and asking for special healing of his lungs, and that he won't need any further treatment for the PDA. We praise you that Seth has no other major issues, and ask that You please touch his lungs with Your healing mercies and give him the strength to improve. All of these sweet babes are precious miracles and we pray that Your Will be that they would all continue to improve and come home quickly to the loving arms of their family, Lord. Thank you that Carrie and Gavin are doing well, please give them the strength and support they will need when these little ones do come home. And, Lord, help them to make good decisions regarding Isaac and his schooling, and we thank you again that he is doing well. Please be with all those involved in the quints' care, that only the right treatment and decisions will be made. We praise You and love You, Lord. Amen. NKL

    ReplyDelete
  7. A wonderful report on these gifts from God! I agree, a witness to God can be ANY age. Sometimes it's the "smallest" that teach us the most! My prayers will certainly continue for the family and a few specific prayers for Issac and Seth. Your all being lifted daily.




    ReplyDelete
  8. I read it to the end and rejoice with you at all the good news. I pray that even better news on Seth's behalf will be forthcoming in the not too distant future.

    I love the pictures and marvel at how much those precious babies have grown. They (we) are truly fearfully and wonderfully made.

    Praying with you and have a blessed day,

    Gail Boemker
    JAARS
    Waxhaw NC



    ReplyDelete
  9. Education being my passion, I'll pray especially for Isaac and your decision. I'm not a teacher, unless you count volunteering in the public schools and homeschooling our own kids for a number of years, but I say, don't let him be bored! G&T classes are better than nothing, but it depends on what they are. In our schools, it was merely a one day a week pull-out program. So one day a week the kids weren't bored -- that's still wrong. I'd go with the third grade option (and also G&T if appropriate) -- except, of course, that he just made all these new friends and would have to go through the social strife of leaving them behind and starting over in a new grade. Educational decisions are rarely clear or easy!

    ReplyDelete
  10. I say David looks like Isaac!! Bless you both for being so faithful in keeping us up to date. You are in our thoughts and prayers all the time. I never used to open my computer in the mornings at home, and now you are my first thoughts and I check for a post. I still have your prayer card as a bookmark in my Bible reading, so how could I forget you? I love you all! (THE PICTURES ARE GREAT!)

    ReplyDelete
  11. Oh how I love the long post and all the pictures! I know that it takes time away from your family to do this for us but you just have no idea how much it means to us. I love to know what to pray for for each little angel and that does include Issac. I am standing in agreement with each and every prayer that they all will go home healthy. Prayers for Seth and his lungs and just know God will be by his side through this. You and Carrie take care of each other and once again, your blog is such a blessing to us.
    Julie - Texas

    ReplyDelete
  12. Loved reading all the way to the end!! Still praying. They're adorable!!

    ReplyDelete
  13. Such a joy to see everyone and read your updates! :) As for "the big one," I would say that, unless he is miserable, perhaps it is not a terribly bad thing that the work is easier rather than harder ... he's got a lot of other stresses in his life right now to deal with. :) Love to you all!! sharon b

    ReplyDelete
  14. Thanks for taking time to post pictures. it's nice to see what the babies look like that you are praying for.and love reading each update. I pray daily. Mary Lee Starr

    ReplyDelete
  15. I feel for Isaac. It really stinks to be bored in school. Have you considered homeschooling?

    ReplyDelete

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Blog Archive