Tuesday, August 10, 2021

Madeline || Update #7

(recent picture of Madeline) 

Wow, not sure how it has been so long since I have posted an update on Madeline. Thankyou to those of you who have checked in to see if we are all doing okay. Madeline is well and everything going well overall. The days just kind of blur together; in some ways they seem long and in others short, so I really didn't realize it had been so long since I posted an update. I've actually been adding pictures and text to this post for quite a while, so I have dates with the paragraphs below, and pictures are in order that they were taken. The first few are from the last few days of July, without the nasal cannula, and the rest are since then, with it.

(This was one of Madeline's first "awake and alert" kind of looks!)
(Lil miss is quite dramatic with her yawns =))
(She's got big beautiful blue eyes, just like her brothers!)

Thursday July 29th
Madeline got moved to a crib! Now we don't have to wait for the nurses to get her out for us. We can come and go as we like and get her out anytime, which we are LOVING!

Friday July 30th
Madeline is 4lb 3oz! I've been working on nursing with her with no progress, but I've still been trying. The goal is to get her used to the position/feel/suck/everything. She finally had the first few little drops of my milk into her mouth yesterday and today; the first time she was super dramatic about it and acted like she was drowning. But she also did a little lip smack so I know she wasn’t too mad about it, haha! We are quite far from nursing as she can’t get the sucking figured out; she hasn't latched yet. But she's definitely moving her mouth more which is a sign that she's getting closer to ready. A blessing in disguise is that with the nursing issues I had with both of the boys, I don't expect the process to go perfectly even with a full term baby, let alone a preemie! 

Saturday July 31st
When I came in to the NICU this morning Madeline had been put back on the nasal cannula. (Supplemental oxygen) She has been having a lot of Brady events (slowing of the heart rate) and even though this isn’t really abnormal for her age, still she really needs to have less of those, and so they made the decision for her to go back on the nasal cannula. It makes me sad to have more tubes going again but I am also thankful that she is responding well to the oxygen. She is also getting doses of caffeine to hopefully help.

Sunday August 1st
Her oxygen was bumped up to 100% this morning since her Brady events were still not slowing. She has now only had four Brady's since that was done. (whereas before that she had had around 20 in 24 hours) Even though it's not fun to have her on the nasal cannula again and getting so much oxygen, this is super encouraging that the events are slowing down. She also had labs done again this morning and everything came back clear which was good. Tonight she had her first real bath (she'd had sponge baths before) and she loved it!

Monday August 2nd
Madeline gave her first itty bitty suck today! She didn't extract anything, and it was just a tiny little few sucks, but for a NICU baby and how long/tedious the nursing learning process is, this was a huge step and I am so happy! John and I have been working with her on her paci to get her used to sucking on that and moving her mouth. She has definitely shown more mouth movement and just overall alertness the past few days so that is great progress. She continues to grow---4lb 9oz today!

Thursday August 5th
After much much trying (me trying!) Madeline truly kind of nursed a little bit twice today! She had multiple swallows and many sucks and I cannot believe how strong she is for such a bitty thing! The lactation consultant was very helpful and I really liked her. I overheard her giving the report to the nurse and she was really impressed with Madeline's progress too. It was so incredible to see things start clicking for Maddy-she was even initiating at one point-sticking out her tongue and giving little lunges trying to suck. It was pretty cute. =) 

Sunday August 8th
Madeline had her first true feeding aside from her tube tonight. John gave her a bottle and she worked so hard on it. She was totally wiped out afterwards but she managed to drink 11ml on her own! Up until this point she has had basically everything through her feeding tube. 
They had taken her off oxygen yesterday, but put her back on after she had a cluster of spells this morning. 

Tuesday August 10th (current)
Today Madeline is 5lb 2oz! So thankful that she is gaining good weight! What a praise. She struggled with the bottle today and wasn't that into it. She is still getting feedings through her tube, but we are working on her learning to suck/drink herself, at the beginning of her feeding times, before the nurse hooks up her feeding tube. 
                                                                     Snuggles with my baby girl.
She is starting to get a tiny double chin and it is the cutest thing!
She loves to have her hands up by her face.
First bottle!
All wrapped up and sleeping soundly.
First bath!
Stretching!
There have been some rough things this past week, in spite of the progress. This NICU life isn't easy, no matter how you slice it. We are making it through but the ups and downs are a real thing.

Recently, I was driving back to the apartment after an appointment in Leavenworth. I was listening to "The Lord is My Salvation" by the Gettys, and I cried as this song just ministered to my heart. 

The grace of God has reached for me
And pulled me from the raging sea
And I am safe on this solid ground
The Lord is my salvation
I will not fear when darkness falls
His strength will help me scale these walls
I'll see the dawn of the rising sun

The Lord is my salvation
My hope is hidden in the Lord
He flow'rs each promise of His Word
When winter fades I know spring will come
The Lord is my salvation
In times of waiting, times of need
When I know loss, when I am weak
I know His grace will renew these days
The Lord is my salvation
And when I reach my final day
He will not leave me in the grave
But I will rise, He will call me home
The Lord is my salvation
Who is like the Lord our God?
Strong to save, faithful in love
My debt is paid and the vict'ry won
The Lord is my salvation
The italicized lines just spoke so directly to me and what we were going through. The promises of God's Word. Spring will come. Times of waiting and times of need. His grace will renew these days. He is strong to save and FAITHFUL in love. Amen and amen!
Please pray for us that we would stay focused on Him, that our faith would stay strong, and that Madeline would continue to improve. We would also appreciate prayers for good health for all of us during this time of less sleep and extra stress. 

Thank-you for your prayers, comments, and encouragement!
-Chels

17 comments:

  1. Yes, I will be praying, Chelsy! His grace WILL renew these days. Thanks for sharing those lyrics!

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  2. I was awake and with my little one so I thought I would check in. How wonderful to have an update!
    Praying for wisdom, peace, and unexplainable joy for each of you through this challenging season.

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  3. Thank you for the update, Chelsy. Reading along and praying with you!

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  4. I've still been praying and will continue. Thanks for the update!

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  5. Hang in there! NICU life is hard. (as you know) you're doing great.

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  6. Praying for you and you family!! A few months ago my husband was hurt at work and was in the hospital for a week. It was really hard. I remember feeling peace and the Lord's presence with us through it all but I did have an emotional break down because, I am human. I think it's ok to cry, to admit that it's very hard, to ask for help, and comfort ourselves in the precious Word! May the Lord give you strength, and fresh energy as you go through this season of life.
    A few days ago in my devotions I came across a part of a verse that encouraged me, But David strengthened himself in the Lord his God. (1 Samuel 30:6b)
    Also the song 'He Leadeth Me' was my prayer as I drove back and forth to the hospital, saw my husband taken away for emergency surgery, and took care of our 3 children.
    I know you have amazing family that is encouraging you and helping you.
    Thank you for the updates! I think of your family very often even though we are complete strangers. I've been following you for many years and you are only a year or two older than me, our kids are about the same age so you feel very close to me. ❤️

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    1. That sounds like a very scary time for you all!
      Thankyou for sharing that verse and song!❤️

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  7. Thank You Chelsy for the update on Madeline Sue. We are so happy that she is doing goof. She mow weighs more than Marilyn did when she was born (4lbs.8oz.) Prayers that Madeline Sue will be able to go home soon.
    Joan,Marilyn and Marion

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  8. Thank you Chelsy, for the beautiful update on Madeline! When will you be posting her birth story?

    Hava Rynea

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    1. Hopefully before long! I’m almost finished with it!

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    2. So excited to hear it! Can't wait! Can you give a link to the first blog post you did On your blog? I am trying to find it, but I can't find it.

      Hava Rynea

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  9. She is so beautiful. Are you pronouncing her name mad-a-LINE or mad-a-lin? I've heard it both ways.

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  10. Aww, this is the sweetest thing 😭💞💞 Y'all have been on my heart heavy this past week, so thankful to hear about the steps Madeline is taking. Such a strong little girlie 😍 Looking forward to reading her birth story ❤🥰

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  11. Any updates on Madeline? And I'd love to read your birth story as well!

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  12. She's such a cutie! Prayers for all of you. ❤️

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  13. Still praying, my friend! She is precious.

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