My big prayer for tonight and into tomorrow is that, no matter what, Avelyn will be an Overcomer and God will continue to hold her in His arms.
Thank you for your continued prayers and support through all this! Love and hugs...
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1:05am Getting ready to pray earlier and God told me to turn on the radio. I checked the two Christian stations I like to listen to and KLove was playing 'You're an Overcomer' by Mandisa. This whole time I have just known that Ave is an overcomer and will come through this.--But it helped to hear those words; I think I have another song to sing to her. :) The part I loved the most was 'cause God is holding you right now'. He is holding her and I rely on this to get me through when I can't be there with her and when I can't hold her.--Who better to hold her than our Lord Jesus Christ?!?! Thank you Lord for allowing me to hear these words tonight!!
My big prayer for tonight and into tomorrow is that, no matter what, Avelyn will be an Overcomer and God will continue to hold her in His arms. Thank you for your continued prayers and support through all this! Love and hugs... 11:16pm Tonight got to go to Brooklan's softball game and tomorrow will get to go to Aili's. So thankful for this and it was so nice to get out and see a few people, those who have been supporting us in our little community. However when we got home it just really hit me. I want our baby girl to be with us at the games, too!! :( It's so hard trying to find a balance between being there for Avelyn and being there for her big sisters, too. Right now I am trying to spend the day with Avelyn while the girls are in school, then get home in the evening to be with Brooklan and Aili too. I miss my early morning and late night times with Ave, like we were able to have more easily while in the hospital.--It was just so much quieter and I had more time with just our baby girl, less meetings and distractions surrounding us. Praying God helps me find that balance. Wishing we could be in two places at once...
4:54pm Today's update from rounds: blood gases still look good so they will keep trying to lower the vent settings, they put in another venous line for meds etc if needed, they did another abdominal ultrasound to check her kidneys...if this turns out ok they will start giving her breastmilk through her picc line!! :) , they gave her albumin today to help draw fluid into the cells and they are chasing it with lasix to try to get rid of more fluid--she continues to look better with less fluid but still has lots to get rid of--please pray this helps!!, right upper lobe of lung looks better but still has some fluid in the lung--they need to keep her on the oscillator vent to help keep the lungs open, the echocardiogram looks better--blood seems to be flowing better through the heart but heart muscle is still thickened, they did put the bilirubin lamp back on but only bc they want it to help 'sweat off' some of her fluids. Please keep praying!! She continues to make slow gains so we are happy for that!! Thank u!!!
5:41am Talked to the nurse a little bit ago. Sounds like Avelyn had a good night! O2 and CO2 are where they need to be, pH is less acidic, ventilator settings are improving, lasix is helping with urine output, had one poopy diaper, bilirubin did go up but nurse said this is typical after removing the lamp -hopefully they will still keep it off (will decide in the morning), weight went up 1 oz but last time with lasix it seems it took a good day before she actually lost weight/fluid, and electrolytes looked good. Thank you God for a good night!!!
And my favorite of the night, Ave's nurse Kristyn whom we asked to be one of Avelyn's regular nurses when she works, asked what theme we have for Ave's nursery. I told her we are throwing a little splash of yellow into the theme because of the fun decor our life group had for our surprise shower a couple weeks ago.--I told her the theme of it was 'You are my Sunshine' and she said, "oh my gosh, I have been singing that to her!" (And I have sung it to her, as well.) So thankful and blessed by this!! So nice to have our baby girl in such good hands. Kristyn is a great nurse, seems like a great person, and is also a Christian. So thankful she can be there and take care of Avelyn when we can't. Also thought it was fun that she shared that Avelyn was opening her eyes more tonight and she is getting a little more fiesty and active (which Josh & I noticed yesterday too). :) She actually pulled off one of her wires tonight, I guess.--Love that fight in little Ave; as her personality continues to emerge, we will see if we are going to have another spirit filled, love for life, full of energy & pep Aili type personality in our household!! ;) 3:51pm This morning we were able to be here for Avelyn's teams rounds. This is always so interesting and informative. And they are always so good at answering all of our questions. Today's team consisted of the neonatologist, nurse practitioner, nurse, social worker for a while, and cardiologist for a while. So here are some of the things they discussed.
-for now we get to get rid of the bilirubin lamp...along with the shades!! :) So thankful and hopefully this continues. They will see how she responds. Her bilirubin decreased today, which was good and she has had more poopy diapers. Yay God for poopy diapers! I actually got to change one of them. So exciting!!! Ha!! ;) -She is still peeing ok, but not great so they gave her another dose of Lasix. Hopefully this will help her continue to get rid of more of her swelling!! Again, can't wait to see her appearance when she loses more of that fluid!! Doctor wants her to continue to lose weight -a couple BIG prayer requests...they talked today about her getting off the oscillator ventilator. This would be big for multiple reasons, one being that we would get to hold her when they put her on the other vent. Can. Not. Wait for that moment!!! They decided against it today bc her #'s aren't quite ready for it yet. Please pray that her blood gas #'s improve. O2 needs to stay up, CO2 needs to come down (it was too high today), and pH needs to become less acidic. One reason they discussed switching vents is bc she is trying to take breaths on her own, which generally is good until the breaths are too deep, which fights the ventilator. As they discussed today, it's all a balance. -they are doing an echocardiogram as we speak. Praying the results of this are good. If the valve in her heart is closed, we pray her heart function is handling this okay. Big prayer that her heart function continues to do well!!! -Avelyn is a little more agitated today at times. They have had to give her more doses of morphine, which we hate her having to have, but we also want her to be comfortable -also please keep praying the fluid in her lungs goes away. It's looking better. The main area they are focused on now is her right upper lobe. Needing the fluid here to go away...and for the rest of her lungs to continue to look better. Thankful for getting to be at the hospital today. Our little girl is a fighter and I love being with her. On our way home now to be with her big sisters. Thank u Mom for taking care of them! :) Praying God continues to be with all of us. Thank u all so much for your prayers!! Entry by Josh:
7:59am Last night Michele called the nurse as she was pumping...on a side note, How awesome are moms!?!?!?! 5:30am I am sleeping and she is pumping and talking to the nurse - Michele, you are super momma!! Ok, so back to the update...there is a lot of info below for things they are currently monitoring: - Platelets are good - Electrolytes are all in a normal range - Creatin is up and BUN is down. Both of these are kidney related - Bilirubin is DOWN and it had been going up so this is a huge positive! - Oxygen level on the ventilator is down - between 35 and 40. This is GREAT!! If it continues to go down and stay down she can hopefully get off of the ventilator she is on and move to a different ventilator. I can't stress how awesome this is because aside from her breathing being much better, it means Michele and I can begin to possibly hold Avelyn...haven't been able to do that yet. - Blood Gas (measures the oxygen, CO2 and PH levels in her blood) are good - 3 poopy diapers!!! When you are in these types of situations, you pray for lots of poop and pee...I know this sounds strange but PRAY FOR MORE OF THIS! The pooping helps to reduce the blilrubin levels - She appears to have lost some of the edema, and she lost an ounce of weight at the last check. - New chest x-ray looks better in the lungs...less fluid. That's all for now. Thanks again all for the positive thoughts, support, prayers and love. Entry by Josh:
7:49am So we've had a lot of people (with good reason) ask about how to pronounce her name. So here goes an attempt to explain... At the beginning it sounds like the word Avenue. Just drop the nue and add Lyn. Avv'-Uh-Lyn. Hope that helps! And she will probably be frustrated with us some day about how we picked a name that everyone has to ask about or mis-pronounces...our jobs as Parents have already started!! Love your kiddos to death and inadvertantly frustrate the heck out of them =) Entry by Josh:
7:43am I just wanted to start the day by thanking God again for Avelyn. Her life is precious, and a true miracle...as a matter of fact, if you are breathing and reading this you are a miracle too. =) Thanks so much God for the opportunity you have given us to raise Avelyn! 5:08pm Good day. Praise God!! Blood gases (O2 levels) still look good, so they will only check these 2 x per day now, which means less blood loss for Ave which is good. Praise! Also they are decreasing her % of O2 she is needing, so that is good. Is down to 45%. Hoping this continues so we can get rid of this ventilator and we can hold our baby girl.
Still has the lamp on, but she did have 2 poopy diapers today, which will help break down the bilirubin. Praise! Hoping maybe in the next day or 2 we can get rid of the lamp...and the shades. :) They did need to give her platelets today by transfusion, but they say this can also help break down the bilirubin, which is good. She is still having wet diapers, which is great...and her electrolytes have still been good. Praise! Chest xray was better this morning than yesterday morning. Praise! Still needs to continue to improve, but on it's way. And she looked better today. Less swelling. Praise! So hoping this continues so she can get rid of all the pressure on her little body...and oh, she lost 13 oz the past 24 hours!! Praise! This sounds backwards from what u would want with a newborn, but we want all that edema gone!! It will be so neat to see our baby girl without all that fluid.--She will look so much different; her poor little ears have been folded over bc of the fluid on her head, so it will be great to see her without this. And I'm so curious to see what she will weigh when all that fluid is gone. We are still monitoring her kidneys and her heart, as well, but so far, so good. Thank you SO much for the prayers!! They r making a difference and helping our sweet Avelyn. May God receive all the glory!! It was a good day for our first full day not being at the hospital all day. Hope the progress continues so we can bring Ave home with us SOON!! :) Love and hugs to u all! God Bless... 11:43am Josh and my mom got up to help the girls get ready for school. So the second time I woke up this morning was to a big hug from Aili. Then a couple minutes later, Brooklan brought in a drawing she made...a picture of herself holding a sign that said 'I love you.' The little moments. :) So nice to be home...and looking forward to seeing Avelyn, too. On our way there now.
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MicheleAvelyn's Mommy - Lover of Jesus - Receiver of God's GRACE Archives
September 2017
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