Annelise Faith
Thursday, October 31, 2019
Tuesday, October 29, 2019
10/28 - 20 weeks, happy Monday!
My heart is so grateful for 20 weeks strong with miss Annelise Faith! As you can see... the hand in the mouth is the big activity this week😊
Thursday, October 24, 2019
10/24 - Home life
Life at home is spent trying to make a normal routine, and finding a spot for all of our new medical accessories in the small house with even smaller closets. Part of the routine includes cuddling our sweet baby! She loves to be held. We're told she is hard of hearing, has problems with her vision, and because of her trach, her taste and smell are lessened (like plugging your nose when you eat).... so her one super sense is her sense of touch. We are more than happy to cuddle her at every opportunity, and our night nurse is happy to hold her when she wakes up in the middle of the night with no intention of returning to sleep👀
Here are some updates:
Health: Annelise is doing well! Her puking stopped when we switched from the formula to fortified breast milk! Hallelujah!!
She may be developing allergies. There's more boogers and snot to help her get rid of this past week. I was concerned that she might be getting sick, but it hasn't gotten any worse... Kevin has allergies, and although I escaped much of it, there are lots of allergies in my family... So it makes sense for Annelise to have them too. I'm hoping it's not the cat🙀
She has a follow up appointment every day with a different specialist during the first week of November. Praying for great communication with her specialists on those appointment days.
Home:
We have a home nurse for overnights, Monday- Friday that we like. We'd like a morning weekday nurse too, to help me get to appointments, since I can't drive alone with Annelise, but so far, nobody has been found. Truth is, I don't really want to have another person in our home for 8 hours during the day. It has really been so hard for me to share this small space and the care of my most precious baby girl with a stranger. I have to remember that my most favorite NICU nurses were once strangers too.... I need to give them time to show us that they are capable and caring. The possibility of them not being capable is also possible though... and that unknown is causing anxiety for me.
Our day:
Consists of medication, food, naps, cleaning, organizing, phone calls to set up our new life, googling info, diapers and more diapers!
She sure is cute and sweet though, we love her so much, being here with her and overwhelmed with the tasks is real, but easily balanced by the boatload of joy that she brings to our lives❤️
Here are some updates:
Health: Annelise is doing well! Her puking stopped when we switched from the formula to fortified breast milk! Hallelujah!!
She may be developing allergies. There's more boogers and snot to help her get rid of this past week. I was concerned that she might be getting sick, but it hasn't gotten any worse... Kevin has allergies, and although I escaped much of it, there are lots of allergies in my family... So it makes sense for Annelise to have them too. I'm hoping it's not the cat🙀
She has a follow up appointment every day with a different specialist during the first week of November. Praying for great communication with her specialists on those appointment days.
Home:
We have a home nurse for overnights, Monday- Friday that we like. We'd like a morning weekday nurse too, to help me get to appointments, since I can't drive alone with Annelise, but so far, nobody has been found. Truth is, I don't really want to have another person in our home for 8 hours during the day. It has really been so hard for me to share this small space and the care of my most precious baby girl with a stranger. I have to remember that my most favorite NICU nurses were once strangers too.... I need to give them time to show us that they are capable and caring. The possibility of them not being capable is also possible though... and that unknown is causing anxiety for me.
Our day:
Consists of medication, food, naps, cleaning, organizing, phone calls to set up our new life, googling info, diapers and more diapers!
She sure is cute and sweet though, we love her so much, being here with her and overwhelmed with the tasks is real, but easily balanced by the boatload of joy that she brings to our lives❤️
Sunday, October 20, 2019
10/20/19 - Sunday at home
We are loving having Annelise at home. ❤️
We could use prayer for wisdom about home nursing. Also for wisdom regarding her plan of care for breathing goals. I wish this part could feel resolved quickly... but I also need to relax and embrace the journey, and the little challenges and victories that fill each day. 😍
We could use prayer for wisdom about home nursing. Also for wisdom regarding her plan of care for breathing goals. I wish this part could feel resolved quickly... but I also need to relax and embrace the journey, and the little challenges and victories that fill each day. 😍
Friday, October 18, 2019
10/17 - officially done with chylo
Who has two chins and is excited that her chest x-ray came back with NO sign of fluid around her lungs, meaning no more chylothorax?! This girl right here, that's who! Yippeeeee!! ❤️😍❤️ Thank you Lord for the end of that battle.
This is How I Fight my Battles song
This is How I Fight my Battles song
Wednesday, October 16, 2019
10/15 - Tuesday at home
Annelise had her chest xray on Monday. Life outpatient isn't nearly as convenient for test results, but I suppose waiting longer is a small price to pay for being able to live at home! No news is good news tomorrow, since the doctor will be out of the office, he will only ask his fellow docs to call me if there is a problem with the xray results. Annelise seems to be breathing easy, I don't anticipate that the chlothorax is still hanging around... but it will be really nice to get some confirmation that we are done with it!
It has been more challenging than I thought it would be to get used to nurses in our home. I know, weird thing for me to have a problem with right? For 8 years I was the helper entering into people's homes to work with their kids. I knew it was a vulnerable thing to have someone else caring for your baby, no matter how old that baby is... but I didn't think it would hit my introvert button this badly! It's probably another one of those things that I'll get more used to with time.
We are scheduling follow up appointments with all of her specialists. She's not as portable as a typical baby. We always have to have a person sitting in the seat next to her in the car. Without a nurse in the day, that is challenging. Our night nurse has volunteered to change her schedule a bit to accommodate some of our daytime doctor appts. I really appreciate her❤️
We are just hanging around the house when we aren't at appointments, getting used to having Kevin gone at work again, boo....but also really great that he has the job that he does! We are also getting used to her medicine schedule, caring for her breathing and feeding needs, and of course trying to find cuddling time. I get the thought in my head every day that I am not enough for the circumstances that God has given us. But every day I'm reminded that we are part of a loving church community, and have extended friends and family that are supporting us and Annelise, and that I have seen God move in this little girl's life, we aren't alone in this by any means. In the daily challenges. I heard this song on the radio when I was driving to get my flu shot this weekend. I love knowing that Annelise's story is the story of how God is working in her life, and also how the Lord is pursuing me through her life as well.
https://youtu.be/in1uxSpvsw0
It has been more challenging than I thought it would be to get used to nurses in our home. I know, weird thing for me to have a problem with right? For 8 years I was the helper entering into people's homes to work with their kids. I knew it was a vulnerable thing to have someone else caring for your baby, no matter how old that baby is... but I didn't think it would hit my introvert button this badly! It's probably another one of those things that I'll get more used to with time.
We are scheduling follow up appointments with all of her specialists. She's not as portable as a typical baby. We always have to have a person sitting in the seat next to her in the car. Without a nurse in the day, that is challenging. Our night nurse has volunteered to change her schedule a bit to accommodate some of our daytime doctor appts. I really appreciate her❤️
We are just hanging around the house when we aren't at appointments, getting used to having Kevin gone at work again, boo....but also really great that he has the job that he does! We are also getting used to her medicine schedule, caring for her breathing and feeding needs, and of course trying to find cuddling time. I get the thought in my head every day that I am not enough for the circumstances that God has given us. But every day I'm reminded that we are part of a loving church community, and have extended friends and family that are supporting us and Annelise, and that I have seen God move in this little girl's life, we aren't alone in this by any means. In the daily challenges. I heard this song on the radio when I was driving to get my flu shot this weekend. I love knowing that Annelise's story is the story of how God is working in her life, and also how the Lord is pursuing me through her life as well.
https://youtu.be/in1uxSpvsw0
Thursday, October 10, 2019
10/10/19
Some months ago, while I was still pregnant, when I had all the time in the world.... I was available to tag along with my friend and her twin baby girls to a regular check-up with their pediatrician. I asked that doctor at the time what his experience was with babies with trisomy 18... He talked about not having a baby with trisomy 18 in his care, and some of the expected outcomes for her after being born, and then left the room. He came back in to make sure that I did know though that if things worked out, that he and his office would be happy to take care of my baby.
While in Omaha, our case manager needed us to choose a pediatrician so that she could send over info about Annelise. I contacted a friend in Long Beach who has a baby girl with Trisomy 13, to find out who she sees, and was happy to choose her recommendation as our pediatrician. Today, we had our first appointment, and as GPS is leading me to our destination, we parked at the same office as my friend's pediatrician... then got closer and up the elevator to the same doctors office as my friend!.... Then down the hall and into the room right next to the one I had been in with the girls so many months ago... and as you may have guessed, the same pediatrician walks in our room to take a look at his newest patient, Annelise! He remembered our first meeting in detail, and I couldn't be happier to have him on our team. Such a special connection, reminding me that God has gone before us in this journey, and knew about this moment way back then, when we still had no idea what the outcome of our pregnancy would be. If you know me, you know that this kind of connectedness is so meaningful. And God does know me❤️
An update on our nursing situation:
The night nurse that came to us so easily didn't work out for our family. As of this afternoon, we heard that we have a new nurse available to start in the day next Tuesday, just for Tuesdays. Then we got another call that they found a night nurse for us for Mon-Fridays, starting tonight! Praying that this will be a person whom we can trust our most precious girl with.
4 months old! We ended the 6 weeks of formula today and started again with breast milk! One positive outcome of the intensity of this journey is that we are more quickly reliant on God's timing, because we have had so many learning opportunities to see Him show up outside my expectations, and then blow my expectations away. I still have my own agenda... I'd like this night nurse to be an overachieving phenom LVN, and if it were up to me I'd add to the list no trace of chylothorax causing any fluid to build up again around Annelise's lungs due to starting on full fat milk again. Since that's out of my control, and fully within God's control, I'm confident that His way is the best way for us. The best case scenario is that no extra fluid will show up as a result of resuming regular feeding. Worst case is that she will get another pleural effusion, have to stop eating for a week... Which would probably mean getting admitted to the hospital again.
Clearly you can guess which way we are praying for!
Kevin and I are so lucky to have had so many of our friends jump on a meal train and so generously bless us with healthy meals and snacks and special delivery groceries to the door. It has made our lives so much better to not have to think about our food! We are so grateful. ❤️❤️❤️
I'lleave you with some photos from today!
While in Omaha, our case manager needed us to choose a pediatrician so that she could send over info about Annelise. I contacted a friend in Long Beach who has a baby girl with Trisomy 13, to find out who she sees, and was happy to choose her recommendation as our pediatrician. Today, we had our first appointment, and as GPS is leading me to our destination, we parked at the same office as my friend's pediatrician... then got closer and up the elevator to the same doctors office as my friend!.... Then down the hall and into the room right next to the one I had been in with the girls so many months ago... and as you may have guessed, the same pediatrician walks in our room to take a look at his newest patient, Annelise! He remembered our first meeting in detail, and I couldn't be happier to have him on our team. Such a special connection, reminding me that God has gone before us in this journey, and knew about this moment way back then, when we still had no idea what the outcome of our pregnancy would be. If you know me, you know that this kind of connectedness is so meaningful. And God does know me❤️
An update on our nursing situation:
The night nurse that came to us so easily didn't work out for our family. As of this afternoon, we heard that we have a new nurse available to start in the day next Tuesday, just for Tuesdays. Then we got another call that they found a night nurse for us for Mon-Fridays, starting tonight! Praying that this will be a person whom we can trust our most precious girl with.
4 months old! We ended the 6 weeks of formula today and started again with breast milk! One positive outcome of the intensity of this journey is that we are more quickly reliant on God's timing, because we have had so many learning opportunities to see Him show up outside my expectations, and then blow my expectations away. I still have my own agenda... I'd like this night nurse to be an overachieving phenom LVN, and if it were up to me I'd add to the list no trace of chylothorax causing any fluid to build up again around Annelise's lungs due to starting on full fat milk again. Since that's out of my control, and fully within God's control, I'm confident that His way is the best way for us. The best case scenario is that no extra fluid will show up as a result of resuming regular feeding. Worst case is that she will get another pleural effusion, have to stop eating for a week... Which would probably mean getting admitted to the hospital again.
Clearly you can guess which way we are praying for!
Kevin and I are so lucky to have had so many of our friends jump on a meal train and so generously bless us with healthy meals and snacks and special delivery groceries to the door. It has made our lives so much better to not have to think about our food! We are so grateful. ❤️❤️❤️
I'lleave you with some photos from today!
Sometime in the middle of the night....
We have a pediatrician appointment in less than 8 hours, but Annelise is up with eyes wide open. She must just be excited for her 4 month birthday 😍. I'm not sure I'll have time to craft anything to commemorate the day. Today is our last day with an amazing but temporary day nurse. We'll be on our own Friday!
If you would, please pray that our temp nurse decides she wants a regular gig with us! We are trusting God's timing, but also want to make our requests known that we'd like some great nurses asap!
We are also praying for wisdom regarding her breathing needs.
I am confident that this season of transition will lead to schedules, routines, and eventual sleep... Can't wait!
If you would, please pray that our temp nurse decides she wants a regular gig with us! We are trusting God's timing, but also want to make our requests known that we'd like some great nurses asap!
We are also praying for wisdom regarding her breathing needs.
I am confident that this season of transition will lead to schedules, routines, and eventual sleep... Can't wait!
Monday, October 7, 2019
10/7 Thankful
Overwhelmed with love for my family, and so grateful to my God for this season where I am nowhere near in control. I'm not even sure if I'm getting better at taking it one day at a time, but I hold on to the promise that there will be new mercies for me tomorrow, every day.😍
Friday, October 4, 2019
10/4 - Home day 1
Transition can be so hard! I'm new mom tired and medical mom tired. What. I'm a mom? That's pretty awesome! It has been quite a year! I don't have much time to post, but wanted you to see miss Annelise on her first day at home.
Grandma and Grandpa, Kevin's mom and dad, came over to try and help me relax and nap after a long night of waking up to every little sound. Didn't quite work out, but hoping to find some sleep tonight!
Grandma and Grandpa, Kevin's mom and dad, came over to try and help me relax and nap after a long night of waking up to every little sound. Didn't quite work out, but hoping to find some sleep tonight!
Thursday, October 3, 2019
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