Then I fell asleep with my phone in my hand again and must have deleted it!
I guess I should get more sleep!
The point of the post is that Annelise is two months old today! And we are so thankful for her, and for a good day today.
Annelise Faith
Sunday, August 11, 2019
Happy Two Month Birthday, Annelise Faith!!
I had a whole post written about her great day as a 2 month old!
Then I fell asleep with my phone in my hand again and must have deleted it!
I guess I should get more sleep!
The point of the post is that Annelise is two months old today! And we are so thankful for her, and for a good day today.
Then I fell asleep with my phone in my hand again and must have deleted it!
I guess I should get more sleep!
The point of the post is that Annelise is two months old today! And we are so thankful for her, and for a good day today.
August 9th
The Annelise update for today includes what I guess is technically called a setback, but I'm not choosing to look at it that way. She went back on the vent in cpap mode this morning (she's taking her own breaths, but there's some pressure support to push the air in...nice humidified air).
I'm completely fine with that decision, and can see that it was necessary after witnessing how she just immediately perked up, opened her eyes, and started looking around the second she got that vent hooked back up (after a morning of working really hard to breathe) . It was amazing! And showed that she's just not ready yet for all of that breathing freedom. She handled it so well for so long though, that I know it's just a matter of when, and not if... So if I say I trust God's timing...then I've got to trust God's timing! We'll get back there again!
Little miss was being mysterious today and periodically having a hard time breathing again. She kept the nurses on their toes. I can't wait for her to get weaned off of all the drugs that were for her trach placement... Since she's weaning, it seems like withdrawals is always a possible reason for the things that hurt, and that makes problem solving difficult!
Overall, she had a pretty good day. Another day with Annelise to be thankful for!
Do I dare even mention that her chest tube output has decreased? I'm not convinced it's time to party about that yet, because she has held onto the fluid and then dumped all at once more than once. I cannot help but get my hopes up though!
Onward to what's next tomorrow!
I'm completely fine with that decision, and can see that it was necessary after witnessing how she just immediately perked up, opened her eyes, and started looking around the second she got that vent hooked back up (after a morning of working really hard to breathe) . It was amazing! And showed that she's just not ready yet for all of that breathing freedom. She handled it so well for so long though, that I know it's just a matter of when, and not if... So if I say I trust God's timing...then I've got to trust God's timing! We'll get back there again!
Little miss was being mysterious today and periodically having a hard time breathing again. She kept the nurses on their toes. I can't wait for her to get weaned off of all the drugs that were for her trach placement... Since she's weaning, it seems like withdrawals is always a possible reason for the things that hurt, and that makes problem solving difficult!
Overall, she had a pretty good day. Another day with Annelise to be thankful for!
Do I dare even mention that her chest tube output has decreased? I'm not convinced it's time to party about that yet, because she has held onto the fluid and then dumped all at once more than once. I cannot help but get my hopes up though!
Onward to what's next tomorrow!
Good news for our friend, Sarah Catherine!
Want some good news to start your morning off right? Annelise's heart sister, Sarah Catherine, and her family, the first trisomy family that we met out here in Omaha...
They.
Are.
HOME!!!
We were so happy and so sad at the same time to see them go. We were lucky enough to often run into them around the hospital and the Rainbow House. They will be missed immensely.... BUT we don't want to see them here again, ever! 🥰😊😍
Here are some photos of the new NICU graduate, Sara Catherine! We thank Jesus for you everyday, precious girl!q
Thursday, August 8, 2019
Milestone on top of milestone!
I don't know how coherent I'll be at the word-putting-together thing tonight😴.... But it was another big day and I so want to share it!
Still praying for Annelise's chest tube to stop having output and for her chylothorax to be resolved so we can move on and resume feeding her breast milk again!!
Praying for her adjustment to the trach collar, and for our adjustment to learning how to care for her trach collar too!
Praying for no infections!
Puppy picture: because it's cute and I can relate right now!
Pic of Annelise on her back:
This morning I woke up to a different scenario than I went to sleep with. Baby girl had been sleeping with the humidified air blowing chilly air around her face... She held her temp through the night, but early morning she started to get cold, and her heart rate skyrocketed from near 100 to near 200 at that time too! (By the end of the day... We learned that babies as small as Annelise aren't usually getting trach collars, so there's no smaller size of non-warmed humidifier to use that might not blow all over her face... Also, she has had issues in regulating her own temperature before today, so it's not surprising that she couldn't keep herself warm when her surroundings were so cool.... Heart rate issue is probably due to the weaning of the sedative drug.... Took her completely off that one today!)😊😎😍🤩
Pic of the worn out baby sleeping with her mouth hanging open:
Annelise was crying really hard off and on this morning, really looking bothered by her situation. They were able to switch her to a heated humidifier for the trach collar, so her temp came up again, and she could stop being so bundled up in a warmed isolette... Not her favorite feeling. She let a nap take over at that point after all the commotion of the morning.
Pic and video of Annelise in her bed with blue bedding with flowers:
I had been having a really down and discouraging morning. I couldn't pinpoint any one particular thing that was upsetting to me... I think it's just all of the things that the NICU brings us, and the struggles of people I care about... plus, the answers to all of the questions I've had for months about how she's going to do as far as breathing... are in the process of being answered as she is progressing at shockingly healthy speeds! My brain is telling my body to join it in flipping out!
The staff at Children's NICU are phenomenal. Above and beyond her duties of teaching Kevin and I the really-freakin-scary-cause-it's-so-new task of caring for Annelise's trach collar daily.. Our respiratory therapist sat down and asked if I was doing OK? Because she noticed that I seemed more stressed and maybe overwhelmed today. Of course that brought the tears, and a good talk, and she gave me non trach related homework of doing something for myself... So Kevin and I went to go to Hobby Lobby, because it's that simple for me to find joy in craft supplies!
OK so that was a long back story to explain why we were gone... the point is that when we came back, we walked in to find multiple nurses and RT's in Annelise's room... and in the NICU, that usually means something very bad is happening. They were quick to tell us that everything is good, they were just trying something else out because the warm air humidifier didn't seem to be working with Annelise, and she wasn't keeping her oxygen saturation up.
You guys, the thing they tried was the next step of an HME collar, that slightly humidifies the air she breathes for her. They weren't thinking that she would be ready for that until much later... But she was loving her life with her HME! It's just a small box that connects to her trach, and means we don't even need the humidified air all day!
She's still going to get the humidified air at least at night. It will help with the junk and goobers that can collect, to keep them thin so they don't clog up her trach and cause an emergency situation where she needs to switch to a new trach so she can breathe!
She is just surprising everyone with her lung health! 😍🥰❤️
This is just day one, but what a day so far!
She is still going through some withdrawal symptoms, and is having some hard moments throughout the day, but we are so excited to see her moments of calm and breathing sweetly without anything more than the HME today!
The rest of the pictures were Kevin and my date night out to a ramen place that the RT recommended, and an ice cream place our amazing nurse suggested! Hooray for food not from the cafeteria! I know that I needed to get away while Annelise was in a good spot, and have a change of scenery with my very best most incredible husband.
What a day!
I know I've been typing for awhile, so this is probably a super log post again, but a new mom friend at the hospital here shared this song with us that is my heart right now, and I wanted to pass it on.
It's important to me to acknowledge that everything good about today came from God. Praise the Lord for Annelise's trach progress! But it's equally important for me to see how God was working in the whole day, even the yucky parts where I feel discouraged and overwhelmed. Praise you Lord for the conversations and perspectives that came from your people encouraging me today.
OK I'm going to go to sleep now so we can wake up and go hang out again with that cute baby!
Big Daddy Weave - I Know
Big Daddy Weave - I Know
Wednesday, August 7, 2019
Wednesday's Trach Milestone
Today has been a busy one as well! I'll start with the highlights of yesterday.
August 6th
Chest tube: status didn't change. Still dumping fluid from around the left lung... I searched for "chylothorax" on a fb page for parents of babies who have had heart surgery, and found multiple other babies without the extra 18th chromosome with the issue of ongoing drainage too! One string of comments mentioned a low Albumin level as the factor that they believe caused their baby's issue to clear up. I asked about Annelise's Albumin levels, and it was low, so the neonatologist in rounds thanked me for bringing that up, and now they are working to raise her Albumin levels too! That made me feel good and useful.
Tracheostomy: They began to wean down the support Annelise was getting through her trach from the ventilator in the morning... And by the evening, she was on cpap mode, taking all her own breaths!
Today:
Chest tube: No change. They will only think about starting to give her breast milk again when her drainage slows or stops. They have a plan in place now to replace the fluid that she expels at intervals throughout the day, so she won't get too far behind in her electrolyte numbers and all that good stuff.
Tracheostomy: I couldn't even update you on the cpap change before she graduated to a trach collar! You guys, this is so huge... I don't even think my emotions will let me feel the enormity of this milestone at the moment... the anxiety tells me to hold my breath and wait for it to fail.... But she just keeps on rocking it! Hanging out and breathing air that has been humidified for her, and keeping her oxygen sats up with no issues, except for when she gets mad and cries... But they say we all desat a little when we do that.
The team seems to have played with her body chemistry and won the prize of a balanced baby for the most part. They also began weaning a different drug, the sedative, and she's handling that one like a champ.
So to summarize, our baby has a whole different lifestyle today than she had yesterday, and she seems to be loving her life. It's so nice to see her more alert and awake. She has been less irritafed today than she was yesterday too.
That dumb chest tube drainage is holding up our progress in other areas, but we're so pleased that her doctors and nurses here find any way they can to keep her moving forward.
I have felt myself trying to detach from all the feelings today, even the good ones, because it seems there's just no time to process big stuff before more big stuff gets added to it... Then it just seems like all too much all I can do is go cry and take a nap. During a low point of the day, I was resting in the recliner in Annelise's room, and my phone kept buzzing and buzzing. When I checked it later, I had three texts from family members letting me know they were thinking about and praying for me/us. My aunt even mentioned that she felt a nudge from God to pray for us. These aptly timed texts remind me that God is in control of the timing. I can surrender the chest tube drainage to Him, and focus on enjoying my family and the blessings like the trach collar that are just so incredible and encouraging! It looks like I might not have to drag around a ventilator all day you guys! 😊😭😍🤩🥰😎😁
Random extra note: Each month we have to switch rooms at the Rainbow House, it's how they keep the rooms clean. So I'm excited to use up all the extra nervous energy in my body by moving our stuff to a room a few doors down the hall. The last room change was completed by Kevin and the fam that was visiting at the time (thanks Jeff, Katie, and Mara!) because I still couldn't lift heavy stuff after the c-section. It feels good to be able to move again!
August 6th
Chest tube: status didn't change. Still dumping fluid from around the left lung... I searched for "chylothorax" on a fb page for parents of babies who have had heart surgery, and found multiple other babies without the extra 18th chromosome with the issue of ongoing drainage too! One string of comments mentioned a low Albumin level as the factor that they believe caused their baby's issue to clear up. I asked about Annelise's Albumin levels, and it was low, so the neonatologist in rounds thanked me for bringing that up, and now they are working to raise her Albumin levels too! That made me feel good and useful.
Tracheostomy: They began to wean down the support Annelise was getting through her trach from the ventilator in the morning... And by the evening, she was on cpap mode, taking all her own breaths!
Today:
Chest tube: No change. They will only think about starting to give her breast milk again when her drainage slows or stops. They have a plan in place now to replace the fluid that she expels at intervals throughout the day, so she won't get too far behind in her electrolyte numbers and all that good stuff.
Tracheostomy: I couldn't even update you on the cpap change before she graduated to a trach collar! You guys, this is so huge... I don't even think my emotions will let me feel the enormity of this milestone at the moment... the anxiety tells me to hold my breath and wait for it to fail.... But she just keeps on rocking it! Hanging out and breathing air that has been humidified for her, and keeping her oxygen sats up with no issues, except for when she gets mad and cries... But they say we all desat a little when we do that.
The team seems to have played with her body chemistry and won the prize of a balanced baby for the most part. They also began weaning a different drug, the sedative, and she's handling that one like a champ.
So to summarize, our baby has a whole different lifestyle today than she had yesterday, and she seems to be loving her life. It's so nice to see her more alert and awake. She has been less irritafed today than she was yesterday too.
That dumb chest tube drainage is holding up our progress in other areas, but we're so pleased that her doctors and nurses here find any way they can to keep her moving forward.
I have felt myself trying to detach from all the feelings today, even the good ones, because it seems there's just no time to process big stuff before more big stuff gets added to it... Then it just seems like all too much all I can do is go cry and take a nap. During a low point of the day, I was resting in the recliner in Annelise's room, and my phone kept buzzing and buzzing. When I checked it later, I had three texts from family members letting me know they were thinking about and praying for me/us. My aunt even mentioned that she felt a nudge from God to pray for us. These aptly timed texts remind me that God is in control of the timing. I can surrender the chest tube drainage to Him, and focus on enjoying my family and the blessings like the trach collar that are just so incredible and encouraging! It looks like I might not have to drag around a ventilator all day you guys! 😊😭😍🤩🥰😎😁
Random extra note: Each month we have to switch rooms at the Rainbow House, it's how they keep the rooms clean. So I'm excited to use up all the extra nervous energy in my body by moving our stuff to a room a few doors down the hall. The last room change was completed by Kevin and the fam that was visiting at the time (thanks Jeff, Katie, and Mara!) because I still couldn't lift heavy stuff after the c-section. It feels good to be able to move again!
Tuesday was busy
I've been trying to start a post for awhile now! There was a lot of good in today to share... But first I took a nap, then Annelise has been fussy and agitated. I'll update in the morning! And leave you with a sneak peek video🙂
Monday, August 5, 2019
Monday, 8/5
Today was a heavy and hard day. One of our unique, priceless, amazing baby friends went home to heaven today. I didn't ask her mom if I could share her name, so I won't here, but I can't have access to so many relentless prayer warriors and not ask you to keep her mama and daddy's hearts in your prayers. The Lord knows exactly who they are and sees them.
My brain is officially overloaded. Holding space for grieving with friends as well as trying to follow along with all of the chemistry that is going on in Annelise's body.
She still has massive amounts of fluid for her little body coming out of her chest tube. They tried different things to raise the very low co2 levels yesterday and all day today... And finally after 9pm, they found something that worked well enough to make her blood gasses and pH in the "OK" category. We'll take it for now!
I can't remember if I included this in my update from yesterday, but the idea of Seizures being a reason for some of her issues was brought up. There are multiple other factors going on right now though, so a test for Seizures later, rather than now, was recommended for her, after she gets off more meds.
The Lord gave me a few sweet moments today when Annelise was wide awake but not grumpy.
Also sweet is that she is 8 weeks old now! Thank you Jesus for 8 weeks and every day that we have with her! She was fussing in the picture below but then calmed down and cheesed it up just in time for me to get a photo❤️
We're praying that God would heal up the pleural effusion that is draining her body of so much stuff and return all fluids to normal status.
Praying for our friends who are grieving the loss on earth of their precious girl.
Praying for rest from this weary road, for us and Annelise too.
My brain is officially overloaded. Holding space for grieving with friends as well as trying to follow along with all of the chemistry that is going on in Annelise's body.
She still has massive amounts of fluid for her little body coming out of her chest tube. They tried different things to raise the very low co2 levels yesterday and all day today... And finally after 9pm, they found something that worked well enough to make her blood gasses and pH in the "OK" category. We'll take it for now!
I can't remember if I included this in my update from yesterday, but the idea of Seizures being a reason for some of her issues was brought up. There are multiple other factors going on right now though, so a test for Seizures later, rather than now, was recommended for her, after she gets off more meds.
The Lord gave me a few sweet moments today when Annelise was wide awake but not grumpy.
Also sweet is that she is 8 weeks old now! Thank you Jesus for 8 weeks and every day that we have with her! She was fussing in the picture below but then calmed down and cheesed it up just in time for me to get a photo❤️
We're praying that God would heal up the pleural effusion that is draining her body of so much stuff and return all fluids to normal status.
Praying for our friends who are grieving the loss on earth of their precious girl.
Praying for rest from this weary road, for us and Annelise too.
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