Quick!! Get a good look.....

....because we may not see this again for a while. Stella has been suffering from insomnia. Not just regular baby sleeplessness--getting up to eat in the middle of the night. I mean, up for days without much real sleep kind of insomnia. Probably from our time in the hospital. She has pretty much been up since midnight last night with only a few short naps. This is the longest she has slept since then--she's been asleep for almost 1 1/2 hours now. She fell asleep in her carseat on the ride home from nannie's today. Luckily I only had a couple of short cases today and I was able to come home and get a good nap this morning. I was loosing my mind. It would not have been a good day to have a big surgery if you were my patient. Hopefully we are really really really really close to getting back to normal. She was soooo close to sleeping all night.



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Sewing to match leg warmers!!

Stella and I went to nannie's today after her doctor's appointment. Nannie is going to be keeping Stella for a while so I wanted her to go for a little visit, and we showed Nannie her new formula. And of course we did some sewing. Specifically things to match some of her leg warmers (have I mentioned that I LOVE baby leg warmers before ;) ).
























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Stella update

We have been home from Pensacola for 2 days. Stella is doing well, but we still have a long way to go before she is well. We had a check up with Dr E today and her lungs do not sound well, but not bad. Our two main concerns at this point are nutrition and not getting a secondary bacterial infection. She is more susceptible now because her immune system is weak due to her illness. We are to stay out of public as much as possible and limit contact with people. So if you see us and we aren't friendly, we are just trying to keep Stella at a distance. We are supplementing with high calorie formula to make sure she doesn't lose any more weight--especially since her intake is only about 1/3 what she would normally eat. Her average right now is about 1 oz per feeding, and she isn't really eating more often than normal.
Overall, she is much better. She is more awake than she has been, is coughing less, and smiling and cooing. She is also starting to hold her head up again. It's obvious she feels better. Thanks to all those who have been praying for our little girl. All the calls, texts, and emails are uplifting and much appreciated.
Picture from today (in her new raggedy Ann onesie and leg warmers).


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Stella's new BFF

While we were in Pensacola my baby changed some of her habits. She was very comfortable sleeping on her tummy, and she would rarely ever take a pacifier. She wanted to satisfy her need to suck while she was in the hospital, but did not want to eat, so she satisfied that need by becoming obsessed with her pacifier. Also, she was not at all comfortable on her tummy--not sure why, but probably because her chest hurt so bad and because maybe she felt like she couldn't breath. She mostly slept in her boppy because it would lengthen her airway and made it easier for her to breath. So now she wants to sleep on her side or her back.
I had first seen wubbanubs in the nicu when I was a resident, and decided to order myself and a friend a couple of them, and I am so glad I did. They just came in the week before Stella got sick, so we had not used them much, but they have been a lifesaver.
Here is Flossie:









Pre-RSV. This is the last picture taken before getting sick.


Nannie named this wubbanub after a bottle holder that was named after a hurricane when my mom was a baby--1956.
We also now have Katrina, and if we acquire another wubbanub at some point it will be Opal.

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We are on the way home!!!

We got the once over by the attending and Stella was declared well enough to go home. I have never been so ready to get home in my entire life!!!
Here is Stella in her going home outfit. Still with her little circles and sat probe in this pic, but they are gone now!!!



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How ready are we...

I have never been so ready to get to my house, with my family, eat my food, and sleep in my bed. I think we really actually may be going home today!!
We had a rough little patch last night with a long coughing spell and she vomited a bunch one time, but a breathing treatment seemed to quiet it all down and she STAYED OFF OXYGEN!!! YAY!!! She is eating enough to make wet diapers, so that pretty much meets the requirements for going home. She's not quite eating half of what she normally would but, we can work on the eating at home.
Only one thing holding us back. (the sat monitor)




Happy girl. Happy mama.




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Waiting on rounds

Man peds residents have it easy!!!
We are waiting on the team to make rounds and discuss the plan. We are off oxygen right now (took it off about 11:00), and still without an iv. She's not eating great, but hopefully it's enough to stay off fluids. She is much more awake and alert today and has been more like herself (cries when you put her down). We are having a good day, but I'm not getting my hopes up too much. This has been a back and forth/up and down process, and every time I get my hopes up and things don't go in the right direction it wears me out.






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RSV day 8

Well, slowly but surely we are making progress. She ate well enough that we could leave her iv out overnight, but we could still end up having to put it back in if her intake doesn't progressively pick up. She did pretty good last night with the O2 at 0.25 liters, so this morning they turned it down to 0.1. That is so little oxygen you would think she could do just the same without it!!!! If she does good on that for a few hours we are going to turn it off.






If she makes it all day without an iv we are going to celebrate by going to the tub room and getting a REAL bath this evening!! We have done a couple if little sponge baths, but she needs a real bath. Babies get dirty. If you pee and poop and drool and spit up and vomit and sneeze all over yourself you kinda stink!!

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One step forward and one step back

That puts us in about the same spot I guess.
Tonight Stella took 1.5 oz all at one time. As long as she can do that or better at each feeding she can avoid another iv. Yay!!!
But after we put her down her nurse came in and looked her over. Her respiratory rate was in the low 60s and her sats were hanging out around 89%, so she turned her oxygen up to 0.5 liters. Boo!!!
We are going to ride that through the night I guess and lower it down again in the morning.
*sigh* Last week when all this started I got all my cases and patients rearranged and my schedule was clear until tomorrow afternoon. Now I have rescheduled again and it is clear until Thursday. Now I am wondering if I am going to have to reschedule Thursday. I really need to work Stella!!! How do you think I am going to buy you more leg warmers?!?! ;)


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Cautiously optimistic

I went to the mall for a little while this afternoon and when I got back I expected Stella to have her new iv. However, I found out we were gonna give her a little trial of being without it. If she can prove herself and eat some this evening, we can leave it out. I really really don't want my baby to have to be stuck again. Please stop right now and pray that God touches Stella's little stomach and makes it rumble. She has to eat. It's now or.... whenever she decides to eat. But seriously, please pray for Stella to EAT!!!



She has done really well today other than not eating. She has been much more alert and less fussy. Her O2 sats have been in the high 90s, and she her little coughing fits have been shorter and much less violent. She has not vomited at all, and has taken a little more milk this afternoon than she has for the last 2-3 days. So, we are definitely seeing progress.

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Bad day/I'm listening God. I hear you loud and clear.

This is what I feel like doing too.


Well I started a post this morning about getting off oxygen and possibly stopping the fluids, but now we are back on oxygen, not stopping the fluids and her iv is infiltrated so she has to get a new one. That's what she's mad about in the picture. Our nurse was in the process of taking out the old one.

Ok God, I get it. I apparently need patience, not sleep. Leave me your favorite verse about patience in the comments. I'm going to memorize them all.

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End of day 6

Well our night started out great. After a good nap in the swing we settled her into bed and we got in "bed" ourselves (I hardly call a bench with a cushion and a chair that reclines a bed, but after a while, you can sleep anywhere), when our night nurse came in, saw stella's O2 sat at 85, and immediately put her back on oxygen. She hasn't been on oxygen in well over 24 hours and has been dipping to 85 all the time with no oxygen!!! I am so so tired of this. Now they will make us wait a full 24 hours off oxygen, whenever that starts, before we can go home. So now we're looking at Tuesday being the earliest we can even think about getting out. Not to mention she took a grand total of 2 ounces of milk in about 24 hours. And also any little movement at all triggers coughing spells that last at least 1 1/2 hours with "aftershocks" for 20 - 30 minutes after that. And let me tell you, night nurses think everybody should be up at night. They walk in and leave the door wide open so it's bright in the room, talk loudly, and jostle her around to make sure she's good and awake no matter what kind of peaceful state she's in when they find her. Then they want to rub on her and pat on her to try to get her to sleep. I'm her mother--I'll get her back to sleep. And by the way--leave her alone for a little while!!!! I just want her to be well, and EAT, and be able to GO HOME!!!


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Who cares about an ounce?!?!

We do!!! Miss Stella just drank a whole ounce of milk and is slowly working on a second!!! Woo hoo!!! Now let's hope she can keep it down. Pray for less coughing and more eating!!!



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Guess who's here?!?!

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On the edge

Well, we're not going home today either, but I figured that when we went back on oxygen and fluids. She stayed off oxygen last night, but it was work keeping her off and this morning she has had one desat (decreased oxygen levels). They did some things that made it better, but said if it went down again she would have to go back on oxygen again. And she's still on fluids because she won't eat. She nursed last night when I came back to the hospital, but didn't really eat the rest of the night. And this morning she wouldn't take a bottle or nurse. So here we are. Another day.



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Ingram genes

This post may not make sense to anybody but the Ingrams. I think Stella has a little Callee Jo in her--she needs a boob in her mouth to go to sleep. Today has been frustrating because we cannot get Stella to eat. Jared brought porter down today to visit so I have been out of the room some today and we had planned to stay in a hotel tonight so I could get some rest. When we left this evening Stella had barely eaten all day. About the time I was going to lay down I texted mama to see how it was going and Stella was wide awake and rooting around on everything. I loaded back up and went over to the hospital to see if all she really wanted was her mama--and she did. She nursed and went right to sleep. Score. But then she had a coughing fit, vomited, and was wide awake and mad. :/ I left them with it though. I have got to try to sleep. Thank you mama and bill for sacrificing your sleep for me. I hope tonight is a better night all around.

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Stella one sock

That's what her respiratory therapist said her Indian name is. She wears one sock over her sat probe and no sock on the foot with the iv.



Breathing treatments today....


Wanting the paci more because it hurts to swallow but she still wants to suck. (we assume this is why she won't eat.)


No real changes today. Still on oxygen. Still on fluids. Guess we'll see what happens tonight. I doubt we'll go home tomorrow either.
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Not coming home

I knew last night with all the o2 sat issues that we probably wouldn't be going home, but hadn't really accepted it until this morning. I am so disappointed but I also wouldn't feel comfortable bringing her home like she is now. Her o2 sats are still very labile, she is in obvious pain from all the coughing, and is not eating.
So today we are back on oxygen and back on iv fluids.



Jared and porter are on their way down for a visit. I am excited to get to see him today but that will mean I will be away from Stella this afternoon. We are all going to stay in our hotel room his evening so I can get some sleep. Mama and bill are going to stay with Stella.
It's been an upsetting morning, but at least I get to see the big p pot this afternoon.

:/

Well after such a good afternoon we had ourselves all excited about possibly getting a good night's rest and I think we had our worst night of sleep so far. Steal slept great but her sat monitor went off all night long. And I really mean all night long. Her sats hovered around 85-86, which is below the 88 threshold for staying off oxygen and going home. We did not put her back on the oxygen and she was very comfortable and slept well. It was really us that were bothered by it. If we had been at home we would have thought she was an angel. So my questions for the peds team this morning are what is the data (if any) behind the 88% threshold and at what point are we treating a number and not the patient? I really want to go home, but if there are some good reasons for staying then I want to stay until this is resolved.
And since we now have to consider the flu issue back home I want to know if and for how long porter needs to stay away to see if he is going to end up with the flu.
But, oh how I am looking forward to more than 30-45 min of sleep at the time. I am really amazed at how little sleep I can actually function on.

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Nighty night!

We have had a great afternoon. The iv fluids were turned off and Stella has nursed twice and was not struggling to breath while she ate!!! She did have a bad coughing fit after the second time and puked some of it back up, but overall she is doing very well at eating now. I feel much better about the possibility of going home tomorrow afternoon. Her sats are continuing to improve and are staying in the 92-94 range even when she is asleep!!! Just this morning they were in the high 80s when she was asleep.
This little devil machine has been the thorn in her side for the last 4 days.



It's the sat monitor and it beeps loudly and annoyingly every time her sats drop or if it can't pick up good due to motion. It's on her foot, so you can imagine how often it is going off. We just about need a person full time to stand by it and push the alarm silence button and when Jared is here that's basically what he does. It has gone off at least 10 times while I have been typing this. But we can say bye bye to it tomorrow!!! Hopefully.
Well, now that I just had to get up and check it to see why it's going off I find out her sats keep dropping to the mid 80s, which is why it is beeping--not the motion. :/ But she still looks very comfortable and peaceful. I moved her around a little in her bed and they came up some. Ok, I'm going to try to sleep while I have the chance!!!
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Afternoon update

The update before this one was supposed to be posted this this morning, so I've really had 2 afternoon updates, but whatever....
Count on porter to keep it real. Jared went home today and got porter from school. Jared says porter squeeze him so tight when he picked him up. They have been playing in the front yard when porter turned the "water feature" into a toilet.






Stella is still off oxygen and doing well. This afternoon they also stopped her IV fluids to see if that would help her appetite. If all goes well, we could be heading home late tomorrow afternoon. YEA!!!!!
This sweet baby has been swinging away for a while now and feeling pretty good!!



But the bad news.... Porter has been staying with Nicole and the girls, and Caroline was diagnosed with the flu today. So I may not get to see porter when we get home, and may have to keep him away from Stella or keep Stella out of the house for a while longer. :/

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RSV day 4

We are off oxygen for a trial. If her sats stay 88 or better sleeping and 92 or better awake she can stay off. She has done pretty good with only one episode of unacceptable sats that improved with suctioning, CPT, and repositioning. She is still eating very little, and requiring iv fluids for hydration. Getting better every day!!



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Oops I did it again!

....blog at 3:00am. Actually now it's 3:40. I started to blog at 3:00, but we had more stuff going on.
It started with waking up because we thought she was hungry. She wasn't. She wet through her diaper and we had to go through the process of unhooking things to get her clothes off and redress her. Then her iv infiltrated and they had to take her and put in a new one. Then we tried to feed her again. Nothing. Then a breathing treatment. And tried to feed her one more time. She didn't eat. So we are all settled back down and trying to get another nap.
Before all this we had slept for a few hours. :)
Sporting her new iv. In the foot this time.


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Breathing treatment and CPT

Just finished a little flurry of activity. She is awake more than she has been all day today, but a little upset. She has been coughing more for the last few hours. Hopefully tonight will be a better night than last night since we are now giving her Tylenol around the clock.

Up and at 'em

We all got a little rest after the festivities at 3:00am. Stella got some Tylenol and she felt much better. She coughs and then cries because it hurts to cough and that makes her cough more, and so on. So the Tylenol finally gave her some relief. She was able to drink 2 oz of milk once she settled down, and has drank another oz this morning. She just got a breathing treatment and we are waiting for the peds team to round and tell us the plan for the day.


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Stella's exciting day

Most recent pic...




Ambulance ride...




Pic before seeing Dr Eldridge on Tuesday morning...




I hope this is the last time I blog at 3:00am. Ever. Stella has rsv and has been having some difficulty breathing so she was admitted to ARH Tuesday evening and then transferred to sacred heart on Wednesday. Three words: exhausting, stressful, and heartbreaking. Stella has had little peace with all of the breathing treatments, suctioning, and trying to eat (which has not been very successful). But she does look a little more peaceful right now...




This is after an hour of working on her O2 sats. She had been on Oxygen in Andalusia, but they left it off when we got here to see how she would do. She has been teetering on the edge of the oxygen threshold this whole time, but an hour ago was just staying below it and visibly struggling more, so they put her back on. Hopefully she will get a little rest now. Mama and daddy--not so much.

Wow. Our neighbors will love this!

Jared and porter went to mobile with Porter's super fast jeep yesterday and installed an air horn....

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Porter singing to Stella this morning

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Happy birthday porter???

He found this and says he is going to wear it until he turns 4 and has a party.



Then he said he was a unicorn.

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But a bad night

Have you ever woken up exhausted? We took 2 steps back last night. Stella went from getting up once 2 nights ago, to getting up 3 times last night and being a little hard to get back to bed. *yawn*


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Better day today

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