Feb 12:
We're home! :) Does anyone have any Old Navy brand 6-12m shirts or sweaters we might be able to borrow? They seem to be the ONLY thing that fits her strange proportions.
Feb 13:
My body still wants to be on EE time. I couldn't barely get my body to keep sleeping after about 3AM (even though I had only slept about 10 hours in the last 3 days) which was 9AM in EE.
I LOVE having a child that takes naps and sleeps 11 hours at night!
Feb 14:
If you could pray with us that Olive will take a bottle and use the bathroom after her second nap of the day - it would be much appreciated!
We having to take olive to Grand Rapids Area Pediatric Evening Service for dehydration and no wet or soiled diapers - please pray with us that this wont be too scary for her and that she will be ok. thanks!
So we were on our way out of the door after the kids got up from their late nap, and Olive pooped! She only took about 4 ounces since - but I'll take it! We aren't going to take her in to the after care center tonight as long as she stays happy and alert.
Feb 15:
Olive is on her way to an urgent ped apt with Karl because she is severely constipated. We thought we were good after last night - but now that she got all her gas out last night, you can feel that she has a serious issue through her belly - you can nearly SEE the issue. She is slipping in and out of their weird daze/half sleep, and I think it's due to dehydration. If you could pray with us - that'd be great!
Karl is convinced that Olive is just extremely stressed out and over stimulated. So we are going to let her nap as long as she needs - she's going on about an hour and a half now. And when she gets up we will see if she will eat.. if not we may be going to the ER tonight.
I think it's a combination of a lot of things, the flight, the complete change in her food and schedule, the over stimulation of all the visitors, the vaccinations, and pokes at the doctors.. etc. I'm not so concerned about why it's happening, more that the dehydration doesn't get too bad. unfortunately there's not much we can do about most of the stuff anymore - just try and give her a quiet couple of days.
Our doctor called - she said that Olive's blood sugar is extremely and dangerously low and that we need to take her to the ER right now, and put sugar under her tongue. She said she doesn't know why - it could be a metabolic issue. But we'll find out more when they run tests on her there. The pediatrician sounded panicked. Which has me feeling panicked. Please pray for us!
Her sugar was 17. Now it is 35. They are going to check her again in a while. She was extremely upset and is sleeping now.
phone is going to die. sugars are coming up. were at 50. she's awake and actually looks alive. contact me in Karl’s phone and look for updates in his Facebook.
I am on wifi at the hospital now. She is SO cranky, and SO tired, and SO hating every one right now :( Her sugars dropped significantly again - and they don't know why. She has been getting glucose in her IV so they shouldn't have dropped. That points to something metabolic unless it was just a fluke.
Olive has another blood draw in about 20 minutes.. praying it comes back normal!
she is at 52 still... waiting for the nurse to find out what’s next
they are upping her dextrose level to 10% to see if she responds to that.. its appropriate and not unreasonable since she is not eating anything still.
They have a TON of labs they are going to run in the morning, and still waiting for results for some tonight.
It's still possible that it is just stress related. We'll get a echocardiogram tomorrow, along with a speech therapist to help with the eating issue, we'll also be seeing an endocrinologist too. They're going to be drawing blood every 2 hours for glucose testing. please pray for her - as she is already not tolerating it well now.
as soon as I finally get her to sleep after her last sugar - someone calls the wrong number at 2 in the morning! And then proceeds to try and explain to me who they're trying to get ahold of and get that number from me.... i try and tell her it's a patient room and she needs to call the nurses station. She then asks me to give her that number... haha. I don't know it's 2AM and now I have a screaming baby on me! Olive's last blood sugar was 89 - just above acceptable.
this blood sugar was 109. She hasn't hardly slept at all yet. I am SO exhausted, and would give ANYTHING for an hour of good sleep right now. I asked if they could give her something to help her sleep... she didn't think so. here's to hoping.
that would be a no :( but we have added a GI consult tomorrow to our laundry list of things to do.
Feb 16:
Her sugars are responding well so far, she has been at 178 and 151. I'm hoping when they test her again in about 20 minutes that it's not going down again. She didn't sleep more than a few minutes per hour last night - and neither did I. Every time she would settle enough to get tired, they'd come back again and get her worked up.
This morning she had a horrible phlebotomist. I wish they would learn to listen to the mothers. I told him the vein he was going to try collapsed last night - and I didn't think he'd be able to get enough from it (needed min 14cc) - and of course after 5cc it collapsed. He then proceeded to dig around to find the vein next to it. Mean while Olive is literally shaking involuntarily and has a HUGE BM from the pain. At one point she looked like she wasn't there any more - which really scared me. He pulled out and I asked him to get a topical spray for the next one, because he was going in RIGHT next to the vein he just collapsed... and he wouldn't. I was fuming. What do you know - that one didn't work either. (listen to the mothers!). So then he proceeded to go in her hand. She got so worked up and upset it wasn't even right - she was looking right through me, something wasn't right. It was awful. After that, I swaddled her and thank God she went to sleep.
Her pediatrician came in and said that no one seems to be able to come to agreement on what it could be. No one feels confident in one thing over another - but they're still leaning towards something metabolic because her sugars stayed so low for so low even with treatment. All labs are coming back clean right now -but they ordered a whole lot more this morning. I am praying that now that she's finally A SLEEP, and she had the BM, that maybe she will take a bottle when she wakes up....
Doc said we'll be here at least 2-3 days, and quite possibly longer.
Please pray for me to be able to handle all this - I am NOT good with needles and seeing my kids in pain.
And please pray for Karl who has to still go to work during all of this even though he wasn't nothing more than to be here with us.
And please pray for our kids that they won't get too upset that after just getting their mom and dad back, we're gone again.
Olive's blood sugar is back to 83. JUST above 'ok'. But the nurse didn't seem thrilled that in 3 hours she went from 151 to 83 still getting the same amount of sugar...
Olive's sugar went back up to 108 - which is perfect. Thank you for praying! Here's hoping she stays there for next time!
She ate about 4 ounces with out protesting! And her sugars have been ok for now. The plan is to treat her for Ketonic Hypoglycemia unless labs come back different tomorrow.
We'll have to take her blood sugar frequently, have strict feeding schedules, and treat her according to her blood levels. If she refuses to eat, she will quickly go ketonic again -and we'll be back in the hospital for fluids. So, here's hoping she decides she's going to eat again and not pull any more eating strikes anytime soon. She's actually giggling with Karl and seems to be in much better spirits. Hopefully we'll only be here a few more days. Unfortunately from thrashing all night long and all day today when they were drawing from her - she has dreaded about six dreads on the back of her head :(
Feb 17:
We have had a VERY busy day today. Olive had an ECHO today - and they found out her heart is worse than what we were expected. She has and ASD like we thought, but it WILL need to be repaired. She also has a PDA, but it's not going to need to be fixed. They will try and repair the ASD with a patch, with a process that's not super invasive (not open heart) and would only require a day or two in the hospital. The doctor who saw her said he's done TONS of them, and it's not a scary process. If the ASD continues to grow with her, and it's not able to be fixed by a patch when they schedule her (she needs to grow) - then she will have to have open heart. We hope that won't be the case.
We also got her medical report and it had different information than we were told. She was admitted at 18 months and not 8 months old. Also she was born with inter-cranial hemorrhages and swallowed meconium, and was septic. She also has an issue with her brain, being Asymmetric lateral ventricles,right 9mm,left 5 mm in the frontal horns. Which is Chinese to me - so a Doc will hopefully fill us in soon.
She is eating now and took 9oz tonight, and her sugars are staying level. So, if she continues to eat well, we might be able to go home tomorrow or the next day :)
olive took 10oz!
She is starting to be happier!
Feb 18:
Olive is going to get a Sedated MRI if they are able to fit her in to check for a brain abnormality that was documented but not followed up on in Serbia. If they can get her in, we'll go home tomorrow. If they can't - we'll have to do it outpatient in a couple weeks, and we'll go home tonight (assuming she eats well)
Olive is showing signs of being stressed today. She hasn't stopped grinding, biting her fingers, and pulling on her hair since she woke up. I think what ever tolerance she had for all of this is GONE. I am asking the RN if we can just plan on deferring the MRI.
Well unfortunately they're not going to push off the MRI. It'll be done tomorrow sometime. She's an add on - so I'm hoping sooner than later. As long as she does well they'll let her go home once she's recovered.
I have an amazing husband. He took work off tomorrow so I could go home and see my kids and sleep at home. I didn't even hint or ask!
Feb 19:
they keep failing at getting an IV even with a nicu nurse. I am starting to get upset. if they don't get it figured out soon I'm calling it off
I ended up telling them that they could not try again until they put her under the gas. Everyone said that she has the hardest veins. But its still not fair to put her through that. She's having the MRI now. Hoping to hear she's doing well and ready for us to see her in the next half hour.
she is doing well and we should be able to go back in about a half hour.
She's back in the room with us. She's eating. And I am praying they will send us home in the morning, and not bug her too much tonight. She's had enough - and I've certainly had enough of seeing her stressed out.
Olive has eaten 21oz since about 4:30pm! Not bad!! We'll find out the MRI readings tomorrow and will hopefully be going home in the afternoon.
Feb 20:
Doc Hoffman came in and said to let her go home!!!!!
Olive learned her 4th sign - she is now signing Daddy, Eat, More, and Up with consistency! She is going to be drinking Pediasure all the time - so if anyone has any left over that's still good, we'd be happy to take it! Or if you have coupons - we'd love those as well! We're waiting for daddy to show up, and we'll be heading home! Yay!
olive is one HAPPY girl now that she is home! And we are SO thankful for everyone's support. Truly!
Just poked Olive for the first time for sugars. Not bad at all. The needles that we are using are so tiny, she barely flinched. Whew!
Feb 22:
I am officially on my first day's duty home alone with all the monsters. Things are going well.. having foster kids helped prepare us for life with 3. And taking care of the kids is not a big deal at all - but keeping up with their messes is! Re-training them that mom and dad don't take the whining and persistent bugging is going to be a challenge too..
Meant to update that today Olive's ped. secretary said that the MRI came back, and "it won't require further medical treatment". Not sure the details yet - but that's good!
I kid you not - Ethan said to me today "Can you go to ******* and get me a brother?" He is very very proud to have 2 sisters. He tells everyone he knows. But, he has been talking A LOT about a foster boy we had about a year ago, and asking if He can have a brother too. lol. I think it'll be a bit before we start talking about adding another - but I think Karl and I both know that we'd like to add another angel with DS to our family sometime, and perhaps it will be a boy!
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