you being a cutie
chewing on your finger=)
hi baby=) this was a good week. i'll talk about the doctor's appointments in a minute, but first i want to tell you something else fun. there have been different nurses coming over to meet you to potentially help mommy and daddy take care of you, but we have just not felt great about most of them, and the one that we did like got very sick a week after she started coming over=( so after about 9 nurses, we decided that we were very picky and that was perfectly ok, and that we were ok without a nurse for now. we told the agencies thank you so much for working so hard to find us a nurse, but that we were fortunate enough to do this by ourselves for now. we told them what we were looking for, admitted that it's probably mary poppins, and asked them to call us if they found this combination in a person. one agency said thank you so much for letting them know and they supported us in trying to find what's right for our family...but the other agency said they thought they had a mary poppins for us and if we meet her and didn't like her they wouldn't send us anybody else if that's what we wanted. so i agreed to meet her but was very convinced i actually didn't really want help right now-i think it made me a little anxious (shocking, i know) to have somebody in our house taking care of you when i could be doing it myself. so she came over the next morning, and guess what...we liked her so much! it amazes me that we actually feel comfortable having her take care of you. you spent lots of time learning her face and seemed pretty happy with her yourself. she was very flexible and told us that she could be here as much or as little as we wanted. so yesterday was her first day. she hung out with you while mommy slept after working all night. when i woke up she told me you had been smiling at her all day long and you two had lots of fun together. that makes mommy's heart very happy=) you want to know something else funny? this is kind of making mommy feel like a grown-up for the first time....picking a "babysitter" of sorts for my sweet little girl-isn't that weird?? i think you'll probably laugh at that when you're older. it will probably be weird imagining your mommy not feeling like a grown-up=) so there's that bit of good news. mommy can sleep after working and daddy can get his work done from home. and we can just walk into the den and play with you if we want to at any point in the day, but we can relax knowing that you are safe with miss aaliyah. all good things=)
so now onto the doctor's appointments. tuesday we went to see dr schmidt, your pulmonologist. we like him very much. here's a little ironic twist to this story-daddy had to work that day so mommy's friend margaret was coming over at 8 to drive us to mcv where the doctor is...as i'm walking you from your room to the front door i hear something outside getting really loud and look out the front door only to see that it's POURING sleet---yes sleeting and snowing--something that mommy doesn't know what to do with. so not only do we have to get you out in the horrible cold and wet weather, we have to drive in the sleet downtown and navigate through the nightmare that is mcv. but we were a-ok=) no worries. mommy is kind of being dramatic. so dr schmidt was very pleased to see how you were doing-he tested your CO2 in the beginning and end of the visit. it was always down in the 30's where it should be=) he decided to wean the rate on your ventilator from 35 to 30, and he told me in a week if you still looked like you weren't working harder to breathe that i could lower it to 28. then after we lowered it to 30 they did a bronchoscopy on you (you have been having some blood in your secretions so they put a little camera down your trach to see what was going on down there) and it looked red and irritated-dr schmidt thinks it's from when we couldn't get the trach back in around christmas and you had so many trach changes within 3 days-the kind of trach you had then was a little like sandpaper =( and he thinks some bacteria just hopped right onto the irritated places...so he gave us some antibiotics to give to you and hopefully that will clear the bleeding right up. you got pretty upset during the bronchoscopy so dr schmidt gave you and me some time to snuggle and calm you down, then he tested your CO2 again-and it was still great! that made him very happy-he seemed a little surprised actually-and he said that i could go ahead and lower the rate down to 26 in a couple weeks if all looked well at home. then we see him again in a month. i asked him too if it was outrageous to think it was possible for you to get the trach out this year and he said it's not impossible, but not definite either. that you would tell us if you needed it for longer or not, and that if it's not out by september/early october that you would need to keep it in for the whole winter to help you if you got sick. that's just fine sweet girl. you let us know. we will be happy either way just to get to play with you and watch you grow and learn your world.
then thursday we saw dr falterman, your cardiologist. we love her too. we were so happy to see that you weighed 12 lbs 12 oz now=) you are growing so great sweet girl. she did another echo and it showed that your pulmonary hypertension is getting better!!!! your pulmonary pressures were about "75" when you left the hospital, then a week after you got home they were 50, and now they're 30-35!!! normal is 25, so we're getting there. you're on a huge whopping dose of medicine for it so obviously we wish that had already fixed it, but we're moving in the right direction and we will be as patient as we need to be. we see her again in march and hopefully we'll get more good news then=)
grandmother (your gigi's mama) got here yesterday-it was very special to see her holding you and watching you two learn each other's faces. she cried and cried and hugged mommy and told us how precious we both were-she is very good at being a grandmother=) she is staying with us for a week so you two have lots of fun times in store. so now you've met 4 of your great grandparents-we think that's so lucky=) you have two more in texas-they are such precious people and we know you'll love them so much. and then you have one grandmother and two great-grandparents in heaven who i know are so jealous, but so thankful that they didn't get to meet you as soon as we thought they might. they are no doubt thrilled that we get to keep you and therefore they can't meet you quite yet=)
i wanted to show you how you like to sleep. that's what this picture is of=) there's also a picture showing how you've started chewing on your finger=) i love it. i can't remember if i've told you all this stuff but it's very fun so i want to tell you again. first of all, one of the few times you get fussy is when you're sleepy. (you're a very very good baby and really don't get fussy much at all-you give us lots of smiles and you sleep through the night and we keep thinking how, if you weren't sick, we would be spoiled rotten by what an easy baby you were!) but when you're sleepy you just need me to hold your passy in your mouth and put your cheek in my hand, and i pat your head with my other hand. the greatest melt-mommy's-heart moment is when you reach up and put your hand on mine, sometimes squeezing my hand a little tighter against your face. you'll look up at my eyes for a little bit and then those sweet little eyelids start drooping and you fall asleep pretty quickly. what a sweet little thing you are. i can't even stand it. and here in the picture it shows how you like your head to be wrapped up in a blanket. i think it's hilarious and so cute. it's like you know that when we snuggle your head in there it's time to start closing your eyes, because that's what you usually do=) you'll wiggle a little and turn your head up and smush your face into the blanket a little bit (no worries-you're on a ventilator and there's no concern that you couldn't breathe) and then turn into sleepy mode. you are the most fun to learn=)
you know what else is fun? when you're laying on the floor and we come up and look at you upside down-you love it=) your little face lights up and you smile at us and your eyes get really wide and you tilt your head back as far as you can to get a good look at us...you usually start flapping those arms around-it's great=)
you decided to take a bottle a little better this week. karol, your occupational therapist came, and she and mommy and daddy were working with you to help you drink from the bottle. you would kind of cooperate a little-if we'd squeeze some milk into your cheek you'd swallow some or let some go down your chin...so not too discouraging but no real success either...so then karol and mommy were talking and i looked over and saw you chowing down taking the bottle from daddy! sucking (almost) like normal and you drank the whole thing!!! we were very excited and decided that you will not be controlled=) sounds like somebody else, or maybe two somebody elses that i know...
this is something else fun. when you're laying on your back and we're sitting towards your feet, you'll start kicking your legs around and prop them up on our thighs, or our hands, or whatever you can reach. it's like you just wanted to play footsie with us or something. i love it=)
it's been fun (this is going to sound weird) realizing that i'm a typical mama. getting so giddy excited when you gain weight, or when you hold your head up by yourself, or when your discover your fingers...lots of things make us goofy sweet girl=)
ok so i wanted to tell you what i've been learning lately. you know how mommy told you that i get anxious a lot of times? i had been thinking about how that's not going to help anything and what can i do about it. God was very sweet and gentle in bringing to mind this verse. it's philippians 4:6-7 and it says "do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. and the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus." it made me laugh a little bit because it's so obvious, isn't it? i just imagine God finally saying "well my goodness-it looks like she's not gonna get there on her own so i'll just remind her that i said something very specific to help her when she's anxious..." and so here it is. i feel like it's so simple, but as we know by now, i operate better when things are that way. i've been just telling God the obvious-things i worry about so much like when i think people can't take care of you unless they're me (i'm laughing on the inside as i type that)-incessantly-to the point that i feel out of control a little-like i know it's not reasonable to worry like this but the truth is that i am worrying that much and i need His help. and i just ask Him to take care of it for me and help me to realize continually that He's in control and you are His and therefore in the best Hands possible...and it's been helping=) i realize that i really do make being a child of God more complicated than it is...and i guess that's a little bit of a relief;) it's sweet when He shows us that loving Jesus with our lives and living in a way that brings Him glory is actually do-able. how nice. i think i'm rambling-you'll get used to it i think=)
i love you baby-you are our heart's delight and we are so lucky that you are ours.