1.13.2008

One year check up

We went to the pediatrician last week for their 1 year check up which was fairly uneventful (if that can actually be said about a two hour trip to the doctor with three babies). We got pretty much the same report that we expected...Avery is growing and gaining weight fine, she now weighs 17lbs 6 ounces (according to their scale which I don't always think is acurate) and is 28" long. Developmentally she's doing wonderfully, eating well, drinking her bottles well, babbling, crawling, pulling up...so no real worries with her.

Lily is still not gaining weight like they'd like her to. She's 15lbs 13 ounces and 26 1/2" long...so she's only gained about a pound in the last two and half or three months. Her GI doc asked us to add Carnation Instant Breakfast to her formula to boost her calories. I did it, but only for a couple of days because there appears to be quite a bit of sugar in that stuff which my ped agreed with. She mentioned something called Benecalorie so I asked GI and they said...instead try to add 1 to 2 cans of Pediasure. So, my baby who struggles to drink 16-20 ounces in a day of her formula is now supposed to drink an ADDITIONAL 16 ounces of another drink? Yea, right! That's gonna work! Normally I am really happy with how responsive the GI doc and his nurse are to my questions (there are many almost weekly) - but this one just made me mad. The whole problem with her weight gain is her trouble with drinking her bottles. She's a great solid food eater so my ped said well boost her calories with her solids and I said okay, but what about hydration, to which she said make sure she eats lots of the watery foods like applesauce (which has no calories!!!!) Ugh, sometimes this whole feeding thing makes me crazy! I am trying to get the GI doc to do a referral to his nutritionist but he just wants to keep waiting and see what happens with her weight by our next visit at the end of the month. Anyway, other than that she's doing well developmentally...crawling, babbling, pulling up. Her reflux is pretty much under control which is always a good thing. We're getting her an OT (occupational therapy) evaluation in a couple of weeks due to my concerns about her sensory processing issues. I think some people think I'm overanalyzing her personality and development, but I feel in my gut that she's got some issues going on that need to be addressed, not ignored. Several months back I worried that she might be mildly autistic due to some traits that she had at the time, which she has now pretty much outgrown...but I still think there is something going on with her. So, I'm hoping for some guidance on how best to help her after the evaluation. For now I continue to approach her with calm and less stimulationg, not more when she has her moments.

And last but most certainly not least, little Zoe Rose...she is doing amazingly well!!! Except she needs to not gain anymore weight. We got to cut her calories at our last GI visit which I was very glad about and our ped has now added "obesity" to her chart...I'd like her to add a disclaimer that reads "due to severe chronic lung disease and side effects of the life saving steroids she has had to be on". I know her weight will all even out over time. She's still on the steroids for her lungs but even with the last wean in November and her increased activity during the day she is losing some of her puffiness. According to the ped's scale she is 18lbs 2ounces (which I don't believe, according to my scale she's pushing 19lbs) and is 25 1/2" long. It's kind of funny seeing how we visit so many different specialists and they all weigh her and measure her and everyone gets something different - she has even ranged in length from 25 to 26 inches depending on who measures her. Anyway...she's doing great. Staying around 1/2 to 3/4 liters per minute on her O2, as my other post said, she can now roll over all by herself and is sitting by herself for short periods. She still has quite a bit of strength to build up in her arms and legs...but she'll get there. Our PT said she can tell Zoe is used to someone holding her because of how she sits and the fact that she doesn't really have the reflex to catch herself if she falls over(we're always there to catch her).

As far as follow ups for Zoe go - we'll continue to see the pulmanologist every 6 weeks as he monitors her progress, lung development, O2 requirements, and meds. We have feeding therapy at home once per week and at this point Zoe is not taking anything by mouth...no bottles, no sippy cups, no solids. I've taken the advice of other moms of multiples who have preemies with feeding issues and am trying to make eating a fun experience. Whenever Avery and Lily eat, Zoe is in her high chair right next to them, watching and I hope learning. One night I just rolled up her sleeves, put some oatmeal and some yogurt on her tray and just let her play in it - it took her a while to realize it was even there and her fingers did eventually go in her mouth so I thought okay, I'll try this again. The next time I gave her a spoon (just like her sisters) and dipped it ever so lightly in the oatmeal and handed it to her...it too eventually went in her mouth and she kept sucking on it. So I gave her a little more and then a little more. I let her control it. This is my standard practice at the moment. The amount she gets is not even measurable, but at least she's putting something in her mouth. I got a little full of myself though one day and I attempted (after much spoon sucking on her part) to give her a small spoonful myself...well she acted like I had poisoned her! She gagged, turned red in the face, then turned her head to the left and fell asleep (this is a behaviorial tactic of hers when she is in a stressful situation, she turns to the left, breathes heavily for a few minutes and then is fast asleep...however, if it is during a feeding session and she is in her high chair, as soon as you unbuckle her belt she wakes up!) I know this will be a long, slow process for her...and I keep going back to what Dr. Kupke told me last March - that her progress won't be measured in days but rather weeks and most likely months. So I just have to make sure that I figure out how to balance being patient without just giving up or "cutting her too much slack".

Her ENT appointments and work at the Speech School will also continue as we try to assess what her ACTUAL level of hearing loss is and develop her language skills. Behaviorially she acts as if she's maybe mild to moderate in one ear and moderate to severe in the other...according to testing she's severe to profound. Is this due to the fact that developmentally her brain just doesn't fire quickly enough for the test to pick up the response to sound? Or that to some degree she is still learning to locate a sound eventhough her body language clearly tells me that she hears it she just can't find it? The good thing is that Dr. Herrmann is not in a rush to do a cochlear implany. He wants to give her time to grow, for her lungs to get stronger (b/c surgery means intubation), and for us to keep testing her. I'm glad I don't feel pressured at the moment and we've all seen here at home how incredible her progress and growth has been since she's been home.

Zoe will also be getting an OT evaluation to help her with her fine motor skills. her PT has really helped her a lot and our feeding therapist is an SLP...but now that she's stronger I think we need to fill the OT gap as well.

And finally, we'll get getting an endocrinology consult soon due to some issues that may be going on with her hormone levels. I am very eager to see this doctor and hope they can get us in soon...she is doing so well in so many respects I want all her bases covered and monitored!

So that's the big one year report on the girls. We've survived the first 3 1/2 months of RSV season and have 3 1/2 more months to go. We appreciate everyone's understanding in our limiting visitors and our outings (we don't go anywhere except the doctor). The holidays were fun, but there was definitely something missing in that we did not go to Mema's with Richard's family and we haven't seen our neice or nephews in months. This breaks my heart because I miss them so much...but they and their parents are great and understand how critical it is that our babies make it through this RSV season. I don't think I've ever looked forward to Spring as much as I am now...I can't wait to get out and show the girls the world!!! I want to go to the Zoo, the park, just to get out of the house with them and introduce them to ALL of their family and friends will be a dream!

But that will have to wait....three and half more months. So far we've gotten by, until today...Avery has an ear infection and Lily has the sniffles (picked up at the doctor for their well check up last week)and we had to get Avery swabbed for an RSV test....please don't let it be RSV and please, please, please don't let Zoe get sick. So far we've kept Avery and Lily away from Zoe which breaks my heart because I so worry that she's left out so often due to her developmental delays and the fact that she just can't quite play with them yet. I always make sure that they are with eachother throughout the day and it is just the facts right now...Zoe isn't independently mobile and the other two are. I know in my heart that they will all bond in time and will all be close, but I just feel such guilt about her not being able to enjoy what they enjoy. But then...I try to go back to what a good friend told me that our realities are diferent even when we grow up in the same household. This is what Zoe needs, this is what her reality is, and it's okay...she'll get there. Avery and Lily are always quite curious about Zoe or at least all the things that are attached to her like her feeding tube, her nasal canula, her hearing aids, her pulse ox...all these things that they want to grab and shake and put in their mouths...Oh and Zoe grabbed her toes for the first time too! I remember before she left the hospital we were working with OTPT to get her to notice that she even had feet - and now even she is trying to pull her pulse ox off :)

I realize that this post and gone on and on and on so maybe that will make up for my dry spells the last month or so. I have so much more I want to write about...namely the whole feeding and psychology of it all...but I'm still working on that post. For now take care and hopefully these videos will start working!

2 comments:

jaymie_g said...

Hello,

I just wanted to take a quick moment to post and tell you how delightful it was to read your blog this evening. I linked over from another preemie blog that I found awhile back --Hallie. Upon reading your older journal entries I started seeing references to places that I knew and low and behold, we're both in the Atlanta area! I have 3 former preemies (the oldest is now 12--oh my goodness!), but none of them were micropreemies. Anyway, your blog was an inspiration in the way you are handling the huge challenges in your life. I hope you don't mind if I check back in every so often even though I don't know you!

Stay warm with the bad weather coming.

Sincerely,
Jaymie G.

McTriplet Mommy said...

Wow - sounds like an exerpt from my life. Lorne does not have the hearing impairments - but other than that - sounds like my kids!

Sullivan is - what I call a "dream preemie" - a bit small but healthy and developmentally and cognitively doing great and etas well.

Isaac is slightly delayed and her growth is extremely poor. We tried Carnation Instant Breakfast and are using Pediasure now. He's doing great - but the feeding and growth thing are our main concerns.

Lorne, oh, Lorne. Things are SO relative. Putting food in his mouth - regardless of quantity or what it was - my goodness - he put FOOD in his MOUTH!!! He has vision issues but not auditory - but that child amazes me. All that he's been through, all that he faces - sitting unasisted (or with minimal assisted) at this age was HUGE. Yet - I did worry about the bond the other two were forming without him. I & S shared a room - but L stayed with us so we could hear the pulse-ox while sleeping. He was so behind developmentally, he was HUGE (way overweight because of his tube - not so much the steroids)and we were so worried.

I swear, Keira, I wish you could come hang out with us for a few days. I would LOVE for you to see Lorne - the little guy who two years ago I would have compared almost *entirely* to Zoe - now. To see him running around chasing his brothers, to see him climbing, asking very intelligent questions... these little ones amaze me. She will amaze you, too!

Talk soon, so happy to hear your update!

Kara

All time favorite video of Zoe!

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Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31