Done

Lanie’s right eye surgery to remove her cataract is finished. She did so well.

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She’s much more interested in getting the eye shield off of her face this go round though so that might be a challenge. It’s amazing how much growth can happen in just two weeks. When she had her left eye done we had no concerns about her rubbing her eye. This time is much different. She’s got opinions about it.

We’re now on our way home and in hoping to get a nap before Lanie’s post-op eye appointment this afternoon.

I’ll write later.

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Filed under: Uncategorized

Waiting

We’re in the waiting room at the surgical center. Lanie is having the cataract in her right eye removed and the tear duct in her left eye opened.

This wasn’t scheduled until yesterday afternoon. We knew it would be done within the next few weeks but didn’t realize it would be scheduled with such short notice. It kind of left me with little time to worry and fret so it worked for me.

For some reason I’m more nervous about this surgery than I was when she had the left eye done two weeks ago. She didn’t seem bothered at all though.

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She slept and smiled, and smiled and slept.

I’ll post later on with an update.

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I still have my other kids

There has been so much going on with Lanie that I’ve neglected to post much about the 9 other children running around here so here’s a cute picture of some of them.

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Maggie’s duck face…  Kait taught her to do that.
Funny not funny.

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Filed under: Friends & FamilyGabeGod is.KaitLucyMaggieMatthewSam

I still have my other kids

There has been so much going on with Lanie that I’ve neglected to post much about the 9 other children running around here so here’s a cute picture of some of them.

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Maggie’s duck face…

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Filed under: Friends & FamilyGabeGod is.KaitLucyMaggieMatthewSam

One cataract down, one to go.

Yesterday was a very long day even though it really wasn’t.  I think it just felt crazy because we were exhausted and I didn’t get very much sleep at all the night before Lanie’s eye surgery because, well, she was having eye surgery to remove her natural lenses and she’s my newborn baby and I just couldn’t stop thinking about it.

I wasn’t able to sleep until about midnight because she couldn’t eat after midnight and I was trying to shove as much milk down her throat as possible even though she was like Mom, enough already! Then, when when I did finally get some shut eye it was a fitful rest and I was up at 2:30, then 2:45, then 3:00.  I finally just got up at 3:30 and at 4:00 Rabbit’s alarm went off.  We got out the door by around 4:30 to get to the hospital by 5 for her 7 AM surgery.  We signed in and then waited our turn to finish registration and be taken to pre-op.  Once we were in Pre-op we talked to several nurses, the anesthesiologist, and finally Lanie’s doctor.  Everything was as it was supposed to be.
While we waited, however, I developed a nasty headache that has been hanging on since.  Lanie, however was a trooper and didn’t seem fazed by the commotion around her or the fact that she hadn’t eaten in 8 hours.

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The hardest part of the day was giving her to the nurse when she came to get my baby for surgery.  I told her I wasn’t ready yet but the nurse just smiled and said she would take very good care of her.  Rabbit and I walked back to the waiting room and sat for what seemed like many hours while we waited for somebody to tell us everything went well.

A nurse came in about 30 minutes later and said they had just started her surgery, that she was doing well with the anesthesia, and that Dr. Mickler had decided to remove the cataract from just the left eye for now because the right one wasn’t as bad as he had thought and it would be better to wait a month or so before removal.

It was a little after 8 when the doctor came and told us that things went very well.  We were so relieved.  Really though, all I wanted to do was hold my baby and that was going to be a little while more because she needed to be woken from her anesthesia first.

My OB doctor, Dr. Medlock, walked in and saw us sitting there and came over to say hello.  He asked what Lanie was in for and we told him about her cataracts.  He chit chatted for a few minutes and then left to find his surgery patient’s husband, who was apparently not in the waiting room because Dr. Medlock stood there turning in circles like me in the Walmart parking lot when I forget where I parked, then he left.
About 5 minutes later a nurse came and got us and I was so very happy when I finally got to hold my sweet baby girl.
She was a little bit agitated but was consolable, and she was super hungry but couldn’t coordinate sucking and swallowing and that was ticking her off a little too.

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After just a half hour they discharged us and we went home.  Lanie was scheduled for an afternoon appointment with her eye doctor and that went well too.  He showed us what he had done (fascinating, people) and gave us two prescriptions for two different eye drops.  She gets 9 eye drops a day and I thought there was no way I’d be able to remember all of them but apparently there is an app for that and thank you Smart Phone!

She was super tired yesterday and slept fairly well last night.  I slept okay, not as badly as I had anticipated, but I still have that headache that developed in pre-op and I am really, really tired.  Like bone tired.  Rabbit thinks it’s stress and tension and he is likely right.  I just need to relax or something.  Dr. Mickler said to have a beer but I’m nursing a 1 day post op baby so I don’t think that’s going to happen.

My very good friend, Carmen, had dropped off her delicious chili while we were at Lanie’s eye appointment and I realized I had not eaten all day.  Her chili is delicious and I am so blessed to know her so I can eat it.

The first half of today Lanie was kind of grumpy.  She’s never grumpy at all so it was different.  This afternoon, however, she’s been really cool.  She’s looking around, trying to see things.  She doesn’t have a lens in her eye yet so she can’t focus but she can see out of her left eye for the first time and everything is catching her attention.  I can’t even get her to look at the camera for long enough to snap a picture so this is all I’ve got for you right now.
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That is her expression all the time.

She won’t have her contacts or glasses for another month or two, after healing from both surgeries and giving her eyes time to adjust so Dr. Mickler can determine the best strength prescription for her. I really cannot wait for this.  I’m excited for that time when she can see our faces and our smiles clearly.

Now let us all pray that she doesn’t develop any other issues like glaucoma, which is very common after congenital cataract removal.

I’m going to go kiss my baby now.

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Filed under: congenital cataractsGod is.Lanie

Lanie update

Lanie did well. Her surgery was at 7am and we were home by around 9:30am. I did get a little nap and then Lanie had an eye appointment in the afternoon.

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Oh, and Dr. Mickler only removed the cataract from the left eye and her right eye will have to be done in a month or so.

I’ll update with more information later but it’s been a long, tired day and I’m going to try to get some sleep.

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Filed under: Uncategorized

A whirlwind of a week.

Just a quick update on Lanie’s cataract surgery.

And some fresh pictures to sweeten things up a bit.

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In the last week we’ve been given the awesome news that Lanie does not have Retinoblastoma.  Whew.  And her surgery has been scheduled for tomorrow morning.  Her surgery wasn’t supposed to be for another few weeks but an opportunity presented itself and her eye doctor asked and we said yes.

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So, tomorrow morning my sweet 7 week old baby girl will be under general anesthesia while she has both (hopefully) of her cataracts removed.

wp-1462489335055.jpgI’m feeling okay about this right now but I’m sure when it’s time to go to bed tonight everything will be different and I’ll likely not get much sleep at all.

It should be an outpatient procedure but because she’s so young she may have to stay overnight in the hospital for observation.  If this is the case I will stay with her in a room with a bed and a crib.wp-1462490144276.jpg

I’ll try to blog tomorrow and let everybody know how things went but I can’t promise anything.

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Filed under: congenital cataractsGod is.Lanie

We have some friends visiting from out of town this week.  He is a pilot who went through flight school with Rabbit and he’s here for some training thing.  He and his wife have the most adorable 5 children and so we set our rec room up as a sort of studio apartment so they had a comfortable place to stay while they are here.

I asked Matthew to please set up some pieces of our modular sofa into a double bed for the adults.  I said to put the pieces the long way to make the bed longer.  I guess he didn’t understand what I was saying because went I went out into the rec room to finish picking up a bit and to put some sheets on the couch-bed to find this:

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Apparently Matthew was expecting one very tall person.
I couldn’t stop laughing.  I showed Rabbit and he said, Well, you did tell him to set the pieces up with the long ends together.

Obviously this isn’t what I meant.

While I think the company that makes these is awful to deal with, our Sactional modular couch really is awesome because whether you have 12 people in your family, or you are 12 feet tall you can make yourself an appropriately sized couch or bed.

I need to change my header don’t I.

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Filed under: FunnyMatthew

wp-1461698692130.jpgLast week Lanie had the eye appointment I mentioned in an earlier post.  I had expected this to be one of those covering all your bases type appointments.  I honestly thought the eye doctor was going to tell me that my 5 weeks old’s tiny eyes looked great and all was well.

But, no.

Turns out that Lanie has fairly significant bilateral congenital cataracts (a clouding of the lens of the eye that is present at birth).  Dr. Mickler, her pediatric ophthalmologist, gave me a little eye lesson by letting me use his little eye light thing to look into her dilated eyes.  I was fascinated by the look of her eyes but that was quickly overshadowed by learning that my sweet newborn baby was going to need surgery on both of her eyes very soon.

First, she’s going to need an ultrasound to rule out retinoblastoma.  Yes, that’s cancer.  Yes, that is a very real possibility. Her doctor is pretty sure it’s just cataracts so I’m going with that for right now because this mama can’t take on any more stress.

After retinoblastoma is ruled out she’ll be scheduled for surgery.  This will happen sometime mid-May.  Cataracts should be removed as soon as possible to ensure that vision is clear enough to allow normal development of your baby’s vision system (thanks Google).  Optimal time for this is before 3 months old.  Dr. Mickler is hopeful that he’ll be able to do both eyes at one time.  He’s also confident that she will be able to come home the same day.

After her surgery Lanie will need to wear contacts or glasses until she’s grown enough to get her implants.  I’ve read that contacts are better for vision development but we’ll definitely take her eye doctor’s suggestions into consideration when it’s time to make that choice.  I don’t think it would be a problem to have both glasses and contacts available to us.

Surprisingly, I am doing okay with all this.  Not all that long ago babies with cataracts as dense as Lanie’s eye doctor thinks hers are eventually went blind, and it is very likely that Lanie cannot see much at all right now.  I can’t even say how huge a blessing it is that God gave us this man with the ability to give Lanie her sight.

The most difficult part of this whole thing for me, at least for right now, is knowing that my baby can’t see much.  It makes me so sad.  I know that it probably isn’t bothering her too much because she has no concept of sight and what she’s missing, but it still breaks my heart.

To end this post on the most adorable note ever, here is a video that Gabe took of Lanie a few days ago.

Totes adorbs, people.  Totes adorbs.

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Filed under: God is.Lanie

wpid-wp-1461085035265.jpgSorry it took me a couple of days to get this next Lanie post up.  She had a weigh-in yesterday morning and I wanted to wait until after that appointment to update you on her progress since being home from the hospital.  Then, yesterday, I had some painting to do and time got away from me.

She came home at 3 days old and her first appointment was at 6 days old.  That is how I’m breaking this down.  Days, then weeks, then months.

6 days old: Lanie’s first pediatric appointment. It was very quick with no poking, only a quick, non invasive test to check her bilirubin levels.  She was fine.

10 days old: Thyroid and chromosome test.  Stick as they may, the phlebotomists were unable to get enough blood for the chromosome test and, as we found out a few days later, they were also unable to test the thyroid sample. Lanie didn’t cry at all during all the poking.  She just looked annoyed and stared at me.

2 weeks old: Lanie was not as okay with this blood draw as she was with the last one.  She screamed.  It is the only time in her month of life that I have heard her scream since her birth.  They still didn’t get enough for the chromosome test but decided to send it in anyway.  Lanie is not gaining weight but Doc’s giving it another week to see if I can get some ounces on her. Heart murmur heard.   Lanie is being referred to a cardiologist.  This isn’t a surprise.  We knew she’d need another echocardiogram.  We also got referred to a pediatric ophthalmologist – that appointment is scheduled for the 20th.
She also started rolling over this week – from her front to her back.  She’s pretty good at lifting her head up and I’m not seeing any of the muscle tone issues in her neck we were warned to expect.

3 weeks old: Two appointments this week.  Her echocardiogram looked great.  There are two things that will be followed but she won’t need another appointment until she is a year old.  Doctor says the two things aren’t a big deal and will most likely never cause her any issues.
She has also begun to gain weight.  Still slow but Doc is going to give it two more weeks and see how she progresses before deciding to add fat to her milk.  Her right hip pops a little so a 6 week ultrasound on that hip will be necessary to make sure she doesn’t have any dysplasia.

1 month old: This was yesterday.  She is growing well.  Length and head growth are right on track.  She is still gaining weight but not quickly so it’s time to fortify my milk.  This requires pumping into bottles and then adding some formula and trying to feed this to her after nursing her as sort of a bonus meal.  Getting her to drink much from a bottle is hit and miss but I’m going to try.  Plus, it is a very small amount right now and her pediatrician thinks that this will be temporary. I’m not convinced Lanie needs this because the last week or so she’s been eating so much more than before. She’s awake more and much more alert and energetic and she definitely has more opinions.  I think she was just a week or two behind because, in my opinion, she wasn’t quite ready to be born yet. My water did break on its own but it was the polyhydramnios that caused this, not Lanie being ready.  I really think she would be progressing better had she been in the womb for two more weeks.  I’m predicting that at her next appointment in two weeks she’ll be right on target.  They also took more blood from her heel to do another thyroid test.  I’m hoping that all will be normal this time and she won’t need anymore pricking for a while.  I brought up transient leukemia and her pediatrician is going to look into this for me.  Lanie had many symptoms of this leading up to and just after birth.  It isn’t necessarily something to worry about right now, but it raises the risk of leukemia in early childhood so I would like it followed.

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Other things to note:  Her chromosome test came back “Consistent with complete T21”.  This isn’t as conclusive a result as we’d like and I’m wondering if it’s because the blood sample was so small. But it’s as good as we’re going to get right now so I’ll take it.  I’ll write more about this later but as of right now this isn’t our focus.  She’s hitting just about all the normal milestones for her age (except weight gain) so at this point we’re focusing on her potential medical issues, which time and time again are proving to be nothing.

I’ll have to write about some office practices in our area and whatnot.  Everybody has been so friendly, nurses and physicians both, but there are some things that bother me greatly and we’re still on the hunt for a good pediatric fit for our children.

I guess that’s a post for another day.

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Filed under: A Baby In ThereGod is.Lanie

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