Cataracts round 1

Ruby's 1st cataract surgery went so much better than we expected!  We met with the surgeon on Tuesday to discuss the details and decided because of her past with her laryngeal cleft surgeries and her tracheomalacia, he would do it at PCH instead of the surgery center just in case there were problems and she needed to spend the night.  I had a bag packed and assumed we would be getting a room, but because they weren't operating on her throat, she did amazing.  No problems whatsoever!  We got to come home about an hour after she got out of surgery.  We were so shocked, it almost didn't seem real.

 

We were scheduled to check in at 6 AM with about an 1.5 hour surgery at 7:30.  On Tuesday, we went into our consultation with no intention of having an IOL (intraocular lens or permanent lens) put into place replacing the lens with the cataract he was taking out.  I read a lot on them and decided it would be better after she were a bit older and her eye was fully grown (maybe reading or school age).  With that said, we would have to have super thick lenses in her glasses and/or contact lenses.  The thought of putting contact lenses in my baby and keeping track of them seemed like a nightmare to me.  I have never worn glasses or lenses, so it is all foreign to me.  I tried in college for 2 hours to get a pair of colored non-prescription lenses in my eye, without success.  That flashback went through my mind and I didn't think I'd be able to do it....but I would figure it out, just like I did the NG tube.  So at the appt.  his assistant asked why we weren't doing permanent lenses.  She said if her child had to have the surgery, there is no doubt she'd get permanent lenses.  Dr. O'Neil is one of the only surgeons that will do them in babies.  After discussing it, we decided to do them, if she did well in surgery.  Dr. O'Neil said if there was any issue with her breathing he would not put them in.  She did great, so he put the first one in. Ruby will still wear glasses because he under corrects the lens so that her eye has room to grow and develop, but it's hard to predict and be exact...but her glasses will be a slight prescription vs. super thick lenses. 

 

I can't believe how easy the recovery has been also.  NOTHING like the laryngeal cleft.  Ruby hasn't been uncomfortable at all.  We have to do a million and a half drops a day and she wears a little metal patch while we aren't holding her, but that is it.  When the patch is off, she'll open her eye a bit, not as easily or as much as the right, but I am guessing that will change.

 

Next Wednesday is her right eye....let's pray for the same recovery!  Then it's time to pick out some frames.  As excited as I am to have these surgeries done and to get her glasses so that she can see...I am searching on line for cute frames for a 3 month old.  Not very many choices...So many cute ones for older toddlers/kids...but infants, bleh!  I am going to need some help with that!

 

 

 Daddy giving a little pep talk before surgery.

 Just got home and slept all day!

 1st smiles the next morning!

Henry insists on holding Ruby more often than not. "I HODE WOOBY!!"

The last two weeks were rough.  First, because we got home from the hospital on June 30 from Ruby's second surgery.  I don't know that I expected her to be as uncomfortable as she was the week after surgery.  The first surgery in the NICU wasn't nearly as bad, but I am assuming it's because pain is monitored more closely there and she had stronger medication.  She got a fever the first two days coming home and then was coughing so much that it would make her cry, night and day.  Last week we then had her follow-up swallow study to see how this surgery took.  Dr. Page wanted it sooner than later because of how the cleft fell apart the first time.  I was so nervous...because what was the solution if she couldn't drink this time?  We can't keep sending her to the OR to get stiched up, then keep having a swallow study.  I knew it was something I didn't want: a Gastrostomy Tube (tube surgically placed her side that will go straight to her stomach to deliver nutrition) :( It's not a fun decision, but we really think she needs to be able to heal in her throat and having a tube that is rubbing along the suture and causing swelling isn't helping her at all.
This time in her swallow study they started with the thickness of honey and then moved to double honey, which still moved into her lungs.  They aren't certain about how it's getting in there, but after the follow up with Dr. Page, he needs to see her again in the OR to check things out.  We have an upper GI test this next Wednesday to figure out if there are any problems other than the laryngeal cleft, then we'll see a GI specialist to discuss the details of the G tube.
Dr. Page is also thinking he wants to drain her ears and put tubes in.  It will be nice to know that that will be taken care of and we don't have to wonder so much about hearing (hopefully). He said he normally wouldn't worry about it so much, but because of her cataracts, he wants to get it taken care of so she doesn't fall behind developmentally.

We also had an eye appt. the day after her swallow, to check on her cataracts.  He said her left eye is worse than the right (which I could tell), and that she needs to get surgery right away, otherwise the brain starts to shut off working so hard to see clearly and more permanent damage is done.  Her 1st eye surgery is this next Thursday the 25th. They do one eye at a time about a week apart to make sure everything goes ok and she doesn't develop any infection.  We haven't met with the ophthalmologist to discuss details yet, but I am really nervous for this surgery.  It kills me that she is having to go through all of this.  I think when her first surgery in the NICU came, I was a bit relieved in the fact that I thought it would all be over and we could go home afterwards.  Now that I have her home and she is growing and getting so big and as I get to know her more and her likes and dislikes, it breaks my heart knowing she has to go through so many more surgeries and follow with hard weeks like that last one home from surgery; knowing she is going to be uncomfortable for days and I can't take it away, is the hardest part of being a mom.  She's my beautiful baby, and you look at her and don't know anything is wrong, and then I think about her insides and how I wish with all my heart I could fix things so she wouldn't have to go through any of this.  This road to recovery is harder than I ever could have imagined.

We have had a genetesist appointment scheduled since we got out of the hospital that we went to about a week ago.  They schedule out 2-3 months in advance. It was by far the most in depth appt. we had because I had to get copies of pictures of our little family, us as babies and pictures of our parents for their file and fill out a family history questionnaire.  The meeting was a joke.  The genetesist answered her cell phone twice in the appt. that we waited an hour for in the waiting room.  She had nothing to say, except that she wasn't for sure on any diagnosis and would have to do more research. Then I handed her all of the pictures I brought and she kept commenting on how cute our family was and how sweet it was to bring in family pictures.  Then she handed them back to me and said, "thanks so much, it's fun to see your family."  What?  So basically the appt. was pointless, and she said if you don't hear anything from me by August feel free to email me.  Ya, no thanks.   I wasn't convinced I wanted to go to a genetesist anyway and put a label on Ruby.  I know a lot of people say it will be good for the future and going forward, knowing what to expect...but I don't know that I care right now.  It's not changing what we are doing for her.

There has been the question of Opitz g/bbb syndrome, but nothing conclusive.  It would be a very rare case because it is primarily in males because it is linked to the X chromosome.  She doesn't fit all of the profile and there was a basic chromosome test done in the hospital that came back without any abnormalities.  I am fine without having anything to pin this to.

After we got home things were good. and hard.  Ruby sleeps A LOT...but when she's awake she is a little fussy and uncomfortable.  And I am pumping.  And I have 3 other kids at home 6,5, and 2...and they need to leave the house sometimes, and Ruby can't.  Dr. Allare stressed to me that my lifestyle is going to change.  Ruby won't be going to the library, or the mall or the science center, or the grocery store or to church.  They said for 6 months...and then changed it to a year with RSV season coming after that 6 months.   Thank goodness for family...and thank goodness my kids just love having Ruby home.  My mom and mother-in-law have been a HUGE help.  They switch off every other day coming and helping me with my kids and the house and my sanity.  I also have the best friends that are willing to take my kids to play and to swim.

I think since we have been home I have had almost all of our appts. that were set up in the hospital and then some.  We have been to all of our follow ups and had initial therapy visits in our house.  It's all a bit overwhelming and sometimes drives me insane that the only places I feel like I go are to Dr. appts.  I kind of thought we'd get home and go to these follow up appts. and that would really be the end of it.  Then we'd occasionally see them again for future follow ups...I was wrong.  It seems like there is always something coming up and always something that changes or needs to be looked at again...

Ruby had her 1st swallow test since surgery scheduled on June 19th.  We thought for sure this was our ticket.  She'd show us how great the surgery healed and we'd get to feed her and wean off of the feeding tube.  We were so hopeful, and she failed. They started with the thickness of honey and were going to work their way down, but she didn't even make it past that one.  Back to square one.  That was a rough day.  I felt like we had come so far in 6 weeks....and then it all changed in a matter of minutes.

Dr. Page called and wanted to get her in the next week to look at the suture.  He took her in on June 28th.  We knew we'd be staying overnight because they had to put her under anesthesia again.  That always makes me nervous...but we needed to see what was going on.  We waited in the waiting room for what seemed like too long.  This was longer than the last surgery.  He finally came out a told us that it was as if he had never done the first surgery and they had a hard time getting her to breathe on her own under the anesthesia.  The picture he showed us of her cleft looked exactly like the "before" picture of the 1st surgery.  WHAT?!  He was as confused as we were.  Something obviously went wrong and everything came undone.  He stitched it back up and is hoping for better luck this time. 

We ended up staying two nights in the hospital because Ruby was on oxygen and her levels were not as high as they wanted them.  She was really uncomfortable and had a terrible cough all night after surgery...and pretty much the next week after we got home.