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 This last week has been a little rough for me.  Let's back up to 3 weeks ago, when Ruby had her triple scope.  They recorded her for 24 hours to see how her little insides were doing with reflux.  She's been on Prevacid since birth, really and has had good/bad days.  She's on thickened formula and interestingly enough she doesn't spit up on the Enfamil, but does still on the Similac.  They are supposed to be exactly the same, but obviously are not.  So she didn't spit up at all in those 24 hours, and of course right before we are checked out, have a big spit up.  My thoughts were, "of course she spits up after the recording."  Well, I was too eager to prove something, I guess because Jessica from aerodigestive called last week to tell me that Ruby is actually refluxing all the time.  Silently.  Awful.  My poor little girl.  Who knows how uncomfortable that is?!
So because she basically has acid coming up into her throat all the time, the last two stitch repairs on her laryngeal cleft have not taken because the acid was probably eating away the sutures.  Sad!  Sad that we tried and tried and put her through the surgery and it was inevitably going to fail.  So now we need to get the acid under control so we can schedule another stitch repair...which means 24 hour feeds (G-tube), 24 hour feeds (GJ-tube) or a Nissen. None of those I want.  I hate 24 hour feeds for her and for me.  and I don't want her to go into surgery again to get a nissen!  Dr. Page said it will be for a few months, we can be really aggressive, so we can get her stitch fixed.  That is doable.  It'll be hard, but doable.   Of course I would rather be aggressive than be stagnant for who knows how long.  I am so ready to move on and get her eating by mouth!  I wish it were going to be as easy as just giving her a bottle, like at birth.  I know the feeding process will be a bit of a process also because she gets nothing by mouth.  Her tummy fills and she's good.  She is continually losing the desire to eat by mouth the longer we wait.

 

We also had an eye appt. that week of her scope and her pressure is low, which means the shunt is doing it's job, but her eye is super cloudy.  I have been able to tell there was something wrong for a bit of time and I asked the Dr. about it.  He didn't really give me an answer and led me to his assistant to make an appt. to look at it under anesthesia.  I was a little shocked and felt like he wasn't explaining things well to me, giving me any feedback.  His assistant seemed just as shocked and then played it off as routine.  I was a bit worried since that appt.  We got in two weeks later and found out that her cornea is, in fact,  cloudy.  He said he couldn't see through it, which probably means she can't see out of it.  He said there really isn't much he can do about that and we may need to see a cornea specialist and eventually do a cornea transplant.  In kids they want to wait as long as possible to do them because the chance of acceptance is slim. Ummmmmm.  Shock. I never even thought about her losing her eyesight permanently.  Holy reality check.  I have been bawling on and off since hearing this news.  I have asked questions on the FB pages I am on and haven't gotten positive news with those that have gone through this. I have researched it and they can do a plastic (K-pro), and there is a Dr. in New York that specializes in this in young kids.  I have heard that the risk of infection is higher in the plastic transplant.  So in a cadaver transplant, it's slim that the body will accept the new cornea (In adults it's a 95% acceptance rate.  Kids is 50%).  There aren't any more options.  It kills me that there aren't any more options.  MAKE ANOTHER OPTION!  SHE CAN NOT LOSE HER EYESIGHT!

 

Then I read this: 2 Nephi: 34-35.  The Lord knew what I needed.  He needs me to trust in Him.  I do, but our timing is very different, and that's the hard part.  But He needs me to completely trust Him.

I love my little Ruby girl.  There isn't anything I wouldn't do for her.  I can't imagine life without her snuggles and smiles. She is getting so much stronger and hasn't been sick for over a month now!  That is huge!  I can't believe the progress she's made  in this last month of being well.  We are working on her sitting up, and while she can't do it unassisted, she is content for more than 2 sec.  She's getting there and what a blessing it is to me to be able to be a part of it and to watch her accomplish all that she has accomplished.  She's my miracle baby.

Cardiologist, pulmonologist, opthamologist and triple scope...

In that order, all within a week! 

CARDIOLOGIST

We met a new cardiologist, Dr. Rob Puntel, who comes to Prescott once a month. It was nice not having to drive 1 1/2 hours for one appt. the appt. went really well. He did an echo and instead of having it done and reviewing it, he stood right there and showed me exactly what was going on. Ruby's ASD, (atrial septal defect or hole in her heart) was 7-8mm and is now 3-4mm. I pretty much teared up when he said that. It was the first time that after hearing a diagnosis it actually improved!  He said there was still a chance it could close up (best case scenario), but that it will never increase in size. He also said he wasn't concerned about closing it up at this point. He'll monitor her until about 8 and because she is female will close it up because later in life if she gets pregnant, the increase in blood flow can cause more blood clots and they can pass through that ASD and cause problems. 

He also said her tribeculations were really of no concern and we should follow up in 6 mos. she also has a small PDA (patent ductus arteriosus) which every baby has until a few days after birth. Ruby's didn't close and is so minimal that it was overlooked on her first 2 echos. The result of the opening mixes oxygen rich blood with oxygen poor blood causing strain on the heart and lungs. Hers is so minimal, it is not a concern and we are cleared for being put under anesthesia for the next 6 months.  

Such good things to hear. 

PULMONOLOGIST

We then saw Dr. Rao, our pulmonologist a few days later. Just a follow up, which went well. Ruby had just gotten over being sick and was on oxygen for 3 weeks and still sounded really congested, so she put her on an anti-inflammatory M-W-F for one month to calm down her airways. Orher than that, no big news on her end.

OPTHAMOLOGIST 

We have been going to Dr. Plotnick (Dr. O'niel's partner that specializes in glaucoma) every 2 weeks since she got her shunt put in in November. Her pressure has been 3 since a couple of weeks after surgery. While low, he never made it sound like a big deal and just ends with (it's about a 10 min. appt)

"Alright, well, I'd like to follow up and look now under anesthesia".  I am thinking, "huh?" He said it as if it's like another 10 min. appt. and as if there is so etching wrong that he needs to check because the pressure is low. He said he wants to make sure that all is well with the eye and if so, the pressure of 3 is ok for her.  If it's not, I don't know what...I feel like I left thinking what just happened here? It was such a surprise that he threw out anesthesia like it's no big deal. That's kind of a big deal to me and to Ruby, poor girl, who has gone under anesthesia at least 7 times now. Knowing that it's not the most fun thing in the world, my heart hurts to have it happen every time. So that will be in a couple of weeks. 

AERODIGESTIVE SCOPE

We have been so blessed to be able to be a part of this Aerodigestive group so that the ENT (Dr. Page), the pulmonologist (today it was Dr. Woodward) and the gastroenterologist (Dr. Ursea) can each do their scope one right after the other to determine what the next actions are. I don't know answers I was hoping for, well, yes I do. I was hoping that Dr. Page would tell us that her cleft was healed and that we could go home and throw the feeding tube/pump out the window. If only...

So each Dr. came out when they were done explaining their findings. Dr. Page was first. He said the cleft was still deep and the tissue around it didn't look healthy and pink like it should. Not something permanent, but something that we need to work on before more can be done. He also said that the left airway still seemed like it had something sitting on it, making it more constricted, causing her loud breathing. It's something that with time will get stronger and bigger and because she is holding her own on oxygen, there isn't a need to do drastic surgery to fix it. He also put tubes in her ears, which we knew would be coming...she still had fluid in her ears since birth and while it didn't ever cause an infection, it may have had an affect on her hearing. Now we will be able to hopefully take a successful hearing test (cross your fingers). 

Dr. Woodward was next and said she had a lot of congestion and secretions. He cleaned her out (which I can majorly tell as she is sleeping next to me SILENTLY sleeping). I asked him about deep auctioning on a regular basis (where they put a small suction tube up through the nose and down the throat). He said he doesn't love that because you are going in blind and have no way to know if there is any damage being done.  I asked him about something called thevest.com, that I read about on a laryngeal cleft Facebook page I am on. He said it would probably benefit her and he'd start working on the order right away. 

Dr. Ursea, looked throughout her stomach and could tell she has no allergies (which is great) and put in a probe testing her reflux issues. We are staying 24 hours and will log when she eats, sits up and lays down and has reflux. So far because she's been so tired from anesthesia, we have had no issues. Let's see how the next 18 hours go and that they can get a good idea of her reflux, where it comes from, where it goes and how acidic it is. 

I am so tired. It was an early morning this morning and I pray Ruby gets good sleep tonight for me. I don't love staying in the hospital and am so paranoid about being here during RSV season that I asked that everyone in the room gown up, wear gloves and masks so that there is less of a chance that she leave with a sickness. Let's hope that works and we stay well the rest of the season!

A few pictures from today's scope:

WE LOVE THIS LITTLE SWEETIE MORE THAN WE COULD EVER IMAGINE!!

Shunt surgery follow up

In less than 2 weeks my baby will be 9 months old!?! Where has the time gone? About 8 weeks ago was her shunt surgery on her left eye with glaucoma. It was explained that the shunt is put into the back of the eye and stitched closed with dissolvable stitches. Over the course of 6 weeks the stitches will dissolve and the pressure will gradually go down. If it's not regulated with stitches, her pressure will go from high pressure to no pressure and that's not good either. Before we went into surgery her eye had been pretty constantly in the high 20's. They want it between 6-11. Now after follow ups every 2 weeks, it's at a 3. The Dr. wasn't super worried about this pressure but said if it's still low after this next appt. he will want us to get an ultrasound of the back if the eye. He wants to make sure the shape is normal (not shallow). If that's the case she just may live with lower pressure and be fine. If the shape is off, her vision will be distorted. I don't know yet what that would bring.

It's really amazing to me after eye surgeries how well Ruby can see now. She has a droopy lid on that side that was really opening up more before surgery and now she hardly ever opens it. He said it will take a good 3 months before she may really try because she still may be able to feel the shunt in her eye. How annoying is that for her. Poor thing...I hate when I can feel something in my eye and she just has to get used to it. He didn't give us a prognosis on glasses yet. Once the pressure stabilizes we'll take the next step.

(Before surgery) 

(About 6 weeks post surgery)

Of course right after surgery, she picked something up and was sick for 1.5 weeks. Her getting sick is so hard. She's on o2 and it really takes it all out of her. 

She sleeps a lot when she's sick (which doesn't mean that I get more sleep) and we really have to keep up on suctioning out her congestion and keeping her breathing treatments every 4 hours. She also has to go to 24 hour feeds so that her stomach doesn't expand like with bolus feeds, otherwise she spits up so much there is a worry she could catch pneumonia or have a collapsed lung because of aspiration. We have avoided that so far!  We've gotten sick about once a month since winter started in November. We have gotten to stay out of the hospital, thank heavens, and I am hoping that will all slow down the older she gets and as the season moves to spring. 

As hard as this last year was and I was so eager to say goodbye, I wouldn't take it back for anything. This little love has blessed our home and family so much. We have seen SO many blessings/tender mercies in our lives and I know we will continue seeing them.  It is amazing to watch the innocent faith if our children as they specifically bless Ruby in every prayer we say. We have grown closer to our Heavenly Father through all of this and know that He is in charge no matter what. He knows Ruby and he knows us. I am thankful to know that He loves us individually and that he blesses us individually. I am also thankful that we have had so many opportunities for Ruby and that we live in the time we do where there are many modern miracles. 

She has a scope coming up in the end of January with her GI dr., ENT and pulmonologist. They will put her under and scope from her throat down to her legs to tell us our next steps. I am nervous/excited to move on from where we are at the moment. Nervous for more unknown, excited to get her closer to eating by mouth. I pray this year will bring good things and a little less adventure ;).

6 month update!

It's been one month since Ruby has had her G-tube put in. I can't even begin to explain how great this has been, especially now that we are back to 1 hour feeds. I didn't do the nissen...and am so happy with that decision.  I was SO, SO leery of having the g-tube done anyway.  It was really hard for me to approve having a hole cut in my baby's tummy. It's like having my baby's ears pierced. I just have a hard time CHOOSING to have something like that done. I know it's different, and there isnt anything wring with earrings, but when they are so little its hard for me to justify. Babies are so perfect straight from Heaven, and this was the first elective surgery she's had. But, like I said before, It's so great. Her little face is free and clear of tubes and tape and I can kiss it all I want!

She is becoming so much more active, compared to sleeping all the time. Her head control is getting better, she doesn't like tummy time because she has low upper tone, so she will keep her elbows up under chest for a minute, but doesn't like it, so she either rolls over on to her back or lays her head down to the side and puts her arms down to her sides. We are working with a physical therapist to get her stronger so she can play with toys. She found her hands and LOVES them! They are still opening up (she likes to clench them a lot) but she watches them ( one of my favorite firsts) and chews on them like crazy! The fact that she has two teeth helps too!

 We saw her eye dr. last week to see if the pressure in her left eye (glaucoma) has gone down and it hasn't. Boo. I am religious about the drops in that eye, but they haven't helped. It looks like she will have to get surgery to put a shunt in in the next couple of weeks. I am a bit emotional about this. It sounds easy and the dr. Makes it seem like it's not a big deal, but it's not always a "put a shunt in and you are good" thing. As I have learned with my Ruby, there can be complications to everything. They dr. explained that thee can be only 3 shunts put in per eye. Ever. So basically it's buying time. The shunt drains the fluid, much like a tube in an ear, except that the tube in an ear drains it out if the body. A shunt in the eye, drains it to another part of the eye. It can then form scar tissue causing the shunt to be less effective.  It could be 5-6 years, 13 years, or it could not work for her at all. Encouraging, eh?  I didn't think so either. But we don't really have a choice if we want her to develop better sight in that eye. If we don't do anything obviously her eyesight will eventually deteriorate.  The hope is that it all goes well and it drains the pressure and sustains itself for many, many years and there will never be another issue. MY hope is that I pray hard enough that the pressure miraculously goes away before surgery and they find that it doesn't have to be done.  I think my way is way more realistic :)

2 days post op

We are home! I can't believe how well Ruby did after surgery. She stayed off of oxygen and went right to sleeping on her tummy again. I was shocked. We even got back to bolus feeds in the hospital, which I wasn't planning on, so that has Been an even better transition. 

As soon as we put her in her own bed, she immediately relaxed as if an, "I'm home!" Was going to come out of her mouth.

We decided not to do the nissen fundoplication or the wrap around her tube to prevent her from spitting up. When things are going well, she doesn't spit up that much and I didn't feel comfortable doing it "just in case". The GI surgeon said we could always go back in a few weeks if we need to add it, but she has done such a great job, with such few spit ups, I am hopeful we won't need it.

It's so great to see her sweet little face without tubes being taped to her cheeks! As hard as this surgery was for me, I can already see the positive side of things.

Gtube day

I just turned over my sweet little sleeping babe to the nurse for her gtube surgery. This was the hardest surgery yet for me. All the others have been easier because I knew she needed it to progress and develop. This time, I feel like I don't HAVE  to do it. I know we need to clear her throat out and let her cleft heal, but because we are electing to have a hole cut into her stomach, it's tearing me apart. 

The downward slope

After finally seeing a pulmonologist and getting her involved, we detected that Ruby's 24 hour cough was from the NJ tube irritating her throat. We use a 5 French NG tube, but an NJ tube only comes in an 8 and it was just too big for her little airways. I feel so bad that it took a week to figure that out!! Since that has been changed, she has weened off of her oxygen also. She's congested still, but doesn't lose oxygen while coughing anymore.

The pulmonologist wants us to have her sleep (prone) on her tummy, and said while they say not to, it is actually safer for some babies. Ruby loves it and it prevents her from coughing and/or choking while congested. I can't believe what a difference it makes.

She still isn't great at moving her head from side to side yet, but just being on her tummy for naps has made it a bit stronger. 

I can't wait to get home now and be in a routine, even if it is a difficult one, and make my own dinner and get the kids off to school, and exercise, and sleep in a bed...it looks like tomorrow afternoon at the latest, unless there is some sort of slip up!