Baby steps

It's 3 am and I sit here holding my sweet Ruby as she tries so desperately to take a breath without following it up with a cough at the end. I am balancing holding in her pacifier and the blow by oxygen mask so she'll calm down.

 It's Monday morning and I should be driving carpool this week, but instead I sit here in my recliner/bed that I have had for almost a week now. I can't help but wonder what happened? How on earth did Ruby get sick, when no one at home was sick. Is this my warning about how things are going to be with RSV season? Heaven help me through the rest of this year if she stays at least a week in the hospital for a cold (if that's all it is...there are no conclusions at this point). 

I thought we may be going home today, but she keeps destatting when she has her coughing fits and that seems to be getting worse.  So here we stay.

When I hold her she sleeps...without coughing.  Nurses are shocked its the same baby.  This reason alone is one reason I am grateful I can stay with her in the hospital. She knows me. If anything I can comfort her and hold her as much as she wants...even if it's at an exhausting hour.

Our ward and family fasted for her yesterday. I can't tell you how humbling it is for so many people to sacrifice something on the behalf of our baby girl. We feel the prayers and the blessings. As hard as it is to feel like the ups and downs are more downs than ups, I know Heavenly Father knows Ruby individually. He knows me individually, and He has blessed us in so many ways. Life really is all about the tender mercies. So as I sit here, not able to get a good nights rest, I am going to be grateful for the bond that Ruby and I are getting while I get to hold her in the hospital and she has my full attention.

PCH

I ended up taking Ruby to the PCH ER on Tuesday morning even though I was really trying to avoid it. Our sweet neonatologist (now friend) met us there to give me moral support.  Thank heavens. She's such a great person, i am very grateful for her and all she's done for us. They ended up admitting Ruby on Tuesday afternoon.

At first we thought it all had to do with her heart and it was working overtime and wearing her out. Then we got a second opinion by another cardiologist who said it didn't look like the ASD (hole) was as big as I was told and the thickening of the ventricle wasn't a thickening at all, but trebeculations in the lower left ventricle. We heard this in the NICU, but no one seemed too alarmed by it so it was really put on the back burner and we were just told to follow up. It wasn't until we talked to the cardiologist here at PCH that he told us what that meant. It is in fact tied to cardiomyopathy, which is horrible, worst case scenario. I immediately started crying when i heard him say the "muscles may stop working over time" and "possible heart transplant". Best case scenario her trebeculations don't get enlarged and don't bother her for the rest of her life. There is no telling what will happen with Ruby's body especially because there is not a syndrome tied to her. So we just have to wait and see...and obviously pray for the best. This does mean that there is nothing emergent going on with her heart at the moment, which is good.

Since we got here she's had a fever and a horrible cough and has been spitting up like crazy. Her feeds were moved to 24 hour feeds but she was still spitting up, so they then cut them in 1/2 and she still spit up. As of now they have been stopped, but today they are going to put in an NJ tube, which will go directly into her small intestine vs. the stomach so there isn't any spitting up. 24 hour feeds are a must in this case because the small intestine can not expand like the stomach to hold larger amounts of food. I don't love 24 hour feeds after getting home. They are such a pain with 3 other kids schedules and getting her away from her bed for stimulation. Who wants to pack up milk every time they walk into another room with the baby. I really hope that it's a short term thing like planned until she can tolerate foods...and until we can get the GTube.

We will be here at least through Monday maybe longer depending on the toleration of feeds and if her GTube surgery gets scheduled earlier. They had talked about putting it in while we are in the hospital. 

My poor Ruby. She's been so uncomfortable. It's awful that I am helpless. She has an IV on her head. I have heard that that's a great place for babies, but it's not my favorite. I have to be super careful holding her and I have already pulled it out once. On top of it all I got sick too, so I am doped up on Tylenol cold and flu, and trying to hold Ruby and just get her comfortable. It's really a walk in the park, let me tell you. 

She's such a little trooper. I would trade her places in a heartbeat if I could. I hate seeing my baby in pain.

G-tube update and ER trip

Last week we had an appointment to meet with the pediatric surgeon to put in Ruby's GTube. We've had this appointment set for a month, and I even tried to move it up knowing it is what Ruby needs so we can let her throat heal and be able to move forward. Wednesday came and I was so nervous. Yes, it's another surgery, but I feel like at the beginning of Ruby's life there were big things happening to help her eat by mouth. Even though she failed, we were trying. I guess I feel that once we get the GTube, things will stand still and the effort to get her to eat by mouth will disappear. That's my worst nightmare.I don't want my daughter to have to eat through a tube for the rest of her life. I know I am out of control, and I think that's what is hard. I can't help but jump forward years from now and think of her at the movies and not able to eat popcorn with her friends. They say, one day at a time, but I also think about the future...I am her Mom. I think about all of my kids and their future.

So we met with the Dr., who was highly recommended by people and she was super confident about things. She explained that it is like a beach ball opening with a little balloon inside, and we hook up feeds just like we are doing now. Ruby will be able to take baths the same and swim the same with no worry. She said its a temporary fix and we will be working with a speech pathologist  or feeding therapist to hopefully work Ruby into eating by mouth. She also said, everyone always wondered why they waited to get the GTube, that it was easier/better than they thought it would be. That was reassuring, it something we know we need to do, so we scheduled surgery for September 3rd at 9 am.

Before her cataract surgeries, Ruby had to be cleared by her cardiologist for surgery because she has a hole in her heart.  We learned this in the NICU, but it was always on the back burner because there were so any other things to concentrate on. We went to a follow up appt. in July, and her cleared her for her cataract surgeries. He said the hole was bigger than it should be, but we just will follow up in 3 months and make sure it's not getting bigger.

Fast forward 3 days. Nathan took the 3 other kids up north on Friday with my dad and cousins while I stayed home with Ruby. My mom decided to keep me company and stay over with us. I woke up to Ruby crying at 4:30 am. She felt very warm and was struggling breathing. Her fever was 101.1, so I gave her Tylenol and a breathing treatment with saline. After deciding that we need to take her to a dr... there is nothing open on Saturday morning. The late night peds urgent care closed at 5am and the regular peds urgent care opens at noon on Saturdays. So we took her to the ER and spent 8 hours there! They took chest X-rays and found her with clear lungs and no aspiration. Her oxygen level was 100%, which is fantastic. She didn't have a UTI (checked because of her fever). But the dr. In the ER was concerned about her heart. She said it looked vastly different than the X-ray taken when she was at the NICU and that we need to see our cardiologist as soon as we can. They sent us home and Ruby was pretty stable for the rest of the weekend. Still had the yucky cough, but otherwise was content.

                                     

 I called Monday on our way to see the eye Dr. (Ruby doesn't need glasses yet, yay!!!) and they could squeeze me in at 1.  They take another echocardiogram and tell me that the hole in her heart is 3mm larger than it was 3 weeks ago! 3mm!! Then he says that the lower left ventricle that had a thickened wall is 25% thicker. He starts talking about a syndrome called noonan's and cardiomyopathy and as he is saying those words I am bawling.  I cant get past his definition, heart-muscle-disease.This is the one thing they found on her that was supposed to be just  follow up and was always on the back burner. Now it's not and I really am not ok with it. My baby has enough going on, really her heart, too? Which in turn equals my heart too, because mine is breaking.

Cataracts round 2

After the first surgery, we were so excited to get the second eye done so that Ruby could finally see us!  It's amazing how, even though this is surgery and it's on her eyes, that it seems like no big deal compared to everything else we have been through so far.  It seems like such an easy fix.  We patched Ruby's eye for 5 days and then went in on Wednesday for the right eye.  The right eye was just as great of a surgery as the last.  We had the same anesthesiologist that knew Ruby, which was a good thing. 

When we got  to see her, she was hysterical.  They gave her some Demerol to calm her down (which worked wonders) so she could sleep and feel more comfortable.  She ended up sleeping the rest of the day.  Our Dr. told us that the left eye, even though there were no complications in surgery, had  a lot of pressure behind it, which could develop into glaucoma. I noticed some smogginess to the eye, but also didn't know enough to know it wasn't going to clear up on its own.  He gave us some drops to use (indefinitely), along with all the drops we need to put into her eyes after surgery (holy moly there are a lot) and we need to have the pressure checked on in a month.  Glaucoma occurs in about 50% of kids with congenital cataracts.  I was a super bummed with that news, but am surprised out how common it is for kids with cataracts. It wasn't the easy fix I was looking for.  We have since been back and the right eye is healing well.  We went in on Monday for a follow up and he wanted to see her prescription for glasses, but it was just too soon.  We'll go back in a couple of weeks for that. 

The other morning I was really concerned that Ruby wasn't opening her eyes.  When we went in for the first follow up on the left eye, the Dr. had said that is one of the things he looks for.  I swear, Ruby didn't open her eyes for 12 hours straight.  She finally did, after I said a little prayer asking for the tender mercy I needed to know that something was going right.  I asked him about this and he said, after surgery, their eyes are super sensitive to light...especially the one with the glaucoma.  That makes it even more sensitive.  After noticing, her left eye (with the glaucoma) has a larger pupil than the right...obviously letting in more light.  I wonder if using the drops for a period of time will reduce the size of that.  Also at the appt. the pharmacy called me as I was walking out of the office because they were confused on the drops medications for her eye.  As I was telling the pharmacist that she had surgery on both eyes at separate times, a woman (maybe in her 70's) interrupts me on the phone and says, "did you just say that this baby had cataract surgery!?"  I said yes, and she just said, "OH MY!" and got in the elevator and left! 

Through it all, Ruby is so strong.  She is one tough little girl, who HATES lots of eye drops.  It starts out great and goes downhill from there. I can get the first two in and then she clenches her little eyelids as hard as she possibly can to try to prevent me from getting any more in.  It's kind of funny...but breaks my heart that after all that she has been through, she is starting to realize that this stinks!  I love her so much.  As hard as life is right now, trying to manage time/schedules I couldn't imagine her not in our family.  And I do know, she is going to be the cutest little thing in glasses!  Our neighbor, who is 6 was telling her mom how unfair it was that Ruby was getting glasses...not because she is a baby, but because she is only a baby, and she was 6 and didn't even get to wear glasses yet!  Adorable.

Next week, we see the GI surgeon about a G-tube.  I am a bit nervous for that.  Every time I sit and think about actually doing it, I kind of cringe.  I know it needs to be done, I just wish I knew how long.  I guess it is fairly common among the laryngeal cleft (LC) world that the surgeries to stitch the cleft don't take.  They get better each time and as the child grows, but it is a constant work in progress that doesn't really have a miracle fix.  I am grateful she is gaining weight and growing so much, because that is one of the downfalls of the cleft. I just worry that so much time will pass without her being able to eat by mouth that she will be afraid when/if she'll finally be able to.

This summer was spent going to different Dr.'s 3x a week.  School started this week and we only have 1 appt. and then only 2 next week....so nice to slow that down a bit.  I am hoping with the eyes done and once the g-tube is in, that we'll be able to relax and be normal. :)