Update

It looks like we'll be getting out of the hospital soon...it's looking like tomorrow (fingers crossed).  Ruby has held her o2 level and progressed so amazingly well this last week. I have had a few nurses/residents come check on her and they are all so amazed at her progression. Such a blessing. I can't express how grateful we are for the prayers and well wishes. We know they make a difference! I know I say it over and over again, but it's true. 

                       

The concern about her heart is gone. Amazing. We did an echo the day after Dr. Rao came and talked to us, he came back and said her echo showed no sign of pulmonary hypertension! I was so happy. I spent the night before devastated because I thought her heart was now going to be such an issue and affect so many things and I am so grateful I don't have to worry about it at this point. 

She got her GJ tube replaced twice since it was first put in last Friday. We had such a nightmare with two of them that we had to go up a size on the 3rd go round and it's worked. It does leak a bit when both the g tube and the j tube are clamped, but nothing compared to the green bilious that was pouring out before. 

Ruby was also projectile vomiting this green bilious. It was SLIGHTLY alarming. It turns out that her body produces too much right now and doesn't seem to empty completely. So while her tummy was filling with food (when she was g tube fed) it was formula coming up, but now that her food is going into the small intestine, it's filling with just bilious, which is still upsetting to her system. Therefore, she'd have massive spit ups. I was so paranoid that she'd aspirated and we'd get bacterial pneumonia again before even getting out of the hospital. 

We started to "vent" her tube or drain it. So she is being fed with the j tube, the g tube, from the same port is hooked up to a different tube that drains into a diaper that is tightly wrapped around it. It's a little crazy how much drainage is in there, that has nothing to do with the food she's getting. She seems to be putting out too much, therefore her weight and nutrition is a concern.  The other night her heart rate went up quite a bit (170's. She's normally around 115) and she got a slight fever. I panicked. I thought," please don't let this whole process start over again." That was why we went to the hospital before...because of her high heart rate (200's) and her little body gave out. I had horrible flashbacks and couldn't get take my eyes off the heart rate monitor. Turns out she was dehydrated because she's draining too much from her tummy.  They don't know why this happens but give the answer that every child has a different reaction to the GJ tube. So they gave her IV fluids to conpensate, which immediately brought her fever down and her heart rate down. They also discovered that if they compensate her nutrition by adding pediatyle in the amount she outputs from her tummy, she'll stay hydrated without relying on IV's of fluids. Which means we can do all of this at home. Not that I want to.  The thought of having a drainage tube hanging from her all the time, is less than ideal.  I had a whole pity party last night and was bawling that I can't possibly take on any more when I get home. But just like everything else...it's learning step by step. It's not going to be easy to take her anywhere with a feeding pump and a drainage tube and 3 other kids, one of which doesn't want to hold your hand in the street or parking lot because he thinks he is big. But I can do hard things and I can figure it out...maybe crying intermittently, but I can do it. 

I watched this talk and loved it, but honestly thought, "why the heck does my burden have to be SO heavy?" I know, lots of people have it harder. But I sometimes don't think I can possibly handle any more.

https://www.lds.org/general-conference/2014/04/bear-up-their-burdens-with-ease?lang=eng#watch=video

But as my Dad reminded me...3 weeks ago I was pleading for her life. Begging and pleading. Prayers have been answered and now she's back and happy. I am thankful she's back. I can and will do anything for my dear Ruby girl...even if it's hard and I am feeling weak. 

                               

                               

                               

                               

Easter Sunday

We are still here in the hospital, and although it was Easter, it really doesn't feel like it is when your family is split in different directions. We have been blessed with so many prayers, by those we know ans those we don't know. Ruby has progressed so much in the last two weeks! She is off her oxygen now, and IR put in her GJ tube, which I honestly haven't fallen in love with. It's bulkier, she's got major gas and she hasn't stopped spitting up (which is the entire reason we did it) and it's leaking like crazy. She's happy regardless, but tomorrow we have to send her to IR again to have it replaced because it looks like there is a small leak in the balloon somewhere. And we have to talk to GI to figure out the spit up. So until those are figured out we probably won't leave the ICU.

We spent her 1st birthday at her bedside! She couldn't leave, so we brought the party to her! We ordered cupcakes for the nurses and brought in balloons and presents! She wasn't super happy that day, unfortunately, so smiles were scarce, but she's so content, and such a love.

                     

There is still some concern about her heart. The dr.'s called in a specialist from cardiology on pulmonary hypertension. I made the mistake of googling that. It's a bit scary. Dr. Rao (our pulmonologists husband) is so nice and came to chat with us for a while about it. He said IF she has it, it's type 3, which is temporary, which means it's going on while she is sick. He said the ASD she has is working to her benefit because it's pushing more blood through. Pulmonary hypertension prevents the right side of the heart from working well. It narrows the arteries in the lungs causing high blood pressure and less blood flow. It's not great. He said he wants to do another echocardiogram while we are here and then he wants us to get one in Prescott when she is well and because of the elevation change. He then will see exactly what's going on and determine if we need to be part of his pulmonary hypertension clinic. As much as I liked him, we are hoping for a big fat NO on that. 

He said either way, we are for sure to use only cardiac anesthesiologists to prevent any issues. It also looks like our cleft repair won't be happening for another 8-12 weeks because of her o2 issues. Which I am fine with. I don't want to take any chances either. 

It's so hard when things start to get better, having more problems in areas you didn't think were a problem, or they haven't been in the past even though the possibility could be there. I really just want her little body healed and for all of the parts to work together for good vs. bad. I look at my other kids and think of really how amazing our bodies are, for everything to work together so easily and to have never had to deal with any major health issues. 

I was reading a book by Maya Angelou, a friend brought me and this little poem hit a tender spot in my heart for my sweet Ruby:

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

I just want my baby to be the free bird we all are. I want her to run and play and jump and see everything she can see and do everything she can dream of doing. I want her to go to the movies with friends and eat popcorn out of her mouth and hike a mountain with a healthy pair of lungs.  Things that intake advantage of.  I want her to love life and understand heartbreak and joy. 

I know regardless, she'll love life. She already does. She'll teach the world of happiness and joy whatever her circumstances and she'll be loved by everyone she comes in contact with. 

Who can't love this beautiful, happy face?!?

                                 

                                 

Pneumonia and the rhinovirus

I was so happy that we had gone MONTHS without being sick in the hospital.  Last July, really.  Ruby has gotten sick, but we've been able to battle it at home since we have oxygen and an oximeter which monitors her oxygen and heart rate.
She even got pneumonia in February that we battled out over a week (which was fast for us!)

This last Sunday it all changed.  Ruby started to get grumpy Saturday night when I went to bathe her, which is unusual.  She is the happiest baby, so I knew something was coming.  Later she got a fever which usually always results in her having to have O2.  We ended up putting her on O2 and trying to get her to sleep.  She wouldn't stop screaming.  I knew it was pneumonia.  It is painful and she screams like that for hours vs. just weak and wanting to sleep like when she has a virus.  We tried all night to get her comfortable, but her heart rate wouldn't drop below 200 (normal is 120's), this was the kicker.  We knew we needed to get her into the hospital.  We took her to Prescott Valley (they treat more kids there), with the intent for them to get us to Phoenix Children's.  We went by ambulance, but looking back should have gone by helicopter.

We were met by my parents and brothers who stepped in to give Ruby and me a blessing.  So grateful they were willing to come down and do that for us.  Nate was with the kids in Prescott still packing them up to spend the weekend down here.

Shortly after getting there, her little body was giving out and couldn't take it anymore.  They whisked her off to hook her up to the ventilator to do all the breathing for her.  I was frantic.  Nate was driving the other kids down and hadn't gotten there yet.  Thank goodness my brother, Nick was still there so I could send him in to make sure she was ok, because I can't watch.  The hardest thing in the world is to watch your little lifeless babe in someone elses hands.  They saved her life.

We were moved into a room at the PICU and we were both so tired.  I thought for sure we would have a quiet night.  She was sedated and can't do much.  I woke up at 2 am to nurses and dr.'s surrounding her bedside.  I asked what was going on and her little body was giving out again.  She couldn't even handle the ventilator.  I had no idea there was another option, really.  They moved her to an oscillator, which not only breathes for you but pushes about 360 breaths/minute (they can adjust this #) into her lungs to keep the open so they don't have a chance of closing and giving up.

I again, couldn't watch all that was going on.  They had to do so much more to her to get this to work including put a catheter in her and other lines. This is much more complicated than a ventilator and there are so many more numbers to watch.

They escorted me out to the waiting room and I decided to read my scriptures to get my mind off of it.  I read Mosiah 3 and the two verses 4 and 5 were just what I needed to read at that moment.

 4 For the Lord hath heard thy prayers, and hath judged of thy^arighteousness, and hath sent me to declare unto thee that thou mayest rejoice; and that thou mayest declare unto thy people, that they may also be filled with joy.

 5 For behold, the time cometh, and is not far distant, that with power, the ^aLord ^bOmnipotent who ^creigneth, who was, and is from all ^deternity to all eternity, shall come down from heaven among the children of men, and shall dwell in a ^etabernacle of clay, and shall go forth amongst men, working mighty ^fmiracles, such as healing the sick, raising the dead, causing the lame to walk, the ^gblind to receive their sight, and the deaf to hear, and curing all manner of diseases.

It took so long...that I also watched this talk by Dieter F. Uchtdorf:

https://www.lds.org/general-conference/2014/04/grateful-in-any-circumstances?lang=eng

Both of these things could not be by chance.  I believe in tender mercies.  I had no idea what talk would come up from conference and this is just what I needed.  I came back into the room SO grateful for the dr.'s and nurses that were able to be there at the right moment to save my baby's life.  I was so grateful for the medical technology available to keep her here with us.  I have since looked at this stay at the hospital so differently and once again have had my testimony strengthened that the Lord does really know each of us individually.

Back to the oscillator:
Ruby also had to be paralyzed AND sedated on this machine.  She could not wake up...if she did, she would try to breathe and fight with the machine which could have shut it off because it wouldn't work right. That was scary to watch.  As much as I wanted her awake with me, I want her comfortable and she was anything but. Her coloring was also so pale. It was really hard to look at her without bawling my eyes out.

That morning the Dr. also came in saying she really needed a blood transfusion.  I was already scared, but this put me over the edge.  She said I had two hours to decide and if we decided against it, she wasn't really going to progress.  Wow.  So I guess it wasn't really a decision when it was put that way.  Scary as it was signing the form warning you against hepatitis and AIDS.  I immediately thought of that talk and thought..."why would I not do what it takes to save my baby's life?"  I take those chances or she goes downhill.  I am grateful for the blood transfusion, it really helped.  The dr.'s could see a difference immediately.  It's just scary as a mom, not living in the medical world having to make immediate decisions.  I am a researcher and I want to know all of my options.  But when you don't have any...you just pray! Thank goodness after the blood transfusion she really got her color back.  She has been really puffy and retaining fluid. It looks so painful in her legs and feet. I just try to rub them thinking that's what I would want.

I really can't believe how many IV lines she had running to her. There is a tower to hold 8 different meds or vitamins or whatevers and she was using all 8 in the beginning. Now she's down to 4. 

These are the machines she is hooked up to after the oscillator left the room. That machine was so loud. It was like having a big air conditioner in the room that was blowing to a beat of 360 breaths/min.
She was on the oscillator for 4 days.  It's a tricky machine.  There are so many different things to watch for and adjust...it's WAY over my "NICU experience" knowledge.  She just switched back to the ventilator...so we are making progress!  It is so amazing to see her little eyes open.  It has been a long week without seeing her big eyes and little legs kicking. 

You can see her eyes open for the first time after the paralysis med stopped. So sweet and so puffy. She even tried to smile, Little Love.

Here, the next morning her eyes are SO MUCH LESS PUFFY!!

She started respiratory treatment with "the vest" (I tried to do a link, but my computer was acting funny on that website).  Basically its a lung shaker.  It shakes the gunk out of the lungs and then they suction it all out.  Crazy as it sounds it totally relaxes her and she sleeps during it. 

She is also on antibiotics, albuterol and a salt water inhalent to moisten the secretions in the lungs.

Little Love loves her tummy!! But tried to turn her head with that intubation tube in her mouth and that CANT happen. Poor thing. I'd want to turn my head too!

While she has been making progress, her lungs are still really, really infected.  She gets an X-ray every morning and yesterday's was actually more clear than today's.  There isn't really a clear answer on that at all except that she was on the oscillator yesterday, so maybe it had to do with the machine keeping her lungs open.

It looks like we have a bit of a road in front of us.  A week or so on the ventilator, then nasal cannula, then she'll move from the ICU to the floor and be monitored there.  It's tough trying to be a mom to all 4 kids, when the 3 year old doesn't understand, the 5 year old is in 1/2 day kindergarten and the 7 year old and dad are up in Prescott.  It's not easy living far away when something like this happens.  I am grateful for so much help here in the valley with family and friends, but all the factors make life a little complicated.