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! 

12 days...and counting...

Still here at the hospital. Last week was ROUGH to say the least. If I had been told ahead of time what it would have been like, I don't think I could have done it.  Ruby coughed AROUND the clock. A horrible and uncomfortable cough that was constant while she was awake and enough to wake her if she wasn't deep in sleep. Nights were even more rough. Nurses would walk in and say,"that sounds horrible, is she always like this?" "No! Silly. That's why we are here!" Except, I didn't so much use the word silly then. Ruby's been in an antibiotic, so between the coughing attacks she blew out 2 outfits a night.  I spent most of each night holding her, falling asleep while she coughed in my arms :/. She also had to be put on oxygen later in the week.

I have been asking all week to see a pulmonologist and an ENT. The peds dr.'s kept telling me they will call them when they are out of ideas. I felt stuck and as if they were trying to keep her from seeing the specialists I wanted. We were at a new hospital (we were at Cardon's in the NICU...so all of her history is there) so while our ENT has rights to treat her at PCH (but he's on vacation), our pulmonologist is an employee of the other hospital, so he can't treat her at PCH. So, we were requesting a random pulmonologist that doesn't know Ruby. Either way...we need to get one involved. This little babe has seen specialists for all of her little life, why now, when she is doing terrible, do we not involve any specialists?? 

I felt like we were in a tough spot. I don't want to be "that mom" that is a nightmare, but at the same time, we have been here 12 days and she is gotten significantly worse. Something needs to change, and somehow we need to figure out how to work together to get to that result.

Finally, on Friday they called the pulmonologist here and she had them put her in a 5 day steroid to open up her airways. She came by yesterday while Nate was here and he said I will love her. She did a great job of explaining things really well.

Last night was the first good night in a long time. She slept the entire night, didn't cough and all morning while awake was super content. She has had a great nap and woke up bright eyed without crying...until her last respiratory treatment. They started a nebulizer breathing treatment with her easy pap breathing treatment yesterday. They have been fine until this last one. Now she has been coughing for an hour and drifts to sleep and wakes herself up coughing. This is just what happened last week. :(  

I don't understand how this treatment time, it made her cough, but the past few didn't. So bizarre. The hard thing was that I had such a great morning, thinking we were all going uphill, and we'd get out soon! Seriously, is that what I get for being hopeful? I pray it doesn't keep happening and nothing brings that wretched cough back. If I could only just throw it out the window. 

I am really grateful for the nurses here. Some are really, really great and you know they really care. It is sweet to see some of them speak to Ruby so sweetly. You can definitely tell which ones love their job, and we have had some great ones.

I am hopeful we'll get out this week sometime. It's crazy how your perspective changes and instead of talking in the time frame of each day, the vocabulary changes to each week. I am just ready to get my happy Rubylicious home and have our family all together again. 

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. :)

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. 

NICU pictures

I had a hard time acknowledging that Ruby was in the NICU for so long...because no one could figure out any conclusions to what was going on inside Ruby's little body, they'd say, "plan on staying a few more days."  I didn't really think we'd be in as long as we were.  My friend, who is a photographer asked me if I wanted pictures of her in the NICU and I thought, no way.  I just want to get this part overwith and start normal life with her at home.  Then, I realized that although it was different than any of my other kids start in life, this is Ruby, and I want to remember this too.  I am not "missing" her newborn stage...her newborn stage is just different, and I need to accept that. 

So I called my friend, Lindsay, back and asked her if we could squeeze some pics in before she took a big trip to Europe. 

I will always love these and am so grateful she offered to do this!

Meet Ruby Valentine

Little Miss Ruby Valentine was born on April 17, 2013. I went into labor at 39 weeks with a normal, uncomfortable by the end, pregnancy! Being the 4th, she realized from the get-go that she needed to demand her attention from us. She wants to be the star! After placing her on my chest after she was born, I heard one of the nurses say, "she'll start crying any second." Seconds went by and nothing happened. Then I felt them sweep her up and call for more help. I started crying and asking if she was ok. They had a blow by (a hand held bag that pumps oxygen) on her mouth, pumping oxygen into her little body, but tried to reassure me(I say tried, because there is no reassuring a frantic mom who's baby isn't breathing on her own) that because they still had a heart beat everything would be ok. That went on for what seemed like forever, but I am sure was just a few minutes.

The next two days were great... I was relishing the fact that I could just sit and cuddle my new baby before going home to my little army of chaos. Ruby was super sleepy and was not interested in eating. She had a rough entry and just wanted to be left alone to sleep and cuddle. By the second night, I started to worry that she wasn't eating. I could NOT wake her to eat. She couldn't latch on to me. She would try to latch and seemed so stuffed up that she couldn't do it. Her cry was very soft. All of this, everyone just attributed to her having a rough entry. Although she was such a sweetie, content and seemed to be doing well, there was just something deep down I couldn't relax about. Everyone that came to visit, I feel like I held back saying that I felt something was wrong. It just didn't feel as normal as it should have or did with the others. Later that night after Nathan got back from taking the kids home, I asked for a bottle to feed her to see if that would be any easier for her. She immediately started choking and turning blue. It was horrible. After screaming for a nurse and pushing my call button frantically, Nate ran outside and yelled for a nurse. As nurses rushed in, they helped her recover and reassured me that everything was fine and that she just needed to learn to swallow and showed me different feeding positions to help her. I admit to kind of rolling my eyes, thinking, "I know how to feed a baby a bottle. This isn't my first go round." I knew something wasn't right and that they had no idea. They took her to the nursery to see what they could do and at about 1am woke me up and told me she was in the NICU.

From there, no one knew what was wrong. They kept asking me if I delivered her early, thinking she just hadn't developed her swallow yet. All the answers were "no" and "the pregnacy was just like the other 3", " no complications". So they put her on an NG (nasogastric) tube after trying unsuccessfully to feed her and there we sat until someone had something else to try and the neonatologists could see her and give more options. One neonatologist suggested that we don't let her get lazy on the ng tube and continue to try to bottle feed her until they figure out what is going on. I really wasn't happy about that. He had not seen her try to eat. It was torture to watch her turn blue every time someone fed her a bottle.

Three days later we transferred to Cardon's NICU to get more testing done and see specialists.

 

 Our favorite nurse at Gateway, pulled me over before we left in the ambulance and said, "you fight for your baby. Whatever they say, you KNOW she can't eat...DO NOT let them feed her with a bottle." Best advice I have ever gotten. I am the type of person to think the Dr.'s would have the answers because I don't know what's going on either, but her saying that gave me the ok to voice my opinion and say how I felt for those next 4 weeks. I am so thankful for that nurse. I felt like we did a lot of waiting for the miracle cure, but got nothing.  Everyone was stumped. We started in the critical care unit because Ruby's oxygen levels were dropping into the 80's quite a bit.  They want them to stay in the upper 90's to 100. Plus she was on an ng tube, but was getting such little amount of breast milk that they were monitoring how they could bump up her quanity. A few days after being there, the speech pathologist, Deann, took her in to do a swallow study, where we got to watch an x-ray in real time to see what happens when she drinks. They give her barium liquids of different weights, to see what she could swallow without choking.  It starts at the consistency of breast milk and moves up to double honey.  She failed all of the liquids. They all went into her lungs. Most cases they can thicken breast milk or formula and kids that have problems swallowing can drink thickened liquids.  That is what we were hoping we could do.

We then saw Dr. Page, her ENT, to get a bronchoscopy done and see if he could tell what was going on. He discovered she had a laryngeal cleft, which is a rare abnormality of the separation between the larynx, or voice box, and the esophagus.  They range from I-IV.  Dr. Page now needed to take her and put her under anesthesia to see what if any repair could be done right then...however, she was also on oxygen and he wanted to wait until she was atleast strong enough to get through the surgery without complications...After the bronchoscopy he discovered a level II cleft and a small airway on the left side into her left lung.  This lead to a future surgery date when her oxygen would stabalize, but also rose a concern about what else was going on inside her body.

It then seemed like every test under the sun was ordered for her...x-rays, ultrasounds, hearing tests, which she failed twice, an MRI, a CT scan, and echo on her heart, an eye exam. I couldn't believe she was having to go through this...yet more surprisingly there were no answers. None of those tests came back perfect, saying everything was great except for her cleft.   She failed her hearing, she has bilateral congenital cataracts, she has a rough left ventricle in her heart and a larger hole than normal that should have closed after birth. Her corpus collosum (the connection between the right and left brain) is thin as compared to most, and she has low upper tone... AND to top it all off, they kept telling me, but that doesn't mean anything. It doesn't mean she won't function as a perfectly normal child. What on earth does it mean?  Nobody knows.  What else were they going to find. I honestly wanted them to stop running these tests so I didn't have to hear anymore. I have never been such an emotional wreck.
I swear they sent their counselors in to see if I was going to be ok, or if I needed to be admitted to the mental hospital. I am sorry, my baby is suddenly in the NICU and nobody knows what's wrong, she is being tested like crazy and more and more findings are coming to the surface.  I am a BIT emotional.

But during this...I was given blessings, she was given blessings and lots and lots of prayers were said in behalf of our family and Ruby and conference talks were read and people fasted for us...and we knew that everything was going to be ok. Ruby may have complications, but we are going to figure her out. Eventually. I was still emotional, but knew deep down that Heavenly Father was in control. He's got this, and so can we.  I just have to be patient.

At 3 weeks of lots going on, and still no complete answers, she was taken into surgery for her cleft. I was a wreck knowing she was going under anesthesia, but at the same time wanted to fix the problem.  Fix it, so we can start feeding her and go home.  She also has reflux, which seemed so small and insignificant in comparison.  It mattered though, because if she was spitting up, it'd go right into her lungs. Because of this they decided to put her on 24/7 continuous feeds and have her sleep in a tucker sling to keep her upright.

Surgery took a couple of hours and the ENT came out completely positive about how it all went. He had amazing pictures and was excited to get her another swallow study.  Her left lung did collapse and they found she had tracheomalacia and she was intubated for 24 hours.  They were hoping that her lung would pop up the next morning and it did!! When they took her off of the ventilator she was able to breathe completely on her own and didn't have to be on oxygen since!  Woohoo!  Things were looking up and we were moved into our own room into a pod for kids who get to go home soon.  It was as if Ruby had done a complete turn around since her surgery.  She was breathing better, she actually opened her eyes for more than 5 min. at a time and we felt ready to be home and have our little family all under one roof.

We had a care conference with all the specialists (minus the cardiologist Dr. Ellsworth):
Everyone was a little more conservative on the time frame, compared to Dr. Page.
Dr. Allare (Neonatologist)
Dr. Page (ENT)
Dr. Carter ( Pulmonologist)
Dr. Yuen (Neurologist)
Deann (Speech Pathologist)

The plan was to get Ruby home and follow up on everything. Surgery had gone well, she was off her oxygen and she was like a new baby. We had been there 4 weeks now and were ready to get her home. We have been blessed with so many amazing specialists and nurses that really care for Ruby and have done so much for her and us.  As much as we wanted to get home, we had made a little "hospital family" with those that worked so closely with us and we would miss them too...but we were ready.  We were trained on how to put in her feeding tube and check placement and trained on the machines. We had all 10 (10!) of our follow up appts. set for us in the next month and were on our way!

 It was a happy day to come home and get to spend time with all my kids under the same roof.
The 4 weeks in the NICU were so hard to try to split time, and they wanted sweet Ruby at home with them!  I would spend all day at the hospital and be with Ruby and then come home at night and be with Landon, Olivia and Henry in the morning. Leaving each of them to go to the other was so hard and taxing.

 

We have the BEST neighbors that gave us a big welcome home!  I totally cried.

 

As hard as that 4 weeks was, I am thankful that Nate had the time he could take from work and spend it at the NICU with me. It was so good for both of us to be there and be with each other and grow closer together and to Heavenly Father, knowing our baby is in His hands, and that everything we do, we are doing because it's the best for Ruby.