Trach Time

Evelyn was scheduled to get her trach put in on Tuesday, February 26th at 12:30 PM.
Todd had worked the night shift beforehand, and Evelyn had had the frightening experience of the night before, so needless to say I was ready to embrace the trach.
Around 11:00 AM an ENT Resident came into Evee's room to let me know that because the Surgery Rooms were all filled up with emergency surgeries, we wouldn't be able to have Evee's surgery that afternoon. I was currently on the phone with my boys, reading them a book, so I didn't ask too many questions.
When Todd got there half an hour later, he was not happy. He did not like the fact that Evelyn has been on the surgery list since Thursday, had an incident the night before, and still didn't get a trach.  I understood his frustration. When Evee quit breathing the night before, I was so scared. It was not a happy moment. I was nervous that it could happen again. Also, the night before a surgery is never fun. You go to sleep somewhat nervous for the next day your baby is going to be sedated and cut open. To go through that again is not fun at all.
The ICU doctor, Dr. Karen, kept coming in to check on Evee. I didn't think this was too strange for Dr. Karen is a wonderful and caring woman. But I did start to notice that Evee's color seemed a little "dusky", but otherwise she seemed great and enjoyed being talked to.
Around the time that Evelyn was scheduled to go in for surgery, her heart rate started to do some funny things.
One second her heart rate was 240 bpm, then a few seconds later it would go to 160 bpm. This had happened before, but shouldn't be happening now since she was on a medication. An echocardiogram was ordered on Evelyn, and sure enough, she was having tachycardia again.
Dr. Karen ordered for another dosage of the heart medication in hopes that it would help her heart get under control. This medication can have side affects if the patient has low-blood sugar, so just before giving the medication, Dr. Karen ordered for a glucose check.

This was not as easy as one would think. Again, her line was having problems. They were able to push things into her line, but were unable to pull anything back on the line. Dr. Karen got to work at putting an IV line through Evee's hand, which thankfully she was able to get to work. They checked Evee's glucose.
It was 24.
Now, these numbers don't mean much to me, for I don't understand them, but based on everyone's response, I understood it wasn't good.

Evelyn's heart rate continued to go really high and inconsistent. Dr. Karen used some wet cloths to try cooling Evee's body down, but nothing seemed to work.
After a couple of hours, the Cardiologist, Dr. S, called in for the "big dog" medication. After two dosages of that, her heart rate started to slow down a bit and become more consistent.
Dr. Karen said to me that this was all meant to be. It would not have been good for Evee to have gone into the operating room, especially with her glucose so low.
I felt the same, that Evee was being looked after by another source, a Divine one, but it has been interesting to see even medical professionals see and acknowledge that Evee has been protected by someone/thing outside of their hands and control. Dr. Karen mentioned many times that even though Evee was smiling that morning, she hadn't seemed as active and something seemed off. Dr. Karen knew something wasn't quite right and kept a closer eye on her until a problem manifested itself.

Evelyn went into surgery Wednesday morning.

While she was in surgery, Todd and I just hung out in her empty hospital room. They only had her for over 2 hours, but it seemed longer. When she came back she didn't look great, which at this point I was more prepared for. She was swollen and had a new hole in her body, but I did get to see her face.

And I will tell you, her face is beautiful.

Trach?

Evelyn slept the rest of the day after being intubated on Sunday, February 17th. I'm not so sure if it was because she was sedated or incredibly exhausted from all of her labored breathing, but I think it may be a bit of both.

Monday Evelyn was looking good. With her having surgery on Tuesday to have her shunt internalized, they were going to just keep her intubated until after the surgery. I was glad that they weren't going to extubate her just to intubate her the next day, but she was doing an awesome job breathing. She was pretty much breathing over the vent, meaning that the vent wasn't having to deliver oxygen to her but that she was able to breath her own air in.

Tuesday Evee had surgery. As always, it sucked to wait for her to go through surgery, and she came out looking awful, but I was glad to have her shunt internalized. A lot of bad things could have happened with it out, that thankfully never did.

Wednesday Evee was doing awesome. The respiratory therapist got Evee a different face attachment because she kept on drenching the usual tape with her drool. This turned out being such a blessing for Evee. She loved it. The new “face clamp” allowed her a little more freedom with her face. She was blowing raspberries, nodding her head up and down, and sucking on the breathing tube like it was a sucker.

Evee's energy was also very high. She was moving her body around like I had never seen. She pulled her legs up to her hands. She wiggled her feet around. And even though she had to have her wrists tied down so that she wouldn't pull out the breathing tube (that would be very bad), she was twirling her hands around and round, playing with her fingers, grabbing at her stuffed animals near by.

During Rounds, everyone would look in and see Evee moving her hands and legs around. They questioned if they should turn her sedation up (for if you're intubated you are usually heavily sedated), but since she seemed happy and wasn't able to mess with her breathing tube, they figured she was fine.

The attending, Dr. Karen, who use to be an Occupational Therapist, commented that Evelyn probably was experiencing a lot more energy since she didn't have to use so much of it to breathe. I would believe it for Evee was moving more than I have ever seen her move.

Thursday morning was the planned morning for extubation. Since we had to wait for Rounds to be over, and for ENT and Anesthesiology to come be present, it was early afternoon when they finally got around to doing it.

Usually they have the parents step out for this, but since I was on the couch talking to my friend Melissa and they knew that Todd was a doctor, no one asked us to leave. I had never watched an extubation and Todd had previously told me that I wouldn't want to watch it, so I distracted myself by keeping in deep conversation with Melissa. Okay, really it wasn't that deep, it was actually very shallow, but we kept things going so that I didn't have to watch what was going on.

As we talked, the doctors pulled the breathing tube. I did notice that Evee's stats were dropping and different people were coming in and out with different tanks and breathing masks. After about 15-20 minutes I was impressed that the Attending remained by Evelyn's bed. I knew the breathing tube was out, so I thought that the Attending was just being extra attentive and kind. Obviously I had never been to one of these!

After awhile Todd came over to me and told me that I should go out to the waiting room. ENT was going to scope her then Evelyn would be re-intubated.

WHAT?!

She had been intubated. They just extubated her. They had the tube out, why would they have to put it back in?

Slightly confused, Melissa and I walked to the waiting room. I was glad Melissa was there for I would have felt very lonely and even more confused.

Finally the attending, Dr. M, came out. She told me that they got her intubated and ENT looked down her windpipe, and they would be out later to talk to me.

Though I didn't expect it, and I don't know why I even came up with it, I asked Dr. M if Evelyn was needing a trach. She very kindly and sensitively nodded her head.

I laughed, not a funny laugh, but more of a “You have GOT to be kidding me” laugh. I told Dr. M about how when I met Bobbi's mom she had said stuff such as “I use to really fight against Bobbi getting a g-tube, but now I love it”, and “I use to be afraid of Bobbi getting a trach, but it turned out not being such a big deal”. At the time I was amazed at this woman's calmness, and now her reality was becoming my reality.

Soon Todd came out. He looked at me and asked if I had heard. I said yes. Melissa asked the doctor if we could give Evelyn another try, or if this was the only attempt she got. Todd then explained that ENT scoped down and looked right before they re-intubated her and they saw that the walls of her throat were sucking into eachother, not allowing any room for air to come through. Then, when they intubated her, they had to go down a tube size because of the swelling. She was already on a tiny tube, she would not be able to “try” again for she couldn't go down any further.

I was stunned. I had felt like Melissa did, couldn't they give Evee another chance? I felt that the doctors were jumping the gun, that Evee didn't necessarily need a trach. Obviously I am always trying to under-dramatize the situation.

Todd later told me that Evee didn't just fail the extubation, she failed miserably. He said that usually a patient will start having problems an hour or two later, but Evee went down immediately. Being an Emergency Physician and being use to step into that role, Todd had started "calling out" orders. He said that his orders were obeyed. Not sure if this is because they knew that Todd is an ER doc and use to running codes, or because they wanted to give Evee every chance of being able to breathe on her own.

I couldn't believe that Evee needed a trach. I felt guilt. I felt guilty that I hadn't been by Evee's side, encouraging her to breath on her own, for maybe, just maybe if I had, then she would have been able to do it. As mothers we always feel guilty. We are supposed to protect our children, encourage them, teach them. When something happens that is out of our control, we feel guilty, that we have failed them somehow. It doesn't make sense. But when you are a mother, you understand my feelings.

Evee's ENT doctor, the one that does 96% of the pediatric trachs in Cleveland, was out of town until Monday. The surgery would not be able to happen until Tuesday. I felt good about that. That did give Evee extra time to prove herself if needed.

Someone had told us that Evee would be in the hospital for a week after the trach surgery. But before she could get out we had to fulfill some requirements.

First, the parents, plus at least one other adult, had to be trained on how to take care of a trach, suction it, change it, and perform CPR on a trach child. Second, the paperwork had to go through to get the child onto Medicaid. That is the only way that the child can get in-home night nurses to come stay with her at night while she sleeps. The hospital cannot discharge an infant with a trach unless that is in place.

Todd and I went to the Hospital's Learning Center to have an “Intro to Trach” class. After that we have 3 classes, each 2 hours long, in which we are trained on the trach know-hows. As we were talking to the nurse about the scheduling of the classes, Todd and I were trying to get the classes done within the next week. The nurse suggested that we have them a week apart. A week? No, we wanted to get Evelyn home ASAP.
Then we were informed of reality. Most kids are in the hospital for 6 weeks, possibly 4 if everything goes smoothly.
Wow! Todd and I did NOT appreciate that information. I guess the biggest hold up (for us) would be the Medicaid going through. We also each needed to practice a certain number of trach changes (changing out the trach in Evelyn for a new one) by ourselves. She was sure that we would be able to do that well, so our holdup was just paperwork.
Not cool.
Upon finding out just what having an infant with a trach entails, I was even more uncertain that we should get the trach in Evee. The responsibility is overwhelming. She can't even sleep without someone watching her in case she was to somehow get the trach off or if it got plugged for she cannot make any vocal sounds. I will have to have two extra trachs with me at ALL times, a suction vacuum, and several other things. All this for someone who hates to take a wallet with me for I don't like carrying things around with me!
Monday, February 25th, the night before Evelyn was to get her trach, Todd was working the night shift. I was alone and had been trying to get to sleep. I was almost asleep when I heard some commotion in the room.
I discovered the respiratory therapist and the nurse standing over Evee. The nurse had just called for the doctor to come.
Evelyn's breathing was incredibly labored. Her stats were dropping. Evee's breathing tube was not working.
 It was hard seeing my baby suffer for air while we waited for help to arrive. I went to her side, whenever the doctor wasn't there, and encouraged her to keep breathing. To push herself a little harder. 
The doctor, who was a Fellow, had the nurse, David, call down to x-ray so that we could see if the tube got out of place. The respiratory therapist (RT) was using a "bag" that attaches to the breathing tube to "bag" in air to Evee, but the air was just coming right out her mouth. The RT wanted to pull the tube out so that she could "bag" Evee with a regular bag. Fortunately the Fellow was really smart and was there for Evee's extubation. He told her no, then when she kept insisting he finally said, "You were not there for the extubation, her throat is closing in on itself. That tube may be the only thing allowing any breath going in."
The Fellow also had Anesthesiology called to come re-intubate her since she is difficult to intubate, which I appreciated. 
David was not able to get a hold of x-ray, only got their answering machine. But as they looked down the hallway, an x-ray technician was pushing an x-ray machine down the hallway to do a routine x-ray on another patient. How fortunate we were!
While the x-ray was being taken, the RT continued to "bag" Evee and David helped. Around this time, the Anesthesiology team came. The Fellow was updating them on Evelyn's status and history. They were going to go in right after the x-ray was done. This was all very nerve-racking and scary. I was glad that we were able to get people that would be the best at re-intubating Evee, but I was nervous that it wouldn't be soon enough.
Once the x-ray was taken, David yelled for the Fellow to come into the room. Evee was breathing. The tube was working again. The Fellow listened with his stethoscope and was amazed. The Fellow had to get the x-ray image to make sure, but sure enough, the placement was perfect. He then excused Anesthesiology to leave.
The Fellow, David, and the RT all stood around Evee's bed while I sat back, looking on. They were all baffled. They had no idea what had just happened. The Fellow, somewhat joking, said that he just a lot of credibility with Anesthesiology. They had no clue of what had actually happened. Did the tube get dislodged and get put back into place? Did it get filled with mucus? I told them that it was because Evee is AMaZiNG.
I sat back, not knowing what had gone wrong, but knew what had gone right. God had helped my baby. I had felt despair. Things didn't seem to be working out for us....but they did. The timing with x-ray, the timing with Anesthesia, the timing of the RT and David to be in Evee's room at the same time, all worked out for the best for Evee.
I don't know if I was given this experience so that I could feel more peace about Evee get her trach (if so, it did work), but I do know that God was watching over us. It was very scary, my stomach dropped and my world was crashing, but then, moments later there was incredible joy and peace. It was good news, in the end, but having those extreme emotions can be very difficult and challenging. I was just grateful that she was going to get a trach the next day so that she would be safer.

The One

My friend Bonnie has 5 kids. One of her boys, who is super cute and I absolutely love, has autism. While in discussion, she mentioned, "Even though I have 4 healthy kids, it still is hard to have one that is not".
I found this very interesting for I feel the same way.
Many years ago, when I was more left-brained than I was heart-centered and understanding, I would have looked at my situation and said, "Well, at least you have 4 healthy kids".
But guess what, it doesn't work that way.
Don't get me wrong, I am incredibly grateful for my 4 healthy kids. I realize what a blessing it is and how fortunate we are. In fact now, more than ever, I understand what a blessing it is and do not take it for granted.
But that doesn't change Evee's situation.
It doesn't matter if you have 1, or 5, or even 19 kids. Guess what, you love each and every individual child, and each of them are important to you.
Regardless of the other children I have, I still have an unhealthy child. And that sucks. I feel just as badly about my unhealthy child as does a parent that it is their only child. Yes, I have my other children that I can find comfort in, but it does not lessen my love for Evee.
In a weird way, I am grateful for this experience for what it has taught me.
I am starting to understand the parable of the 1 and the 99.
If you remember, this is the scriptural parable told by Christ (can be found in Matthew 18, starting in verse 11 and Luke 15:3). Christ tells of the scenario of a man that had a hundred sheep and found that one was missing. Discovering that one was missing, he left the 99 to find the 1. When he found the 1, he rejoiced.
I use to read this and not quite understand how a shepherd could risk loosing 99 to look for just 1. Then I couldn't understand why the shepherd would rejoice over the 1, when he had 99 faithful ones.
 If you look at this story there are things that do not make sense. You think of having 99% of anything, you would realize that you have a great percentage. You would gladly take 99% on a test and dare not complain about the 1% you got wrong. If you got 99% of your income (rather than the reduced percentage because of taxes), you would be thrilled.
But here is where I got it wrong. Christ wasn't talking about things, He wasn't talking about money, He wasn't even talking about sheep. He was talking about us. He was talking about the Sons and Daughters of God.
And guess what, regardless of how many people live, have lived, are ever to live, our Heavenly Father and His Son, Jesus Christ, love us. Each of us are special. They want us to return to Them. They want us to go to Heaven. Though They will be grateful and happy about those that make it to heaven, They will still mourn for the individuals that don't. This does not mean that They do not love those that were faithful, just as it does not mean that I am not grateful for my healthy children.
It just means that we are loved individually. God loves us. He loves us in spite of our shortcomings. He wants us to become better for He knows how it will help us.
God has not forgotten even one of his children. He works tirelessly for us. He has joy for every good choice we make and he has sorrow for every poor choice we make.
God loves us.
God loves me.
God loves every individual person.
God loves Evelyn...much more than I love her, and that is a lot.

Breathing Troubles

Saturday night (February 17th) my mom stayed the night at the hospital with Evee while Todd and I stayed with our boys. While snuggling several of my boys, my mom called Todd's phone. She gave him an update of the night.
Evelyn has been notorious for dropping her pulse ox (amount of oxygen in blood - 100% is ideal, lower than 95% gets worrisome). When I mean dropping her pulse ox, I don't mean dipping into the 80's (which is bad) but I mean having regular episodes of going into the 60's, and I have seen it drop as low as 38. I have had nurses think the sensor wasn't reading correctly, Residents come in to check if everything was working how it should be. The first night or two in the hospital (for it usually occurs when she is sleeping), the nursing staff will be quite anxious about it. After that everyone accepts that it is her baseline and since she comes back up, maybe it's not that big of a deal.
You loose brain cells everytime you loose oxygen, so naturally I was concerned that maybe she was slowly causing brain damage to herself. Whenever we have been in the hospital, it has never been a main focus for there was always something else going on, so it never has been addressed.
That was until Saturday. The Fellow, Ingrid, was concerned about her dropping her pulse ox and wanted to have a downloadable pulse ox on Evee while she slept that night. The only difference with this pulse ox is that they would be recording all of the episodes, being able to give the doctors viable data.
According to my mom, starting around midnight, Evee kept dropping her stats (pulse ox). The nurse would give Evee oxygen, but then get in trouble by the people running the test for she was not giving them a true test, to which she replied, "I'm not going to just sit and watch her drop her oxygen levels". My mom said that she would hurry home so that we could get to Evee. Since this is a common occurrence with Evelyn, I wasn't too terribly concerned.
Todd had a speaking assignment in a different ward, so I had the privilege of taking the boys to church by myself. Fortunately my mom got to the house in time to join us.
At church there was a visitor that was helping pass the sacrament (bread and water) to the different rows. This boy was special. This boy had Down Syndrome. I was lucky to have him pass it to our row.
After the Downs boy passed our row, William whispered to me, "His face is kind of scary". I brought him closer to me as I explained the truth about these special people. I told him that the boy had been so valiant, so righteous in heaven that he didn't need to prove himself on earth. Heavenly Father sent him in a body with a mind that didn't quite work right. Though life seems hard for him now, he is guaranteed placement in the Celestial Kingdom (highest degree in heaven). I explained that Evelyn was just like that boy, she had been so righteous in Heaven, and she was so special, that Heavenly Father sent her in a special body to protect her from the temptations of Satan. I don't know how much William understood, but knowing how brilliant he is and what a thinker he is, I am sure that he has been rolling it around in his mind.
William has come to understand that Evelyn may be developmentally challenged. I'm not sure of what the other boys have picked up, but twice now William has mentioned Evelyn being "crazy" when she grows up. He says it not in a mean way, but more of an informational way, more that he is accepting the fact.
During the meeting Grant was getting antsy. Though I would normally never do this, I decided to grab my phone and show him pictures of Evee. This turned out being an unseen blessing for while he was looking at pictures he handed me the phone. It was ringing, silently. A hospital number. I would have totally missed it if Grant hadn't been holding it.
I grabbed the phone and very quickly exited the meeting room and answered the call once I was in the foyer.
It was Dr. M, an attending at the PICU that I had not met yet, nor had she taken care of Evelyn previously. She explained to me that Evelyn was having a hard time breathing. They were giving her a mixture of oxygen with helium, but she wanted me to be aware that they may have to intubate her. Evelyn's breathing can be quite alarming to anyone that has not seen her previously, and I have been warned that if she ever was seen by a doctor that didn't know her baseline breathing, they may try to unnecessarily intubate her. Knowing this, I made sure Dr. M knew that Evee's breathing is usually labored. She assured me that she was informed of this, but that this was more serious. I knew that Evelyn's nurse was Sarah, someone that has had experience with Evelyn, so I asked if Sarah felt that Evee's breathing was more labored. She replied in the affirmative. Still I wasn't totally sold that they were not being overly dramatic. You have to understand, I was raised by a Rancher's daughter. We grew up never going to the doctor and my mom is the farthest thing from a hypochondriac that is possible. If anything we learned how resilient our bodies really are and that sometimes all the fuss is unnecessary.
I sent a text to Todd to come pick me up after he was done and we would go to the hospital and set everyone straight.
After Sacrament meeting I was in the foyer with my mom waiting for Todd to come. As it was clearing out, I saw the Down Syndrome boy. He very suavely shot his pointer fingers at me and electric slided over to me. He was hilariously flirting with me. He told me I was beautiful and that I had wild hair (why do people keep saying that!). He hugged me and claimed me as his girlfriend.

His name was David. His mom, Gina, came over and introduced herself...and David. She was baptized in our church building 39 years ago. David was her 5th child and 30 years ago, when she had him, she had no clue she was having a Special Needs child. She went on saying how awesome he has made her life, how she wouldn't trade it for all the world. All this was said without me telling her about Evee.
When my mom told Gina about Evee, Gina replied with, " A coincidence is God's way of remaining anonymous". I totally agreed. Gina actually started a company called Sharing Down Syndrome Arizona, which helps connect the families and caregivers of these special people.
Todd came in to get me, so he met David as well. David hugged Todd while Gina tried to tell David that Todd was my husband. David replied with, "My hu-band". He was just too cute.
Todd and I drove to the hospital. We discussed how we would need to let the doctors know how Evee normally breathes and that she was okay. Todd was a little nervous for he said that the oxygen mixture they gave Evee was sort of a last ditch effort before intubation. 
We navigated through the parking lot, elevators, and hallways. I came into Evee's room, ready. 
I did not like what I saw.

Evee was lying on her side, a nasal cannula on her face, eyes closed, chest and abdomen struggling to take in breaths. She sounded terrible. She looked terrible. She looked like she was loosing consciousness. 
Dr. M came in and told me how earlier Evelyn would at least respond, but now her body was getting too tired to even respond. We all agreed, Evee needed to be intubated.

Todd and I left the room while they intubated Evee. It took some time, and Todd actually had to leave for work before they got it done. After they finished, a Resident came in to tell me, and to let me know that she blew out her femoral line, so they had to put one in her other side.
Great, more time in the waiting room by myself.
My mom was going to bring the boys to the hospital after church was over. I called her to tell her to not bring them, they didn't need to see her right now, not how she was doing. Though I did crave the company.
When the doctors were all done, I was allowed back into the room. 
You always know things aren't great when these are off of Evee's body

Unfortunately she has had to have them off a lot recently.
Evee did not look great. She was still and sedated. Her eyes were taped close for she keeps them slightly opened and it can dry them out. 

Life was not fun. My daughter was intubated and I was having to see it and deal with it by myself.

After about an hour I got a text from Todd. He was coming back. The Attending at work found out what had happened and told him to leave work. I was so grateful.
The people Todd works with have been amazing. They have been so supportive and helpful. Other Residents have offered to take shifts, Attendings telling him to not worry about coming in. One Attending has come to the hospital twice now, bringing us dinner. It is nice to know that we have a great support system, awesome co-workers and bosses, and incredible friends. They (You) have made this journey a lot less rocky.

Hospital Time

Last year, after finding out that we were having a baby girl, I bought some fabric to have the boys (Mikey and Roger) make her a quilt. I cut the squares...well, actually they were rectangles, but the boys did the rest.
Knowing that it would be a great fine motor exercise, I taught them how to sew by hand. Every day they had to sew a certain number of squares while we listened to a Spanish Instructional CD. I listed to it with them, but I am not any better at learning the language.
The boys sewed the rectangles into strips, then sewed the strips together. It was really interesting to see they boys sew for their personalities and work ethic showed through. Mikey always finished his work and would usually do some extra, but his stitches tended to be sloppy and I would frequently have to help him undo a knot. Roger's stitches were amazing, the spacing was immaculate and precise, but he wouldn't always finish his work for he would start day-dreaming or goof off.

After the boys got the front all pieced together, I laid out the batting and the material for the back. They helped me pin the front to the batting and back, then we cut it. Grant was even able to help cut, which he loved and was upset when he couldn't cut anymore.
With the blanket all pinned together, I introduced my sewing machine to the boys. I gave them a little lesson on how it worked and how to use it. After letting them practice on scraps, I let them take turns sewing the blanket together following the long rows of the pattern.
All of this was done before Evee was born. All that was left was the binding. Though I had planned on teaching the boys how to bind it, I just never got around to it. When my mom came, she decided to just do the binding herself. 

Monday, the day after Evee was extubated (breathing tube out), my mom brought the boys to see Evee. The boys brought the finished blanket and very proudly gave it to Evee.

All of the nurses love my boys. They think they are so cute. Everyone is also impressed with how affectionate my boys are with Evee, even with all of the "new and scary" things going on with her and sticking out of her. I was told that most of the siblings in this situation will take a long time to warm up their sibling with "weird" medical things going on. Little do they know that my boys have been hearing about medical things since they were very little, looking at medical textbooks, and asking everyday for Todd to narrate what he saw.

Before everything went down, the kids and I were going to go to Utah to visit my family on February 20th. I think I had jinxed myself for I said, "I can't live in fear that something may happen. I've just got to plan on living my life".  It turned out being a good thing that we had the kids' airline tickets for it was decided that my mom would take the boys (using those flights) back to Utah with her for two weeks. Honestly, I had hoped that Evee would be out of the hospital soon after they left, but that's a whole other issue.

Knowing that I hadn't spent much time with my boys, and that they would be in Utah for two weeks, my mom insisted that I came home to spend time with them. Many days I would leave the hospital in the evening (with my heart breaking to be leaving my baby) and drive the 45 minutes to see my boys, spend some time with them, and go to bed. When I would get to my house, if Todd wasn't staying at the hospital, my mom would take the car and go to the hospital to stay the night with Evee.
I won't lie, all of this was very exhausting, physically and emotionally. I hated leaving my baby, but loved seeing my boys. Hated leaving my boys, but loved seeing my baby. But, wherever I was, I was sure to do some Facetime.

 My mom did such a great job with my boys, though I know it wasn't all smooth and dandy. She brought them to the hospital many times, and did fun projects at home.

Evee was in such a cranky mood all week. This is exactly opposite to Evee's normal disposition, so it was very frustrating.

She whined and whined.

I'm not sure I ever saw a smile

Miss Betsy (her PT) came and worked with her. Betsy was cautious and considerate, knowing that Evee had just gone through surgery, but when Betsy worked Evee, Evee complained like she normally does.

But Betsy did say that she has had grown ups and older kids say how painful a chest tube is, so I had to give the poor baby some sympathy.

I actually had a lot of sympathy for my baby, but I was getting concerned with why she was acting this way.
She was incredibly irritable. She wasn't even happy that on Valentine's Day I had brought her a cute outfit to wear.

She wasn't getting a great amount of sleep. During the day she would awake to anything going on, and at night time she was woken up frequently.

 
She was chewing on her fingers a lot, so I assumed that she was teething. I tried feeling her gums, but did not feel anything. I gave her some numbing stuff on her gums, but that didn't seem to help.

One evening I noticed her arms were shaking. Turns out that Evee was having withdrawals from the narcotics. This made me so sad.
Valentine's Day Evee and I got "dressed up"

Yes, this is me dressed up

That's what happens when you're in the hospital.
Todd joined Evee and I after his classes at work. My mom (who happened to get long stem roses from an admirer, and THREE Valentine's Day cards sent to her while at my house!) brought the boys downtown.

And we went to lunch at The Melt. A local favorite that specializes in big sandwiches.

My boys had picked up some Valentine gifts for me, and they very excitedly gave me them. Roger was especially anxious for me to open my Pez dispenser from him and share it with everyone.
That night I came home. My mom had signed up to feed the missionaries. We had fed the missionaries on Christmas, so we joked that we were just trying to feed them for every holiday. The missionaries are great. They are so positive and bring a great spirit with them. They gave us a great lesson, as they always do.
Not too shabby for a Hospital Valentine!

By Saturday morning I was getting really nervous about Evee. I was feeling anxiety. She wasn't acting like herself and I felt as though something was going to go down, that maybe we were missing something.
I happened to see Evee's neurologist, Dr. N, and asked her if she could stop by when she had time. I explained my concern, which she validated. She had checked on Evee earlier and was surprised with how upset she was.
Just a little while later, Evee finally fell asleep. I asked the nurse, Sarah, if she could make sure that no one disturbed Evee while she was sleeping, for she needed to get some rest. When Todd's parents came an hour later, we met with them in the waiting room for I did not want to wake Evee up.
After Evee woke up, we went into her room. There, in her bed, was the Evee we all knew and loved.

She was playing with her hands.

She was hitting herself.

She was blowing raspberries.

She was back to herself.

I was so relieved. I had been so worried about her. I wanted my sweet girl back. I had wondered if it was something to do with the shunt still being externalized, but it all turned out great.

Life was good. Until.......