I missed my boys. My friend that had stayed the night with them sent me a text telling me that Grant bopped down the stairs and the first thing he said was, "Did you know that it's my mom's birthday today?" I was so impressed that he remembered, but it also made me sad that I was in his thoughts but I wasn't with him.
Evelyn was stable (sedated) so I decided to go for a run.
It was a great run. I felt incredible joy, incredible gratitude. It had been a hard day the day before, but we had been so blessed. I didn't even mind too much that I was spending my birthday in the hospital. I was also excited for my mom was coming into town in the evening and I was going to pick her up from the airport and spend the night with my boys.
When I got back to Evee's room, the doctors were rounding at our room. During "Rounds" all the primary doctors are present, with Residents, and nurses, or whoever else is needed in the care. This all takes place in the hallway, outside of the patient's room. Since there wasn't much space, I hung out in the back and listened.
Listening is interesting at times, but sometimes it gets long, depressing, old. They were about finishing up when suddenly I was feeling rather sick. I thought I would throw up then and there. I wasn't sure what to do, the entrance to the bathroom was blocked and I had to go around several people to get to Evee's room. I finally decided to go to Evee's room. I got in there and first went to Evee. The nurse was on the other side of the bed, recording the ventilator numbers. Evee was still intubated, but she looked different from when I left to go running. Her neck was swollen, looked large. I questioned the nurse, who came over and inspected. Sure enough, she agreed. Luckily, rounds was still going on, so we were able to alert the doctors.
When Evee was in surgery, the surgeon had put in a Central line. This was to help her have a good line since she is a tough stick when she gets an IV. This is also a very resilient line, but of course, as luck would have it, hers got pulled out and flooded her neck/chest area.
This wasn't great news, but I was grateful that we noticed it while the doctors were all right there. Something had made me sick, and I was grateful for that.
Later Dr. D, the surgeon, stopped by and apologized up and down. He wasn't sure of which size of catheter to use and had gone with the short one but now was questioning that decision. He also mentioned that even though he had secured it with several stitches, her skin is....."doughy" I finished for him. Todd later explained to me that it really wasn't Dr. D's fault for there are 2 sizes of catheters. The short one, which he used, is not great for it can get pulled out of place more easily, but the long one is not great either for it can tickle the heart nerves (he used much more sophisticated words to describe it, but this is what I understood). With Evee already being known to have had some heart issues, I was grateful that he didn't use the long catheter.
Things weren't going too great. Evee wasn't able to get extubated yet. She was still heavily sedated, she now had fluid in her neck, no IV access and there was a worry in the air. After some time, I took my stuff and went down the hall to take a shower (I was too stinky for anyone to stand being near).
While in the bathroom I broke down. I cried and I cried. I finally let all of the stress that I had been feeling come out. It is hard to have all of these very strong emotions going through your body, and they can be extreme one way, then the next moment it's extreme the other way. I didn't know what was going on with my baby and it hurt, physically hurt, to be going through this. There was an ache in my chest that I could not get rid of.
After I got back to Evee, the room was full of medical professionals trying to get some kind of line in her. Dr. D was also stopping by to give Evelyn a chest tube to drain the fluid from her neck and chest.
Todd and I were asked to leave while they tried to get this done. They do that so that the parent doesn't have to watch their child in pain and also so that they don't have to work with the added pressure of a parent watching closely. I gave Evee a kiss and left.
We were worried for Evee. Without any lines, she was not getting any sedation meds and therefore was closer to waking up and feeling all of the pain she was in. Also, she wasn't getting any nourishment. Not. great.
Todd and I went to a waiting area just outside the PICU. We sat looking out the window that looked across a courtyard over to Evee's room. Even though we couldn't see into the room very well, we could see some movement.
As time went on and on, my worry got greater and greater. And so was my guilt.
Lately I had been feeling rather exhausted. Since Evee has been born there hasn't been a lot of rest for me. I have had to go to different doctor appointments, hospitalizations, and the worst, Physical and Occupational Therapies (PT/OT).
Going to PT/OT can be incredibly hard and exhausting, both physically and mentally. It is so hard to take your usually unusually-happy child, who has gone through so much and doesn't complain, and subject her to 1.5 hours of work, crying, and exhaustion. I absolutely love and appreciate her therapists for they do what they should do, not what they want to do. They push her, they challenge her, even when she is crying and turning 5 shades of red. And though I am right there with them, encouraging Evelyn, it is really hard. Especially afterwards when I have to think about how upset Evelyn was, how sad she was, how hard it was. It seems so unfair. She has to go through so much pain, and work so hard to do something a 4 week old can do. This reality is also slapped in my face whenever I see a baby younger than her holding their head like a champ. I'm not mad at the other baby, just reminded of the reality that Evee is working hard for something that comes naturally to most other babies.
I had recently watched a video of another M-CM kid doing therapy. This kid was several years older than Evee, but it seemed the same. He was obviously working on harder things, but it was the same story. He was whining and crying while working. It made me realize that this is a long process. This would not be just this year, but most likely it will be going on every year of her life. I felt exhausted and overwhelmed with the reality that I (and Evee) would have to endure this. It made me want to hide under a rock.
Now that things were not medically going well for Evee, I felt very guilty for having those feelings of exhaustion, of surrender. Suddenly I no longer was feeling sorry for myself that I would have to go through all that work and pain, but rather I was hoping for the opportunity to do it. I would do anything for Evee, I would go through anything, I just wanted the opportunity to have her continue in my life.
We ended up sitting in that waiting area for 3 hours. Yes, it took them 3 hours to get something in. During this time I kept worrying about how Evee wasn't having any pain meds, or how we were set up for a crisis for nothing could be quickly put into Evee's body if she got into trouble. It was a great birthday, let me tell you.
A friend of ours was going to the dentist near by and stopped by after he was done. We were still waiting for Evelyn, so it was really nice to have a distraction.
He mentioned that my kids had been over at his house playing with trains earlier that day. Crazy as it may seem, I had no idea where my kids were and who was watching them. My boys were in my thoughts, but thankfully I have some great friends. They just took over where I needed them to. When I had gone to the ER, I told them and they had taken care of the rest. What a blessing it is to have such wonderful people to help.
After a very long 3 hours, the doctor came out to tell us that they finally got a line. We were grateful. If it had been much longer, they would have to have gone into the OR and put in a broviac catheter, a more permanent line, one that cancer patients usually get.
We were happy to be back with our girl. Grateful that she was getting her medicines and fluids.
A few short hours later I left the hospital to get my boys and pick up my mom. I left with such a heavy heart. I was excited to see my boys and mom, but it was hard to leave my girl. I had never been away from her for a night, and it was hard to actually be doing it.
I drove to my friend's house to pick up the boys. It was so good to see them. They enthusiastically asked if I had brought Evee with me. Ya, I was wishing for the same thing. We then went to go pick up my mom from the airport.
It was so good to see my mom. Though I wished the situation was different, it was also a good time for her to be with me.
When I got into my house I was surprised (and the boys were thrilled) to see that people had remembered/celebrated my birthday. The boys ran around with excitement as we discovered all that was done for me.
Over the back door was a huge sign wishing me a Happy Birthday. There was a poster wishing the same. Streamers hung from several of the doorways, balloons tied on the banister. A gift basket of Lemons and Sunshine, a fruit bouquet from Edible Arrangements (my dad knows that I love getting that for my birthday every year), and two birthday cakes. What can I say? I have some incredible friends.
Then the boys handed me a gift bag they had gotten for me with Dorothy. In it each child had chosen a gift for me. My gifts were amazing, a roll of tape and other quirky things but the boys were so excited and I loved how they thought about their own gift.
I would love to say that I enjoyed and cherished every minute I was home, and though I did enjoy it, I was still very exhausted. But most of all, I still felt as though my heart was being pulled by an invisible string, a string that came all the way from downtown Cleveland. It felt so lonely without Evelyn. At times I would forget and subconsciously think that Evee was up in my room sleeping, but whenever I entered the quiet darkness of my room, void of her loud, rhythmic breathing, I was hit with the reality. My baby was not with me. That just plain sucks.
But I did enjoy my kids. I talked with them and hugged them. They are such a joy in my life. I had William and Grant sleep with me, and you know I snuggled them all night.
I had told Todd to call or text me if anything went wrong at the hospital, so when I woke up the next morning, I was happy to see that there hadn't been any emergencies.
I grabbed my phone and read the scriptures on it while I lied in bed with my sleeping boys. A text came through from Todd. He asked when I was going to be coming back to the hospital. I told him in about an hour, after breakfast. He told me to take my time, but mentioned that Evee had a rough night. Her heart rate kept dropping. It went down to the 80s, then to the 50s, then even to 38. I didn't totally understand all this, but I knew it must not be good.
Evee kept her heartrate around 50 bpm for about 2-3 days. Cardiology didn't seem terribly concerned. But then when I saw Evee's Cardiologist, Dr. S, in the lobby I asked him about Evee. Dr. S had been out of town, but said that we shouldn't be too concerned, after all Evee's heartrate was 75-100 bpm. I corrected him and told him that it was at most 60. I don't know if he was told the correct information or misunderstood, but it was not a good thing.
Todd has said that Evelyn has made him question his medical training. He said that if a baby ever came into the ER breathing like Evee does, retracting the way she does, he would intubate her--but then we have had her home for many months breathing that way without too much concern. Todd also said that in the literature and in his training, when an infants heart rate gets down to 60 bpm, you start doing chest compressions. But with Evee, we just watch it.
One evening my friend Bonnie (PICU nurse with 5 kids) came and hung out with us. Bonnie is quite smart (you have to to work in the PICU, other areas, not so much, but here, oh boy, these nurses are amazing) and she too was shocked as we watched the heart rate, but even more so as it went down in front of her eyes.
The nurse got nervous and called the doctors. They told her that if the heart rate goes below 50 to physically take her pulse and see if it correlates. After 15 minutes of the nurse getting frustrated for 48 and 50 are very much the same, she called the doctors.
No one knew what was making her heart rate slow, and no one wanted to take the responsibility. Cardiology was saying it wasn't their problem for it wasn't a problem with the heart (since the heart responded to a medicine, showing that the heart was responding to messages correctly), and Neurosurgery was saying it wasn't their problem for she had a CT scan that looked like the one she got earlier. We were unsure of what was causing it, but there wasn't much we could do.
Thankfully, her heart rate slowly started going back up into the normal range.
Saturday night I stayed with the kids and went with them to Sacrament meeting. As usual, there were good talks and I was touched by the Spirit of the Lord. But, I was anxious to get back to my baby. They were planning on extubating Evelyn and I wanted to be there when it was over.
As I was driving downtown Todd called me. He said that they were ready to do it, but were wondering if they should wait for me. Since there was a lot at play, medication times, doctors being available, etc., I told them to go ahead without me.
I quickly got to the hospital to find that Evelyn had been successful in being extubated. I was so thrilled. I was nervous that since she had been intubated since Tuesday, and they kept talking about possibly extubating her the entire time, that she would not be able to be extubated. I was nervous that her muscles, especially being low-tone, would forget how to breath, forcing her to have to remain intubated or get a trach.
Being in the hospital has proven to be a roller coaster in itself. One minute it feels as though the world is crashing down and I ask the Lord, "How much can I endure? Can't you see that I am broken?", but then the next minute everything seems to be going well, mountains have been climbed, Evelyn's situation doesn't seem so terrible, and recovery is happening.
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