Singing Along with Rock Band

How do you keep a baby busy who has to sit all day? Get out some plastic guitars and a fake drum set and put Baby on vocals.  The picture is of her doing her version of  Yellow Submarine.  Did the Beatles ever fuss when people weren’t watching? Hmm…

We’ve been doing good, just a slight cold running through the house. It’s decided to live forever in my face without getting better or worse. Nice. Does this get me out of reading? No. I still am required to read until my sore throat gives out and I start a coughing fit, and even then the little girl is pretty demanding about more stories.  

On a totally random tangent, I found I have an aversion to people saying they should “count their blessings” after seeing my kid (or a picture of my kid). Not cool. I don’t look at a picture of them and say, “Wow, thank the good Lord I’m blessed with the face I have; it could be a lot worse.” Rude. I know it’s suppose to be a positive thing–thanking God for your working body parts and all, but think before you speak/post/comment/blog. Seriously.

Okay tangent over. 

Laelia went to school today and once again I am impressed with how her language is developing. We had Subway for dinner and at one point she leaned over and said, “ah aha ah AH AH AH AH!!” like a baby bird who will drop dead without a bite of food. So I said, “Say ‘Sandwich please!’ and I’ll consider it.” So Lali responded, “Sa-wash peees!”

Oh gosh, she sure doesn’t like mustard. You should have seen her face! Ha!

Grandma Christina and Grandpa had to leave early this morning because Grandma got really sick. I’m starting to feel it in my throat as well. Hopefully it doesn’t spread further. Charley was blowing his nose, but that’s about as much as colds affect him.

Laelia seems to be fussy, but not with a cold we don’t think. Although sometimes I look at her and think it’s a cold. She’s very white and covered in big purple and blue bruises from four attempts at an IV line and one IV line mark. It looks awful.

I remember when we were in the hospital and I saw her for the first time after surgery and she looked so white and pale. Like death. All of the color was out of her cheeks, and my heart sank as I looked into that pastey face. Then THREE different nurses commented that she looked exactly like me! Yeah we’re pretty white in my Irish family.

Laelia used a toothbrush all by herself to brush her own teeth for the first time in her life yesterday. She also learned to “go on a bear hunt.” She slaps her casts to make the walking noise and can say, “Oh no!” when her troop runs into something they can’t go over and can’t go under and have to go THROUGH!!! Then she screams along with the rest of us. It’s just the cutest thing. Everyone surprised me with this when I got home from Deaf Awareness Day.

Okay well we’re resting up today and both go back to work tomorrow. The weekend went by too fast. What are the odds of a snow day tomorrow?

Bleh. Last night was not fun. Charley and I quickly discovered that we couldn’t take shifts when she only takes her milk from him and her medicine from me. And since she has to take calories with her medicine, we did this together all night. Charley still went to work this morning.

Charley kept trying to call a doctor last night, but they didn’t return his calls even when he said he was an insurance company or doctor’s office, and the number we were given in case this very thing happened “closed” at 4:30 PM leaving no operator there to help. So then I called some numbers I was given after her first tendon releases when she was a newborn and one of those got through to a real person who got a doctor!

We got into our pajamas then back into our clothes several times last night as decisions were made to take her to the emergency room and then plans changed. (Usually in tune with the texts, phone calls and facebook discussions happening around us. :)) Apparently last night I had no Mommy instincts whatsoever and was just waiting for someone to tell me what to do. Usually if it were not surgery-related I would just keep her home. But after a surgery, I was too scared to do that. But the doctor finally called us back around 10:30 PM as we were leaving for the emergency room, and told us to stay where we were since they had sent us home with all the medication we needed to handle this apparently. And sure enough we looked in our magical bag they gave us and saw medicine for the shakes, the higher fever, etc. Her temp was down to 101.5 by then and the doctor was happy about that. He says it’s not an infection unless it’s still around three days later. Of course he called us after we already had her awake and ready to go to the hospital, so she was pretty unhappy with us. At 1:30 AM she got more medicine and was down to 101.1. Then at 5:55 AM she was down to 100 even. Her shakes were also gone around that time too. Her throat is sore from screaming at us, but she’s looking a lot better this morning.

Tired zombie mommy is going to take a nap now.

2:00 AM Update. Laelia’s not doing well. Her fever is down to 101.1, but she is now shaking and spasming. We gave her medicine for that specifically. Doctor is not too worried about the fever unless we can’t get it down more soon. He said she would have to have it another day or two before he would think it is infection. Her heart rate is through the roof though. She’s so pitiful looking–all teary-eyed, shaky and smelling like burned meat. It’s hard to see her like this.

Laelia has a fever of 102, and it’s been high for a long time now. We tried to call the number they gave us in case this happened and they’re closed. So, yeah, great, thanks guys. She’s covered in cold washcloths, a diaper and her cast, and that’s it, but I can still feel the heat rolling off of her. She just had more medicine a little early too. So now we are debating whether or not to take her to the emergency room. She seems to be in more pain now too. Weird relapse? I don’t know. We have to stay up all night with her, so we’re taking shifts. If it gets higher than 102, or doesn’t at least go down a little soon, we’ll rush her back to the hospital. I hope we don’t have to do that since moving her seems to hurt a lot.

PS: Her pain medicine is *suppose* to help with her fever, but it’s not working. (It also says not to drive a car while on this medicine. I’ll see that she doesn’t. *rolls eyes*)

Laelia did better at skipping breakfast and lunch than I thought she would. She just kept looking at us like we forgot something. Then when we packed up her stuff to leave, she really was barking at us. We were pretty good at distracting her during the two hour wait before surgery. We had to meet with the anaesthesiologist, surgeon’s fellow and head nurse. Then we changed her into her hospital gown and I tried to control my tears.

They asked who would carry her to surgery and Charley responded, “Her mother,” faster than I could say, “I think I’m going to throw up.” I went to the restroom and did just that. After that I got on a mask, hair covering and gown of my own. Then I carried my confused little baby into the surgery room. I set her on the table and tried to calm her as they put the gas mask to her face. I wasn’t doing well so they kicked me out while she was still crying and struggling against the mask. It wasn’t the way I wanted to leave things, but I was about to pass out.

The waiting began. Then everyone was distracting  me, although I demanded more than peek-a-boo and stuffed animals. We waited for a billion years which actually turned out to be a little less than three hours. Then the surgeon came to tell us how it went. He said it went well and he only had to use one pin. He also decided to only work on three toes once he was in there. We’ll see how that will turn out. Then he said that she should wake up in about 45 minutes and one parent could see her at that time.

Then we went back and waited again. This time I was going crazy. I had written on EVERY form I filled out that day that I wanted to be there the second she woke up (or even as she woke up), and was terrified that she would wake up and be alone and terrified.

Then almost an hour later they called on the loud speaker for one parent of Laelia Wesley to go to recovery. So I left and went to recovery. AND NO ONE WAS THERE!!! I said, “Hello?!” in the worst, shaking voice, and NO ONE answered. Then I ran around the hall looking for another room marked recovery. Then I stopped two medical-type-looking menfolk walking down a hall and started panicking as I said, “My daughter! Where is she??! She was in surgery and now she’s not and.. WHERE IS MY DAUGHTER?!!” They directed me down a hall which turned out to be WRONG! Then I found another medical-type women (who I yelled at), and she directed me down a hall that ended at a door marked “hospital staff only” with no way to open it without a pass. And at this same exact moment I heard some little ones crying on the other side, and recognized one of those voices as my daughter. (I turned out to be right, but couldn’t know it for sure at the time.) So I began to pound on the door like a crazy woman. And I mean POUND. I tried to tear the door apart with my bear hands as my dad and sister (who finally came out to help me) backed away with a scared sort of look. Then someone came out and directed me back to the original room (now occupied with people), and showed me down a hall I didn’t see before to a window I was suppose to divine was where I waited for someone to notice me. Then I was told in a harsh tone, “Stay here,” as that women disappeared down another door for hospital staff only. I think my Christian response was something to the effect of,  ”Like hell I’m staying here.”  So I followed her and pushed my way in. Then finally a nurse asked who I was here for (and said it like I was about to kidnap everyone in the room) and I said, “Laelia,” and they took me to my baby. Once I saw her I started balling. I got control of myself before I approached the bedside of my pitiful-looking child. When the harsh-toned nurse asked if I was “okay” in a tone that spoke volumes, I went off on a diatribe, “No, your incompetent, idiotic staff…” in a cooing tone while looking at my child and brushing her hair with my hand. I pretty much told the nurse off while hushing my child. I had Laelia in my arms within moments (which was hard with the wires and leg cast) and she immediately calmed down. Then the nurse said I needed to put her back on the bed so they could wheel her to long-term recovery, to which I simply replied, “No.” So the nurse then went to another nurse and switched out. (See, I’m scary!) The new, slightly intimidated nurse asked if I would like to be wheeled into the other room in a wheelchair while I held my daughter. That’s better. I made sure to be incredibly sweet and nice to this new nurse. “I like you,” I responded, trying not to smile because I would show too many teeth and scare her away too.

I guess Charley had the same experience as me when they finally called for other family. He came out and announced himself to the first person he saw with a clipboard, and was given a dirty look as that person took off. Then he just planted until we found him. Stupid system. Retarded!

The thing I had worried about was that Laelia would freak out when waking up without her mom. Well, sad to say, I was right. Her heart rate climbed so high that she worried the staff. When I came in and she saw me, her heart rate immediately went down. When I went to the other side of the bed to pick her up, there was a moment when I was out of view and all her monitors started beeping loudly as her heart rate jumped up to 190! (100-120 is normal.) Then when she saw me again and I lifted her into my arms, her heart rate dropped down to normal. Now imagine being asked to put her back in the bed after that! But I was a good girl and didn’t kill the nurse.

Once in the long-term recovery room I noticed just how out-of-it my baby looked. But she was alive. And surgery was over. And she was in my arms.

She had a rocky start after that. Her oxygen was too low (making everything beep and a doctor run in), then her pulse was too high. Well, REALLY too high. It jumped up every single time I stopped physically touching her. At one point I put her in the bed and noticed both my legs and the arm she had been resting on were all asleep. So I had to put her in the hospital crib, but I leaned my whole self over her with my other arm under her and rubbed her tummy and chest with my free, rather numb hand. (It was a weird sensation to remove my hand from my daughter’s chest and at that same moment have two monitors punish me by beeping loudly! Her whole system was only going to behave if I was loving on her.) The thing that shocked me was how much pain she was in. She was so confused and scared. It was hard to see. I’ve never seen her like this. Her oxygen was making me dizzy and my back was killing me, but I didn’t realize it at the time. Only when Charley came back from his trip to the apartment and took over did I realize I had been standing and hunched over in that position for five hours.

After that I threw up again and had other bad side effects from worrying. I’m realizing more and more than I’m a weakling when it comes to this stuff.

She said her first words around 8:45 PM. She looked at me clearly (she had been pretty hazy up until this point) and said something like, “Ga boo ma ba?” Then her eyes hazed over again and she was crying. Then around 9:15 she allowed me to put her sippy cup in her mouth and she took a sip. Her throat burned (they put a tube down it that they didn’t tell us about) so she didn’t like that. Then they brought us some apple sauce and said she needed to get something down or they couldn’t release her the next day. So it was stressful when she couldn’t get anything (food or drink) down until eleven hours later!

The next day we got books from her room and some other foods from home and she did much better. She was able to get down the apple sauce from the night before and also some crackers. That’s all we needed to be able to give her the oral medication… that she spit out. *Sigh* But then we tempted her with two hours of Elmo (kill me), and she did even better with the medicine. Elmo got grating by the end, but since she doesn’t watch tv at home, it was a special treat that kept her attention. Well, that, and reading her favorite book a literal 16 times in a row. Charley and I switched off for that one.

Then we got to take out her IV and go home! She cried a bit in the car, but fell asleep. For some reason she didn’t like right turns. But we were so thrilled to get to take her home! When we got home we fed her more, more oral medication too, and had group nap time. It was great!Mommy, daddy, auntie Em, Grandma, Grandpa and baby all took a nap. We were tired! She was back in her own crib and was looking less pasty. Her lips were pink again and she had real clothes on! It was a sight for sore eyes.

We fought off a bit of a fever after coming home, but it left as soon as it started. She ate her dinner fine. She has sat on the couch with her leg elevated while everyone takes turns distracting her since then. For the next surgery when the grandparents are gone, I may elicit help with this. It takes a lot to distract a post-surgery baby.

But she’s doing so much better now that she’s home! She’s doing so well. So so well! She laughed! And she can focus her eyes! And she can eat! And she hasn’t thrown up once! And she’s swaying to some music right now. And she’s holding her stuffed kitty. And she’s telling us what sounds different animals make. She does cry when we move her or lift her, and she is fussier than usual, but I’m so happy with how she’s doing. I really thought after our rocky start that she would not be doing well. I was thinking the worst. I’ve been feeling her heart and it’s normal. She got a bit more out of her lungs too. She’s kinda raspy and the nurses and assistants asked me if she had a cold before surgery… um, no, I’m not that stupid. But then the doctor informed them and us that this was normal for post-op. We cheer when she can cough it out. We cheer when she eats. We cheer when she says anything. She’s pretty spoiled. And that’s how it should be.

I honestly have no earthly idea how we are going to do all this again in two weeks. But that’s still the plan. And her left foot is worst off so it may take longer. I’ll be glad when it’s all over with. But at least this next time I’ll know exactly where to go for recovery. And Charley will be the one to carry her into surgery. And we’ll know what stuff to bring. And maybe we can borrow a computer so we can give better, more timely updates. Lots of things to plan.

On the way to the hospital.

Everybody is excited except for the one who missed breakfast and lunch.

Wants food, sick of waiting.

Laughing and being distracted.

Gowned.

Right after surgery.

Listening to the nurse.. well some of us.

Not happy.

Hospital bed/crib… something about this was just disturbing.

She got this story 16 times in a row.

Oxygen and IV and more distractions.

At home!!! And the best she’s looked in the last 24 hours!

Only one pin in her foot and look how straight the bones look!

Okay, wow. Sorry I wasn’t able to give an update sooner. They turned my phone off at one point to let her sleep and I see I missed some calls and texts. I was pretty distracted. Laelia’s surgery went well. They did her “good” side first so surgery was easier. She only had three toes worked on rather than all five (little toes were “good enough” they said), and only one pin instead of several. Those are things they don’t determine until they’re in there getting their hands dirty, but we’re glad it went well.

Laelia had high anxiety for the first nine hours afterwards which the nurse said was probably because she was non-verbal and stressed out. She doesn’t know why she’s in pain or what will hurt her. Her oxygen levels were “too low” so they have her on oxygen, but she didn’t know if the tank would hurt her. Her pulse is constantly shooting between 160 and 180 (and it should be between 100-120).  Everyone has asked if she had a cold or some other illness before surgery! No!!! What??! Her breathing is raspy, but I swear she was 100% perfect before surgery. She also freaks out if you break physical contact. But I guess the surgery went well and these are some post surgery hurdles that many parents deal with. I think it will be better if we can take her home. Since she’s not eating or drinking yet, they won’t release her until she can take oral medicine.

Sorry visiting didn’t work out very well. She just wasn’t doing well. We’re letting her rest now.

I’m just picking up some things at home and rushing back. So I’ll have to tell you all about how I almost killed some nurses later. Thanks for the prayers and positive thoughts our way! We appreciate it! I honestly don’t know if we can do this again in two weeks. We may have to put it off. Keep the prayers coming!

~Alexis

PS: Charley called and said she took some apple sauce, so that’s a good thing. We’ll try the oral medications in a few hours!

Thank you Adam and Chelsea for coming over with dinner and dessert and stuff to bring to the hospital! And thanks, Adam, for feeding Laelia her broccoli even though it smelled bad. It was great to be so distracted!

Dad and Christina showed up with (and this is a rough estimate) about 300,000 toys and stuffed animals. I guess after Grandpa passed away, Grandma gave a lot of his stuff to Dad, and Dad had to make room for it by cleaning out my old room. So he came over with several bags of treasures from my childhood. They’ve been good and distracting. At one point with everybody laughing and talking, I forgot that my stomach was in knots until I tried to eat something else.

Laelia got her new splints this morning and went to bed with them tonight. She’s looking spiffy. I think she thinks it’s her birthday or something. Lots of family and friends and toys and late bedtimes. She even got some pizza, mac and cheese and crackers for dinner. I figure it balances out since she doesn’t get any food tomorrow.

Tomorrow I’m going to cut her fingernails and bathe her again. We’ll take turns eating breakfast out-of-sight upstairs. Then we’ll load her in a car around 10:45 AM and head over. I want to remember to take before pictures. I probably should pack a bag tonight, but I’m so tired and out of it. Still waiting for my sister’s flight to arrive. Hmmm… I may not make it. God, protect my baby girl. I just feel so sick to my stomach. Maybe I’ll just sleep. ZZZZZzzzzzzzzzzzzz.

Well, it’s almost six in the morning and I’m going crazy. I left for work early since I didn’t have to be at Laelia’s splinting appointment this morning at OT. I can’t believe her surgery is tomorrow! But it’s not just one big event that she needs to “get through,” it’s several hospital visits, two hospital stays/surgeries and months of pain management. It’s like knowing you are going to have the stomach flu for three months. You’d want to get through it, but you wouldn’t want to start that process either. I got delirious yesterday at the thought of canceling her surgery. I daydreamed about actually announcing that it was off. But then I would just worry like this another time, and I’m already sick of worrying. I feel like I have three fists punching me in my stomach, in my chest and in my throat. They’re making me sick.

When we were going to get Laelia serial casting back in the day, I remember one time while waiting for our turn there was a little six-year old girl in a lower body cast. She had been in an accident and needed surgery. Now she was all healed from surgery and getting her casts off. She just kept crying and crying that it hurt so bad. She couldn’t move. Her whole body was rigid and her face was distorted with pain.  So after all the heartache of surgery and recovery and casts and general awfulness, it wasn’t over for her. Laelia is scheduled to get her casts off before Christmas, but that doesn’t mean her recovery will be over. That doesn’t mean our nightmare will be over. I just have to get through this year!

I cried hard last night thinking about if she didn’t come out of surgery. How I would regret not canceling it. I thought of all the things I would miss. Charley and I talked about her chubby grin we love so much. We don’t know how we would go on without her. And although I allowed myself to grieve that possibility, I knew I couldn’t think about it for long. The whole thing is just so scary for me. I wonder if other parents would feel this way.

It’s hard to enjoy her. When she smiles at me it breaks my heart. I wonder if this is the last time she’ll smile at me. I cried through feeding her dinner last night until Charley came home. It’s awful.

Well I’d better start my day. I’m working today until my family gets in town.

That’s another thing. I’ve been worried that I planned my life poorly by thinking long term. Maybe I should have been thinking short term. I go to a job. I send Laelia off to school (and to other new experiences). I go to the gym… Maybe I should have been a stay-at-home mom who focused on cramming several years worth of memories into just under two years of being with Laelia. If she doesn’t wake up I’ll have that regret. But if she does pull through this fine, which is, um, definitely the much more likely outcome, then of course I did the right thing by thinking long term. Actually I may have several years of memories already. I have a gajillion photos.

I’m just making myself crazy. And since I like to blog, now you all know I’m nuts.