Wednesday, March 24, 2010
We got your new chair yesterday and LOVE it! You can be up high to sit at the table or down low towards the floor, or anywhere in between. The high/low base has wheels for around the house, and we also have mobility base for out and about. An optional tray allows you to play with toys and use your hands. Your feet sit flat on the platform so that you can practice weightbearing. It supports you so well, and you did an awesome job holding your head for two hours in it this morning. Bubby is super interested in it and wants to know why you get a cool new ride and he doesn't.
Liam took a long morning nap, so you and I made Daddy's favorite banana nut muffins. It was so much fun to wheel you into the kitchen with me, and have you close to my level. Usually, I would have to leave you in the living room, or put you in a little bouncer on the floor. Not only were you not well supported, but you could only see my feet, and I couldn't interact with you much at all. But this time we jammed to your iPod, and often I would grab your hands to make you dance. You would just laugh and laugh! This chair is going to be so great for you.
Already I can tell you feel like a big girl. When it was time for your nap, you immediately started crying when I put you down. It was as if you were saying that you have been lying down for almost two years, and ain't gonna lie no more!
Monday, March 22, 2010
Today was filled with a trip to TCH for a follow-up appointment with Dr. Louis. We talked about several ideas and concerns I have about you. Here are just a few.
1) A major problem is that you have lost weight. You are now down to 14.5 lbs after almost being up to 15. We are going to continue feeds as normal for the next month and give you a chance to regain what had been lost from being sick. If we don't see significant improvement then we will have to adjust feeds.
2) We ordered oxygen for you at night for when you O2 sats drop below 92. It doesn't happen every night, but when it does you hover in the high 80's for hours. Daddy and I have to wake you up until you are as alert as can be expected for whatever hour it is until your sats reach 94 (if we are lucky) and then lay you back down. Inevitably, as soon as we get back in our bed the alarm goes off again. Since you lay on your side at night, we are hoping just placing the mask next to you will be enough. I am guessing you won't tolerate it on your face at all.
3) Cholesterol levels. Goodness. So you were born, it was 22. Jan of 09 it was 34. January of 2010 it came back 4.9. We thought was some crazy fluky thing so we retested. This time it came back 3. Say what?? Three? Tomorrow I am going to have to get on the SLOS forum and talk to the specialists and see what they make of that. It should be over 100 to be considered normal. We have a long way to go. But on the positive side, your 7-DHC number has almost been cut in half, and that is even more important than total cholesterol. In the meantime, we are doubling your dose.
4) Your wheelchair is coming tomorrow, which we are thrilled about! So we got handicapped parking plates and a placard. Whoohoo!
5) Your breath has not been good lately, and often that can be a sign of infection. So I mentioned it to Dr. Louis who looked at the CT Scan we took while in the hospital to look at your shunt. And sure enough, your middle ear and sinuses have some fluid. So you will go on Augmentin for 10 days.
6) Dr. Louis wrote a script for Zofran, an anti-nausea medicine used for chemo patients. We are hoping if you have a spell like this again, it will keep you from getting so massively dehydrated.
7) I brought up congestive heart failure since it is a leading cause of death in SLOS kids, but I am not sure causes congestive heart failure. I still don’t know, but we are going to have an echo done for good measure.
Those are the highlights. We got a lot accomplished and hopefully will find some more clues as to what happened two weeks ago and how to prevent it from happening again.
Tomorrow morning your chair comes and that means you will be sitting up big most of the day from now on. So sleep sweetly precious one. You are going to be working hard tomorrow!
Friday, March 19, 2010
I had planned on filling in the holes of Daddy's blog with my perspective of the hours leading up to and resulting in our trip to the ER and stay at the PICU. I just don't have the energy though. The whole experience was so exhausting--physically and emotionally--and I am worn out just thinking about it. And he did a great job explaining everything. So for now, I am going to leave it at that.
We left the hospital Sunday afternoon. Originally we were told we would probably leave closer to the next Wednesday, but you were doing so well we were discharged early. Everyone was so grateful to be home. Daddy didn't leave the hospital since we had arrived on Tuesday. Liam spent most all of everyday with Honey or Grammy until I came and picked him up each night. And going back and forth didn't leave me much time with any of the three of you. We all missed each other a lot.
This week has been very rough. Monday was the worst. You cried non-stop and I could hardly blame you. You were still getting over the Adeno virus that they suspect led to your massive dehydration and shock (I have my doubts). So you had a fever. Your bottom was bleeding because you were constantly pooping and I couldn't keep your diaper clean. Whenever I changed it, you would bite your arm in pain. Your top molars are coming in, and your eye teeth are coming further down also. Your throat was sore from being intubated for three days. With all this going on, I couldn't decide what was hurting the most, so I just treated everything as best as I could. But the best fix was just to hold you all the time. Which I gladly would have done. Except...
Liam was super clingy this week also. He had fun at Grammy and Honey's but had never been away from me for that long in one day, let alone 3 days in a row. He wanted to be held all day also.
I am pretty good at holding both of you at the same time when everyone is happy and calm. But you weren't happy and he wasn't calm. So I would hold you and let him cry for a bit, then hold him and let you cry. At 3:30 I called Daddy and told him I needed him to come home STAT (we looked up what that meant while in the hospital after a doctor ordered a pacifier STAT for a crying baby next to you - Sooner Than Already There). Thank goodness the rest of the week Honey and Grammy took turns coming for a couple hours a day to help me keep you two happy and myself sane.
Over the week, Bubby transitioned from crying if I wasn't holding him, to crying if I wasn't talking to him and looking at him, to crying if he couldn't see me, to his normal self. It wasn't until yesterday that you started making a little turn for the better. Didn't cry as much, but still overall very fussy. Today you were feeling much better...even to the point of giving smiles without making me beg and talking a little. I am praying by tomorrow you will be feeling close to 100%. Your bottom is still very sore, but is on the mend.
It's been a chaotic and tiring couple weeks. But as my mantra for the last couple weeks goes, "It's part of it." I feel like I said that over and over. Blowing our budget for the month because we pay a fortune for parking gas and meals while in the hospital? It's part of it. Missing you and Daddy? It's part of it. No one gets any sleep? It's part of it. Taking vacation days for this? It's part of it. The "it" I am referring to is having you in our life. But I would much rather go through these things than not. Because, celebrating the tiny things you accomplish that others might take for granted? It's part of it. Having the sweetest cuddle bug there ever was to snuggle whenever I want? It's part of it. Getting a kick out of your sense of humor, and the way your face lights up when you laugh? It's part of it. Loving you more than I could possibly imagine, and the joy I feel when you are able to show me that you love me too? It's part of it. These sweet moments by far outweigh and outnumber the scary and exhausting ones.
Next week will be much better for all of us. Life is a roller coaster. It's part of it.
Thursday, March 11, 2010
When we got there I dropped off you and your mother at the ER entrance and took your brother to park the car. When I returned to the ER, I could not find you or mommy anywhere, so I called her to figure out where you both were waiting. A man asked me who I was looking for, and when I told him he took me right to you both. I walked into a shocking scene with 8-10 nurses, doctors, and other medical personnel crowded around you trying to place an IV and bagging you to help you breathe. You were scared and crying out, and Mommy was crying too. I could not help but cry with you both as I watched you in pain and frightened. It seemed as though your situation had escalated dramatically since I had dropped you off, and we did not know what to think. All we could do was pray through tears, and trust God to take care of you.
They took you straight to the OR after they were unable to place an IV, where they intubated you and then placed a central line in your leg. God was taking care of you the whole time, and he sent some friends to help comfort us and check in on you after surgery. Shanna, Elaine, and Jenni from church came, and so did Grammy and Mema. It was so nice of them to come see you so late in the evening. They love you so much baby.
I slept by your side most of the night, while Mama took care of Liam at home. You did fine through the night and all of your vitals remained stable. Mama came back early the next morning to check on you and so did Honey. Around lunch time Mr. Scott from church came to visit you and he prayed over you with me by your bedside. There are so many people praying for you, and they all love you very much. Even after all you have been through, you are still such a fighter and you amaze me with how strong you are.
We are still waiting to get the results on several blood tests that will hopefully reveal why you got sick. Until then, according to the doctors we cannot extubate you. Last night you were doing fine, and the nighttime doctor said that she would push to have you extubated sometime today pending how you did through the night. Unfortunately, you woke this morning swollen and wheezing. The daytime doctor said that if the breathing treatment works today, and the wheezing goes away, then we might be able to extubate you this evening. We are hopeful, but we know that sometimes these things take longer than expected because they want to be cautious with you.
Now we just wait. Mama took your brother to Grammy’s house this morning so she could devote her attention to you today. He misses you, but this sick hospital is just no place for him. So for now, it is just you me and Mama, kind of like the old days.
Monday, March 8, 2010
It is exciting for you that Liam is starting on solids, because it gives time to practice eating. Most days it is survival mode to get everything that has to be done checked off the list. Since the pump does a great job giving you your nutrition, eating orally doesn't always make it to the top of priorities. But now that Liam has to eat solids, you get to try daily also. He just shares a couple bites with you. Hopefully you can learn and grow together on this for a little while.
This evening we specifically worked on drinking with you. I used a syringe to squirt a few drops in your mouth a time. You drank about 3 mls in 5 minutes. For anyone else that would be painfully slow, but I was thrilled with that. In fact, you were too! Here you are a few minutes after we were all done, just giddy with yourself.
Sunday, March 7, 2010
Thursday, March 4, 2010
You are getting so good at your signs baby. I have always known when you try to say Mama or Dada, but to anyone else it wouldn't be obvious. Here you are clearly doing the sign for Mama! (Yes, silly Mommy recorded it sideways.) You understand much more than anyone gives you credit for, and I love to see you able to communicate back with signs. The only other one you know right now is "baby" for Liam. You can't do it yourself, but you smile big when I do it for you.
When I was in college I took American Sign Language as my foreign language. I had always felt a calling to learn and was never sure why. I considered maybe God was preparing me for something in my future, possibly a deaf child or loved one. So when you were born with perfect hearing but practically no vision, I was confused. I joked that I should have studied Braille instead. But God doesn't make mistakes, and He knew that sign language would be your only source of "verbal" communication. And you are using it so well already. It is so awesome to see how God works things like that out.