They weren't lying when they said that Jiangxi girls are spicy girls. My girl is VERY spicy. When she does not get her way, she scrunches up her face and screams in frustration. Sometimes she'll shove whatever it is away if that's not what she wants. Before she goes to sleep, she howls in anger because she doesn't want to go to sleep. I think if she could hold her breath and stomp her feet, she would. I know this tenacity is what helped her make it. I wouldn't want her any other way. But...Lord have mercy, it's exhausting!
She's started with the night terrors again. She had them the past two nights. I'm praying she doesn't have them tonight. It took over an hour to get her down. She actually let me rock her a little around the 45 minute mark. I think she was upset that she couldn't fall asleep. If she would take off her bracelets maybe that would help...it would at least help with the noise of them clunking against the rails.
We had our Physical therapy and Occupational therapy appointments today. They were checking her out and it does seem she has some delays. Both therapists were saying how she's like super bendy, like Gumby which is a little of why she has some issues with her walking. When she's awake, she doesn't do the whole roll over from back to tummy but she does when she's sleeping and she has some balance issues too. My mom will be taking Grace to her therapies on Monday because I go back to work next Tuesday. I hope it will go well.
Monday, August 31, 2009
Posted by Jamie at 10:56 PM
Friday, August 28, 2009
Grace went to see Dr. Glasow the pedicardiologist on Wednesday...yeah, didn't go so great because she wasn't having any of it. She didn't want an EKG, Echo, pulse ox or anything. She was just mad! I can't say I blame her...I would be too. In the end, he decided to let me be the judge of how she's doing and if I see her getting worse to call...otherwise she sees him again in 3 months. YEA! We went to see Dr. Oliver, her pediatrician yesterday because girlfriend is not eating like she had been. Now, she LOVES Dr. Oliver and she doesn't scream bloody murder when she sees her. She even let Dr. Oliver do a strep swab. Turns out that the reason most likely she's so fussy, clingy and not eating is that she's getting 3 teeth and also that she's just a toddler! Will this child ever quit teething? She has not stopped getting teeth since Family Day on June 7th. One of these days she won't have to wear a bib to collect the oodles and puddles of drool. The poor baby!
And just a random thought about toddler eating...does it make me a bad mother that for the past two dinners, my daughter has eaten french fries and strawberry pediasure? Yep, Grace is not wanting the chicken or meat, just the fries. Good thing she's underweight. I was thinking all of the work Dr. Hussain and Dr. Calhoon did to fix her heart and I'm clogging up with french fries! Yikes...better find other alternatives.
Posted by Jamie at 10:44 PM
Monday, August 24, 2009
Wow! Where does the time go? Grace is officially 20 months old today. She's 4 months from being a big 2 year old like her friend Holly! She is a walking machine, except she kinda walks like Godzilla when he's destroying Tokyo. She keeps getting better and better each day. The cool thing is that she's not coughing or is out of breath. That makes the both of us happy.
Today was the first day of school and I wasn't there. It was weird. I have been feeling a little off...actually a lot off. For 14 years, being an educator WAS my identity. I haven't missed the beginning of school in my whole career. I felt like I was playing hooky and I felt guilty and also at the same time, I felt left out...not that I'm not loving being with my girl. I'm just having some adjustment and identity issues. I truly do love what I do and I love who I work with so I think that makes it even harder. I only have 9 more school days before I go back and then I'll probably be wishing I was still with my girl. She does keep me on my toes. Her latest thing is hair things...she wants like 5 bows/barrettes in her hair at the same time. She still won't take off her bracelets (actually they are the toy links) even in the tub or bedtime. She will scream bloody murder if you even attempt to take them off. My girl's a girly girl. I think I was too at that age. Rumor has it that I would only wear dresses. Oh well, like mother like daughter.
Posted by Jamie at 9:35 PM
Sunday, August 23, 2009
Posted by Jamie at 3:21 PM
Thursday, August 20, 2009
81 you say? Yes, that is Grace's oxygen level. BG (before Glenn procedure), she was satting in the 60s. Her chest x-ray was super great. We won't have to see our favorite cardio-thoracic surgeons until the next surgery. We'll miss them because they rocked. The good news is that Grace is feeling stronger and better and is actually walking without tiring and she's more active than ever. I think she feels less intimidated by Hope the dog. And she's sleeping through the night (knock on wood!)
The downside of the whole hospital thing is that the traumatic events have left some scars. Medical people make her scream. They can do something not painful like x-rays or taking weight and she screams. She also screams when I change her diaper and changing clothes and just holding a wet washcloth near her. She has also become very sensitive to the word "no" and "don't" even in a nice tone. She will burst into tears. She is okay sitting in the bathtub but not washing her hair or water falling down her back. However, I think with time, it'll all get better. We've weathered worse storms and the same battles and we've always survive and make lemonade out of lemons. I am just thrilled that Grace feels better.
Posted by Jamie at 10:47 PM
Tuesday, August 18, 2009
Posted by Jamie at 9:38 PM
Monday, August 17, 2009
It was a traumatic day for my little girl. It turns out that the person who put in the right chest tube stitched it in super tight. It was incredibly painful for Grace when Kara was trying to get it out and now when any doctors or nurses approach her, she screams this terrified scream. It's one of panic and sheer terror. I can't even calm her down with bubbles, lollipop song (her favorite) or hugs and kisses. It breaks my heart. I'm so scared for her tomorrow if she gets out the second chest tube how she's going to do. She let people do whatever they wanted to do to her before but now that this has happened, it's like we're back to square one of the fear. I can't blame her. I wish I could pick her up and hold her close but those dreadful tubes don't allow it. Just say a prayer for my girl that tomorrow will be a good and less stressful and painful day and that today will be a distant memory for her.
Posted by Jamie at 9:57 PM
Posted by Jamie at 11:12 AM
Saturday, August 15, 2009
Posted by Jamie at 10:20 PM
Friday, August 14, 2009
Posted by Jamie at 3:06 PM
Thursday, August 13, 2009
This evening we got to move to IMC, which is step below PICU and it's our last stop on our journey. Grace woke up today and was more herself. She liked it when I blew bubbles and visited with family and friends. She actually got to eat real food this evening. She was so loving the instant mashed potatoes but the mac and cheese congested her.
Besides her central line, Grace got out her main chest drain tube that was below her incision. I also accidentally broke the plastic part of the newest chest tube that they put in yesterday when I was holding her so they had to take out that drain tube. I was upset I did that but so far so good (knock on wood). She peed on me in retribution! I'm hoping it was a blessing in disguise. So, we're down to one chest tube and the stupid canula (the oxygen nose thingie)...the last chest tube is supposed to be out tomorrow. My sister, who is also a nurse at this hospital said that they won't let her go without pooping and we all know that is not one of Grace's stronger points. So, I'm back to praying for poop again (just to be on the safe side) besides all the rest of the stuff.
I'm just so glad to be out of the PICU. I found out they had like 9 heart babies, and I mean mostly little babies. They actually performed open-heart surgery in the room next to Grace's because that little 5 day old baby was so unstable. It was like a car wreck that you couldn't help but look at what's going on. They had to leave the wound opened. I have been saying a prayer for the young couple and their baby. There was also a young man who had been there for over a month...he had been in a coma from an acute asthma attack. He woke up the other day but something happened today...everybody was running to his room and I saw an alarm on the monitors. I'm so glad to be here with less drama and more privacy...our room is private and it has its own shower and bathroom...YEA! That makes me one happy camper.
We are so greatful for everybody's love, support and prayers. Thank you and please continue as our journey in the "heartland" is not quite over. Grace & I love you all so much!
Posted by Jamie at 9:55 PM
Posted by Jamie at 8:00 AM
Wednesday, August 12, 2009
Grace had a better night. I actually slept too. She did start getting agitated around 4:30ish this morning. But, she recovered from her desatting (when she goes below 70 on her oxygen level is desatting). She has been crying and getting upset on and off since then. Two things that have her really upset is the tubes and then being restrained. I can't say I blame her. I am feeling better since I got a lot more sleep last night. The doctors and nurses here and other health care professionals really are great. I know she's in good hands. This morning she drank a little pedialite (she had to have it in her bottle with the huge nipple) and she was mouthing Hope, well, the "pah" sound like she does. It still amazes me that the first word she has chosen to attempt to say is the dog's name who freaks her out still.
They did tell me most likely they are going to have to put a chest tube in her left side to drain the fluid off of that side. You know, I'm all for it since it really has helped her when they did the right side. It just sucks for her because it's another tube and another mini surgery. I am probably going to go home for a little bit today so I can take a shower and showers work wonders! I know that I need to take care of myself so I can take care of my girl.
Thank you all for your kind words, support, prayer and love. We need it and appreciate it. Grace and I love you! I'll keep you updated
I am probably going to
Posted by Jamie at 8:09 AM
Tuesday, August 11, 2009
We had a setback this afternoon. Grace's oxygen level wouldn't elevate. It was staying in the 60s and 50s. What also didn't help was that she was agitated. It became grand central station in her room as it got worse and worse. They had to do chest x-rays and an echocardiogram. They tried a variety of things and discovered there was fluid on her lungs. They had seen it earlier but didn't think it was a concern. I guess it was or it became one. They suspect that it might have caused some of the problems. So, we had to leave and they had to knock her out and put in a chest drain. They might have to do another on the other side. They are concerned that once she wakes from the meds, she's going to go back down and then they will most likely have to put her back on the respirator. It has been a very challenging day. I hated the fact that I had to help restrain my child when she was flailing and trying to get the tubes off her face. She's so scared and doesn't understand what's going on and it kills me. Sandra is right that I should go into the bathroom, get a good cry and take a nap...unfortunately, I can't nap because I'm a little anxious and I'm afraid if I cry, I won't be able to stop. Just say a little prayer that it's a small bump and all will be well tomorrow. I'm just taking a big ol breath and taking it an hour at a time.
Posted by Jamie at 5:01 PM
Posted by Jamie at 9:47 AM
Monday, August 10, 2009
Posted by Jamie at 2:54 PM
Grace did as well as she could. I was proud of her. They kept poking her because she was having a blood issue. They had to scrap the original plans and do a glenn procedure which will require another open heart surgery possibly next year. I'm still kind of in shock. She is already done with her surgery. They are closing her chest now and then they'll take her to ICU. I'm not sure how long she'll be in the hospital now. Just say a little prayer for her that it is the best thing and she'll do okay.
Posted by Jamie at 11:02 AM
Thursday, August 06, 2009
Posted by Jamie at 10:35 PM
Wednesday, August 05, 2009
I got a call from the doctors saying that the surgey has been postponed until Monday. There is a critical baby who needs the surgery on Friday quite badly. Let's say a little prayer for that baby and hope he/she gets through it okay. This gives me and Gracie more time together. She is doing so well.
Today she spent time with her Aunt Jackie and cousins. She loves them all so much. She brightens like a little light bulb with them and they are all so good with her. She has also discovered that she likes to drink soda (yes, I said the bad word) and she likes to brush her teeth. At least one will combat the other.
So, on Moday, if you are a praying person, say a little prayer for my girl that it will go well. If anything more changes, I will post again.
Posted by Jamie at 10:16 PM
Tuesday, August 04, 2009
Okay...I have been very neglectful in my blogging...it seems that when Grace goes to bed at 9 p.m., I want to catch up on my DVR'ed TV. So, last Thursday we finally met with one of the surgeons. Can I say how lucky we are to have these surgeons...they rock! Okay so here is the low down...they have to go in and repair the two holes in her heart (one in the pumping and one in the collecting chamber). They also have to repair the one shared valve and make it two valves. That will take care of the ASVD part. Then they have to build a conduit from the heart to the lungs. This will help her be less blue. She will most likely have to have surgery again when she gets older to replace that conduit. The surgery will be on Friday around 9 a.m. We have to check in on Thursday around 1 p.m. to do all the testing and pre-op stuff. The surgery will take about 4 hours and we will be in the hospital for about a week.
Today Grace learned how to use a straw. She was so proud of herself. There's something new every day. The other day she realized she had peripheral vision. She thought that was cool when I would pop in and out of her view without looking directly at me.
Posted by Jamie at 9:34 PM