Saturday, June 27, 2009

I Really Do Promise

That I blog in my head and it never makes it here. The latest one that I blogged in my head was for last Monday, June 22nd. And it went a little like this....How In The Heck Did I Get A 6 Month Old???? I mean really, this sweet baby is growing up way too fast for this mama! On the health front, she is doing really really good considering what she has been through. We are still battling some massive reflux and are scheduled to go to the GI Specialist on Monday but I don't really think he can add anything to what we already know or are already doing for her. She gets Zantac two to three times a day and Prevacid when it is really bad. On the developmental front, she is sitting up now unassisted for long periods of time and mostly catches herself when she is falling, she can roll from her back to her stomach and sometimes loves to be on her stomach/sometimes not. When she is enjoying it she looks like she is swimming and it is the funniest thing. Nothing is touching the floor but her belly and her legs and arms are going ninety to nothing in mid-air. She is chewing on anything and everything she can get her hands on but still no teeth. She loves her baby food. The formula-not so much! If I don't think about it, she will go all day with only 2-3 bottles so I have to remember to try to get those in when I can. She is also really interested in what we are eating and grabs at our plates and cups. If I happen to be holding her when I am eating she tends to think the bite coming towards us is for her and not me. We are working on the sippy cup and she loves her some Vanilla Wafers. She has become a little leary of strangers/strange places and especially of men. I attribute that to all the men doctors she has seen in such a short period of time. Others attribute it to the fact that she and I spend so much time together that she doesn't want anyone but me. Oh and she has just recently started holding her arms out to go to someone else. There's just so much that she does new on a daily basis that it's hard to really put them all down on paper...or the blog. I did find my camera batteries yesterday so hopefully I'll get some new pictures soon.

I'm enjoying my time at home with Bailey so much and the summer is flying by. But it sure does make for long days and weeks for me when I'm used to being at work and not just sitting at home all day playing with a baby. And Bailey and I really are getting way too attached to each other. She'll be starting daycare for a day or two a week in the next week or so just so she can get used to going back and it won't be such a shock for her when I do go back to work in August. She is the type of baby that watches what other children are doing all the time and loves to be entertained so I'm not worried about daycare, just that she'll cry when I leave her and we certainly don't want that now do we??

Speaking of work, I got everything squared away with my Mississippi Master's teaching certificate. When it was all said and done I am now certified and Highly Qualified to teach anything special ed birth to 12th grade in both Mississippi and Alabama. I was rather proud of myself for that.

Well, I think we are about to take Miss Bailey swimming. Sid's at home this weekend and he always has us on the go. Maybe I'll remember the many times have you heard that???

Friday, June 12, 2009

Early Intervention

We are done with it. Miss Bailey "graduated" yesterday at thier end of the year ceremony. I have pictures but for some reason cannot get them to upload. But at almost 6 months she has well exceeded what she should be doing for her age and therefore, fails to qualify for further services. This is sort of bitter-sweet because I'm so very glad that have determined she is ahead of where she should be developmentally but I cannot describe the help that these ladies in this program gave to me and Sid and Bailey at a time when we needed it the most. Not to mention that is saved us thousands of dollars to get feeding therapy through EI instead of going it alone and relying on insurance to pay. Just some FYI, your insurance policy has to say that it pays for speech language services in order to pay for something like feeding therapy and if it doesn't then you are left to pay out of your pocket. I have no idea if our's pays or not, but I'd been willing to guess it does not. But EI picked up the the tab for that expensive life-saver and we are so very grateful for that. I mean it's one of those things that we would have done either way, she had to have it, rather it was paid for by us or insurance or whoever. But given that EI and their providers were eager to help us and were there for us when I discovered her feeding problem, I mean having them and their support has been priceless in my opinion.

In other news, and I meant to post this on the actual day. But Pap-Paw had a birthday Monday. Was it 56 Pap-Paw?? No really I believe that he turned 86 years old and is still just one of the most important, sweeetest, and bestest men in my life.

I do have several posts up in this head of mine and you'd think with all the time that Bailey and I have been spending at home I'd have time to type them. But typing is one of those things you have to have two hands for, or I do anyway. And it seems one arm/hand is always holding/carrying a sweet baby girl. So anything that gets done while Sid is gone can only require on arm/hand. It's amazing what you can do with only one hand. She has started to cry for me some when I leave the room and Sid has her, which does make a Mama's heart proud but's going to be rough rough rough come August when she goes back to daycare. Bless her little bones....and mine!!

Thursday, June 4, 2009

P.S. and a Birthday Shout Out

Sid does not remember Dr. Carron saying anything about Bailey having to be scoped again so I very well could be making that up. And Bailey weighed 14.6 pounds yesterday with her clothes and new sandals on. So we are saying she weighs about 14 pounds now. She has gained a whole pound since this ordeal started. I just can't believe how big she is getting.

Aunt Maggie Ellen's birthday is today sooooo Happy Happy Birthday to you Aunt Maggie. We love you so much and can't wait to see you tomorrow!!!

My grand daddy's birthday is coming up next week too and I wish I had thought ahead of time and gotten him to Baptize Bailey this upcoming Sunday while we are in Alabama. But since I'm no good at planning I guess it will have to happen another time.

Wednesday, June 3, 2009

Follow Up Doctor's Appointment

We took Bailey back and it's been two weeks since the emergency surgery. She is doing really good and everything looks and SOUNDS great. Thank the Good Lord Above!!!! We don't have to go back for three months unless....and Dr. Carron will eventually want to scope her again to make sure it has healed ok and that it is growing with her. But we don't know when that will be.

I hope to be taking Miss Bailey swimming in the morning and maybe I'll even charge my camera batteries for a picture!!!

Tuesday, June 2, 2009

And Now For The Rest Of The Story....

This continues the saga that started post before last. I left off on May 8th when Bailey was sedated in the OR for the firs time and it was discovered that she had Subglottic Stenosis, a narrowing in her airway. We spent May 9th- May 11th dreading what was to come on May 12th, her big surgery to correct the problem.

May 11th - Monday, we drove to Jackson Monday afternoon to meet Mom and Dad, where we were all spending the night by the hospital since we had to be there early again and couldn't feed her. Jackson is just too far a trip to drive that early in the morning with a hungry baby so we didn't want to chance it. We had a good night visiting and eating together, but it was still depressing knowing the next day I would hand my baby over to strangers for care for at least the next 5 days.

May 12th - Tuesday, the big surgery day. Bailey is taken to the OR around 7:00 a.m. and this is what they did: Dr. Carron, the ENT, made an incision in her neck about 2 inches long and took a piece of cartilage from somewhere in there, then he pretty much opened up her airway and stinted it open with this piece of cartilage, sewed her back up, put in a vent tube, sedated her and sent her to the PICU to recover until Friday morning. She looked much better to me than I expected her to look when she came out of the surgery. It took about 2.5 hours and Dr. Carron said everything went as well as expected.

May 13th and May 14th - Wednesday and Thursday, Sid and I stayed by her bedside in the PICU from 8:00 a.m. until about 9:00 p.m. both of these days even though she was sedated and we couldn't hold her. She would wake up from time to time and I wanted to be there every time she opened her eyes. We didn't stay at night because she was sedated and didn't really know we were there so we figured it better to get some rest while we could since we still didn't know what was to come. So on Tuesday, Wednesday and Thursday night's we continued to stay the hotel across the street from Children's. Not much happened on these days except alot of sitting and watching. There are some pictures of her while she was on the vent, sedated further down on the blog.

May 15th - Friday, Dr. Carron took Bailey back to the OR around 7:00 a.m. and the plan was to scope her and look to see how much swelling was still going on in her airway and try to take the vent tube out. He thought he would have to reintubate her (put the tube back in) but wasn't sure. We fully expected her to come out of the OR on this morning with another vent tube, still sedated, but she didn't. She came out extubated (with the tube out) and awake. At first the nurses didn't want us to hold her but Bailey was so upset and I insisted that if they would let me hold her she'd stop crying and settle down. And she did. Sid and I spent this whole day in the PICU holding Miss Bailey as she fussed and tried to fully recover from the sedation she'd been under. We were not moved out of the PICU because Dr. Carron wanted her to be observed 100% of the time since swelling could occur at anytime and would need to be corrected ASAP. You can only sit in a hospital chair so many hours before your eyes start to cross and you start to lose your mind. But I didn't want to leave Bailey over night since she was awake. I could just see her waking up and crying to be held and no one doing it. I don't think that would happen, but it very well could and you just never know. So Ne Ne and Jerry stayed over night with her in the PICU and Sid and I were back there again early Saturday morning to relieve them.

May 16th - Saturday, more of the same, just sitting and holding and rocking her. We stayed in the PICU the majority of the day but around 3:00 p.m. we were moved to the "floor" which is on a floor higher up in the hospital and just a regular hospital room with minimal nursing care. Jerry and Ne Ne stayed with her again and Sid and I got one more good night's rest. I think we were both asleep before the sun went down. It was such a relief to end our 5 day stay in the PICU.

May 17th - Sunday, We were again back at the hospital early to relieve Ne Ne and Jerry so they could get some rest. We just spent the majority of Sunday sitting and holding Bailey. We thought we'd be able to home but in the end Dr. Carron made the final call and he said no. So we stayed one more night, but looking back on it, this was the one and only night Sid and I actually spent at the hospital. Although we did spend from sunrise to way past sundown there.

May 18th - Monday, we were discharged and sent home!! Hooray!! Mom was on her way when we got home and as soon as she walked in the door I handed Bailey over and hit the bed. I knew the next morning and work was going to come early early and was dreading it. But we were home, safe and sound and what I had dreaded was behind us.

May 19th - Tuesday, for various reasons I didn't go to work and without knowing it, this ended up being the day that I decided to stay home with Bailey for the summer. This day was nothing but a blessing in disguise, which I'll touch on more later. Bailey's breathing didn't sound too good today and when we went to bed, I was a bit worried about her. I remember telling Sid that I was going to take her back to the doctor the next day if she didn't sound any better just to be on the safe side. She was sleeping with Mom and we could hear her trying to breath all the way across the house. She seemed to be uneasy and in some pain because she was requiring pain meds about every 4 hours. When it appeared to be wearing off, she'd get restless and start breathing harder. Something didn't seem right about this either.

May 20th - Wednesday, Mom and I decided to take Bailey back to Jackson just to be on the safe side, but in my mind I knew something wasn't right. She was having a hard time breathing and her chest was sinking in when she inhaled. By the the time we got ready and got a bag packed to be gone with Bailey all day and actually got to Dr. Carron's office, it was 11:30 a.m. He took one listen at her and said oh no, that's not right. She shouldn't sound like that. From there we were sent straight to the hospital and admitted and she was prepped for surgery that afternoon. Dr. Carron figured there might be some "granules" in her airway that needed to be removed, but indeed, Bailey was in respiratory distress for the 3rd time in a month. Bailey was taken back to the OR for the fourth time in 2 weeks about 5:00 p.m. and sure enough, she had some tissue in her airway that was causing her to not be able to breath and had some major swelling too. Dr. Carron removed the tissue, which was about 2 cms long by the looks of the picture and we spent another night at Children's. We were not sent back to the PICU, but instead we were in what they call transition. We were in a room, but the room had monitors outside the nurses could see and they came in every hour to take her vitals. Needless to say, we got no sleep and were just exhausted by this unforeseen bump in the road. But this day was even more confirmation that the decisions made on Tuesday to stay home with her instead of send her back to daycare were the right one's.

May 21st - Thursday, we got to come home and we were home by lunch. Bailey was breathing better than she ever had and on this day she became a mama's girl. Mom tried to so hard to keep her pacified while I rested and she wanted no one or nothing but me. Which of course, thrills me.

And that is the story. We go back tomorrow for the follow-up and I figure that Dr. Carron will want to sedate her in the OR and look at her airway one more time before he releases us. But Bailey is doing so good and it is amazing what she has been through in the past month and a half when I stop to think about it. She is the sweetest thing and I would never trade anything I have in the life for her. I would gladly trade places with her having gone through all this if it would save her from the pain and uncomfortableness. But hopefully we are on the backside of all of this and we look forward to much fun this summer!!!