Sunday, May 31, 2009

This is NOT The Rest Of The Story

But rather a posts of some firsts! Yes, that's right, we have some firsts at the Whitehead household this weekend.

I have been a bit worried about Bailey not rolling over yet. She will roll to her side but stop there and I think mainly she just couldn't take her hand out of her mouth long enough to roll the rest of the way over. And although she is ahead in just about everything else, I knew she should have already been rolling over. And this morning she did just that. Not once, but twice. Then the hand went back in her mouth and that was it.

And why the hand in her mouth??? I've been saying for a long time that she is teething because she is constantly chewing on whatever she can get her hands on and when she can't get her hands on anything, she just uses her hand and fingers. And this morning I think I finally feel a little bit of tooth that has broken through the skin. So she has had some Tylenol and is taking a much needed nap.

And one more first, we FINALLY have our first pair of shoes that actually fit. I brought Bailey a pair of sandals about two months ago I guess and her toes wouldn't even come to the end of them. They were way to big, but they were the smallest size. Well, yesterday while we were out, I found a pair of sandals that are almost identical to the ones I bought a few months ago and although they are still a bit too big, you can see the end of some of her toes. Sooo, we bought them and now we have her first pair of shoes. I can't wait until she starts walking or moving around more and we can buy her some "real" shoes like a pair of keds or something. But for now I'm excited that we have something we can put on her feet with her cute little dresses and outfits.

Oh and while we were at Sam's Wholesale yesterday my big girl sat in the front of the buggy strapped in and I almost cried. I cannot believe she is getting so big. Even though she will still snuggle and hopefully will always be my snuggle bug, she is turning into more of a baby than a newborn and it makes me sad. But at the same time, we are having so much fun.

We got her an Evenflo SmartSteps ExerSaucer yesterday and Sid put it together last night before we went to bed. It has so much stuff on it I think is a bit overwhelmed. But the few times I have put her in it she has been really sleepy and tired. I'm hoping when she wakes up she will sit and play but with my luck she won't want anything to do with this $100 toy!!!

I'll finish up the hospital story in the next post....maybe!!!

Thursday, May 28, 2009

Stuck In My Head...AGAIN!!

Yes, it's true! Even though I am staying at home now I still do not have the time I thought I would have to update this blog. I don't know how people do it every day, complete with pictures and everything. But anyway, there are so many posts in my head that I have been meaning to put on here and while Bailey is content watching Mickey Mouse's Playhouse (the only thing she will watch alone) I decided to go ahead and try to get one in.

Even though it is well past the two week mark of the big surgery and past it's the one week mark of the emergency surgery, I wanted to be sure and recap what has happened in the past month just for journaling's sake. So here goes:

April 25th - We took Bailey to the Riley's walk-in clinic on Saturday morning instead of the ER because we knew they would have a peditrician and I thought it better to see him than some random ER doc. We took her because she was having breathing problems and wheezing and stuff. The ped. immediatly said she had to be admitted to the hospital as she was in repiratory distress. Bailey was admitted into Riley's Hospital in Meridian and started on breathing treatments and the croup tent. He told us we would likely be here for 48 hours, which would mean going home sometime Monday.

April 26th - Same song and dance, different day! We just continued to do breathing treatments every two hours and keep her under the croup tent as much as possible. She really wasn't getting much better in my opinion. The ped. that admitted her came by sometime on this morning to see her and informed us he was going off call and his partner would be on call starting Monday morning and would be around to see her.

April 27th- Same song and dance, different day! Even though I knew that Bailey didn't sound much better, in my mind, we might go home today since it had been 48 hours since she had been admitted. I mean, how long can you give a 4 month old baby breathing treatments and steroid shots every two hours? So we waited for the new doc on call...and we waited...and we waited...and we waited...and we waited...and we waited...and we waited some more. And by 7:00 p.m., over 24 hours since the last doctor had seen Bailey, I marched myself to the nurse's station and told them that this "new" doctor had about 10 minutes to get there or I was taking my baby and going to a different hosptial that knew what they were doing. By this time, I had so wished that Sid and I knew enough to carry her straight to Jackson or Birmingham where she would be in a Children's Hosptial. But we just didn't know. So we waited some more and finally at 9:00 p.m. (yes, 9:00 at night ladies and gentlemen) this docctor comes in to see my 4 months old baby, meaning not only is it well past her bed time, but it has been 36 hours since she had last seen a doctor. Of course (in my Barbara Self way) I proceed to tell this doctor how unhappy I am that it has been 36 hours since she last saw a doctor and that I didn't think seeing an infant at 9:00 at night was best practice. Let me interject here that this doctor is not just the ped. on call, she is THE baby doctor for all the babies being born at this hosptial while she is on call. So it isn't just my baby that she was seeing at 9:00 at night. Anyway, after a long, long talk with this lady, I told her I wanted Bailey to be transferred to Children's. She then tells me that Bailey isn't sick enough for her to transfer to a higher level hospital but she isn't well enough to go home. WHATTTTTTTT???? After a few more words she leaves the room to go "see what she can do." I know what you can do lady, get my baby out of this hospital. Dr. "Twlight" returns only to tell me that the best she can do is keep us tonight and discharge us in the morning and let us go where we wanted to. After some tought and discussion with Sid we decide that we do not want to be discharged because then we'd just be starting over again at a new hospital and I didn't want Bailey to have to go through getting another IV and such, so we agreed to stay and she agreed to come back earlier the next morning to check on us. But before she left, she did change up a few things because she felt Bailey should be "better than she is" at this point.

April 28th - Tuesday morning, the doctor comes in pretty early, around 9:00 a.m. and when she hears Bailey she says that she would expect her to sound much better than she does and she thinks Bailey needs to have an upper airway scope to see where all the "congestion" sound was coming from. I should say here that at this point, Bailey was not in respiratory distress anymore, but she was still making some noises as if her lungs her congested. From listening to her, we knew her lungs were clear so the noises were coming from somewhere else, we just didn't know from where else. So she tells us that she wants to get in touch with the ENT at the hospital to see if he can do it, but does tell us that he probably will say send her to Jackson since she was so small. I don't know why she didn't just send us on to Jackson at this point, but she didn't. Later, we find out that the ENT is in surgery and it will be after 1:00 before she can ask him if he'll do it, but she still expects him to say no. We find out after 1:00 that he has indeed said no and she will be working on getting us an appt in Jackson. NeNe took off work and was at the hospital so that I could go get some work done, but since we didn't know if Bailey was going to have this done right then or not, I decided to stay. And of course, again, we wait...and we wait... and we wait... and we wait. And about 6:00 the nurse comes in and says that the doctor has called and said that she was unable to get an appointment in Jackson with the ENT but we'd be going home in the morning. The only way to describe what happened next is to say that I believe I had an out of body experience. I told the nurse that I don't understand what she means by she couldn't get an appointment. I mean if the doctor can't get us an appointment with the ENT then how the heck does she propose we get one ourselves and why on earth would she be sending us home the next day if we still didn't have answers. I told the nurse that I refused to stay in the hosptial one more second with my baby when she wasn't getting better and she had better get that doctor back on the phone and find out how to transfer us to Jackson or Birmingham immediatly. A few minutes later the nurse returned to tell us she had made a mistake, it wasn't that she couldn't get us an appointment, she just didn't have time or didn't or whatever her excuse was. But the doctor would be at the hospital at 8:00 the next morning getting us an appointment to go to Jackson. NeNe was still at the hospital with us so we decided that she would stay with Bailey and Sid and I came home to get some rest and a good shower because on the next day, something was getting done one way or another and I needed to rest up.

April 29th - Wednesday morning, the doctor comes in and tells us that we are being discharged and have an appointment to see Dr. Carron in Jackson at 3:00 this afternoon. We see Dr. Carron in his office and he does a small upper airway scope in the exam room with me holding Bailey. She was such a trooper, she didn't even cry. And he thinks that she has a birthmark in her throat and this is what was causing her noisey breathing, but just to make sure he wants to put her under anasthesia and look at it more to determine it's location and size to determine how to best treat it. We see pre-op and set up the procedure to be done a week from now, on May 8th.

May 7th - Thursday, Mom came to town and we left late afternoon to go spend the night in Jackson close to Children's Hospital since Bailey had to be there at 6:00 a.m. and couldn't have anything to eat or drink after midnight.

May 8th - Friday, Bailey has her scope done in the OR at Children's and we are told that she does not have a birthmark in her throat. But rather that she has a condition she was born with called Subglottic Stenosis, which basically is a narrowing in her trachea, or airway. The surgery to correct this is expalined to us and it didn't sound to good. We were discharged from the hospital and with instructions on bring her back the next Tuesday, May 12th, for major surgery on her airway.

Shew, I didn't know this was going to bring back so many memories and get so lengthy. This is why I can't get much blogging done, because I am too wordy. Haha! I'll finish up in the next post with "the rest of the story"!

Friday, May 22, 2009

An Emergency Surgery and A Stay At Home Mom!

Wow! I mean... WOW!!!!

We got home Monday afternoon as indicated in the last post and Mom got here not long after we did. Bailey slept with her Monday night so Sid and I could get some rest. Tuesday Bailey's breathing was pretty labored but I just assumed it was "normal" for the kind of surgery she had just had. Dr. Carron, who is again, the best thing next to sliced bread, called Tuesday afternoon to check on her and I explained to him how I felt her breathing was and he sounded concerned but I could tell he didn't really know how to take my concerns. He said he could see her before June 3rd if I thought she needed to see him. Tuesday night, I could hear her breathing all the way on the other side of the house and I told Sid that night when we got in the bed that I was taking her back to Dr. Carron's the next morning. I was very concerned. She did not seem unhappy. She was her usual smiling, playing self, but she seemed to be in what we thought was pain every couple of hours and so we were giving her the pain medication they sent her home with. That seemed to calm her some and so we just thought it was pain and labored breathing that was the problem. But on Wednesday there was no question, she had to see the doctor. Or I guess I should say I had to see the doctor to be reassured that she was breathing ok. I called Dr. Carron's office at 8:00 a.m. sharp and waited and waited for someone to call me back. In the meantime, I started to give Bailey a bath and realized that her lungs were retracting. Mom and I decided we'd head on to Jackson and either go to Dr. Carron's office or the ER at Children's. To make a long story short, we ended up at Dr. Carron's office about 11:40 a.m. and by 12:30 Bailey had been admitted to Children's and was being prepped for surgery around 4:30 p.m. I called Sid and his mom and they rushed on to Jackson. Thank goodness mom got Bailey to fall asleep as she couldn't have anything to eat so Sid, NeNe and I sat in the lobby for a bit while they napped in the room. At about 5:00 they came to get Bailey for surgery. We didn't really know what to expect because Dr. Carron wasn't really sure what to expect, but he knew something was up with Bailey's airway because she was in respiratory distress. She was in surgery about 45 mins this time and this is what we found out: Bailey had an over exaggerated response to being on the vent for 3 days and had some major, major swelling in her airway. Along with that she had a rather large (to be in your airway) piece of tissue left over from Tuesday's surgery that was in her airway, obstructing it. So that was removed. And the good news was we were lucky to have taken her on in and to get it taken care of before her breathing was so compromised she stopped breathing and we were only expected to have to stay one night in the hospital with this procedure. On Thursday around lunch Dr. Carron came to see her and expected to tell us that we were going to stay one more night just to make sure all was well...but...she sounded so good, I mean you had to get really close and actually watch for her chest to rise and fall to check to make sure she was breathing, that he let us go. We got home Thursday around 1:00 and have been fine ever since.

Bailey is growing and getting new skills every day. I am just amazed. I intend to do one of those "Top 10 Fav Things" post really soon to document what all she is doing. But Sid and I really appreciate all the prayers through this ordeal. As one of the preachers who came to be with us the day of the big surgery said, "We prayed her into this world and we're going to keep on praying for her!"

And in the middle of all this, I decided Bailey needed to be at home and not in daycare so she could chill out and relax and be a baby for a little bit. So for now, she and I are home and I am no longer working. Sid and I aren't sure yet how things will work out money-wise, but we know we'll figure it out. I can't wait to stay at home this summer and just love on my baby girl. I plan on taking her swimming and on walks in the stroller and to have lunch with her daddy and who knows what else we'll get into. But I can't wait!!!

Monday, May 18, 2009

His Grace Is Marching On!

WE ARE HOME! We go back to visit Dr. Carron on June 3rd. But until then it looks as if all is well. Miss Bailey Boo got her a good ole bath when we got home, she just smiled and smiled when I put her in her bathtub. She is a little crabby, probably because of the pain associated with what has happened and doesn't want to be put down. She has also developed a fear of strangers and she didn't have that before. Another thing I've noticed is that is fighting sleep. It took Sid forever to get her to sleep last night-VERY FRUSTRATING.

Anyway, we are thankful to be at home ane hopefully things will get back to normal now!

Friday, May 15, 2009

TGIF!!

Miss Bailey Boo was taken to the OR this morning about 7:30 and extubated. They did not have to reintubate with a smaller tube. She retuned to the PICU unsedated and breathing on her own. Thank the Good Lord! She has cried a good bit of the day from what I believe to be pain but tylenol takes care of it. She slept for about 2 hours once she got the first dose and then woke up crying again for awhile. She just the second dose and is laying in her bed smiling and talking to her daddy. She is doing just great and we feel so blessed! Dr. Carron ranks right up there with God and my pap-paw in my book right now! She either will move out of the PICU tonight or in the morning and will we still plan to go home Monday! I wish I had the camera so I could take a pic of her beautiful smile that we have missed since Tuesday. But I don't, so you'll just have to take my word for it!

Thursday, May 14, 2009

Update From the Bedside!

I was so out of it last night that I forgot to tell that we could bring the laptop and access the WiFi at the hospital. So I've caught up on my blog reading today while sitting her with my sweet girly girl!

So, on with the plans: Sedation will be turned off at 6 in the morning and Bailey will go to the OR at 7. They will take out the big vent tube and scope her for assessment. If there is still alot of swelling, they will put in a smaller vent tube and bring her back to the PICU, still unsedated. Dr. Carron will either take that smaller tube out sometime tomorrow afternoon or early Saturday morning. At that time, she'll go to a room. If by chance they can take the big tube out in the morning and leave it out, she'll probably still come back to the PICU for observation just to make sure there is no breathing distress before she goes to a room.

She still has a pretty high fever that is able to be handled with some tylenol. But once the tylenol wears off, it goes back up. They did some cultures to see if she might have something like that going on, but they won't be back for a few days. They did start a new antibiotic just in case.

Other than that, all is well in PICU-land! I just thank God this ordreal seems to be almost over and we'll be home in no time. Unless I've just jinxed us by saying that. Hopefully not!

Wednesday, May 13, 2009

Just A Good Ole Nap!

 

 

 


Bailey is doing just great today! She is doing just what the doctor's want her to be doing. A lot of NOTHING!! Just napping and resting and letting that airway heal. I finally realized today that I think why I am not as upset this go around with the vent as I was at birth is because she is only on the vent at this point for airway control, not because her lungs aren't working. Airway control is much much less worrisome and easier to do than making underdeveloped lungs work. We got to see her incision today and it might be an inch long, if that long and has a little tiny drain strip coming from it, but it isn't really draining all that much. Right now, because of what she is breathing in and out with the vent settings, we know that she has alot of inflammation in her airway, which is why she is on the vent. But as long as there is that much inflammation, she cannot come off the vent. So Dr. Carron explained to us today that if we see that the swelling has gone down and she isn't needing the vent as much as she is now on Friday, that he'd just take the vent out and let her go to a regular room and finish healing. BUT, if she still has as alot of swelling and inflammation on Friday, he'll take her back to the OR, take the vent out, and see what happens, asses the situation. There is a possibility she's have to be re-intubated (but the vent back in). At which case, she'd go back to the PICU. They will start some steroids tomorrow afternoon to help with the swelling and so we do hope that she can be extabated on Friday and moved to the floor and off the PICU floor.

Also, she developed a fever at some point over the night and tonight when we left she still had it. They are giving her Tylenol as needed for it and it does bring it down, but then it goes right back off when the Tylenol wears off. Soooo, they might do some cultures just to make sure there is no infection anywhere. I'm about to call and find out what her temp was at 9:00.

Sid and I stayed at the hospital today from 8:45 a.m. to 9:00 p.m. We had a few visitors and alot of quite time by Bailey's bedside. She isn't as out of it as I thought she'd be so when she does open her eyes we are there. We appreciate all of your calls and prayers. Bailey even got mail at the hospital today! Please continue to pray that the swelling in her airway goes down and that her fever will stay away. We will have an update tomorrow around 9:00 a.m. when we see her for the first time tomorrow, but I'm sure it'll be tomorrow night before I post!
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Tuesday, May 12, 2009

Our Little Girl Is A Trooper

Bailey made it through surgery just fine today. It lasted about 2 and a half hours and then they took her to the PICU. It was a little emotional to see her sedatede with the vent tube in once again, but she looked better than I expected her to. She is on some meds for the pain, antibiotic and something for sedation. But she is just lightly sedated because she can open her eyes and look at us and squeeze our finger and wrinkle that little fore head. She has one little incision in her neck that is wrapped up so we haven't seen it and her arms are lightly restrained so she won't pull the tube out. From what I've seen, that's a good thing.

I feel almost releived that we've come this far and I feel we are on the home stretch now. Dr. Carron says he plans to extubated her on Friday and then she'll move to a regular room at which time we can spend the nights with her too. We could actually spend the night with her now, if we wanted to sleep by her bed in the middle of the PICU in a regular chair. We don't. So we are accross the street at the Cabot Lodge where it will take all of two mins to get to her should something happen. But it won't. She's doing just great and God is good. So good!!

Dr. Carron said her stenosis was a grade 3, meaning she had a 70%-90% restriction in her airway. It's a million miracles she has not contracted an URI (upper respiratory infection). Dr. Carron says we should go home on Monday if all goes according to planned and then she'll have to wait another week to go back to daycare. For the time being, I have some new books and plan to sit by her bedside all day tomorrow after a great nights rest tonight!!!

Keep our little Bay in your prayers still. She is so so strong and we are so proud of her. Once again she has made us proud that she is ours and we are her's!!

Friday, May 8, 2009

Well, Things Didn't Go As Planned

I don't really know what to say except to say that what the doctor thought Bailey had was not what she has once he got in there this morning. She has a condition, for lack of a better word, that is called Subglottic Stenosis. Which basically means that her airway is narrow, and has been since birth, just a fluke the way it grew when she was growing. There is no other way to fix it other than a major surgery. We will go back on Tuesday to Children's in Jackson and the doctor, who is the ENT, Dr. Carron, will take some cartilage out of her shoulder area, then make a slit in her neck near her throat, open the airway and put the cartilage in to permantly open the airway. So, ok, that's all fine and dandy. The bad part of this is that they will then keep her sedated and on a vent for about 4 days to let the cartilage graft take place. Then after those 4 days, she will move to a regular room and stay about another three. All in all we plan to be at the hospital about 7-10 days.

So how do I feel? I don't know, I'm pretty numb. The hardest part of this whole thing for me right now is thinking about her having to be sedated for 4 days. 4 days is a long time to keep a baby like Bailey sedated. How is Sid feeling? He hasn't really talked about it much, but has shed some tears, bless his heart. Bailey is for sure a daddy's girl. She adores him, it makes me sick! He thinks that this will be harder than the NICU stay because we are attached and bonded with her more so than at birth and we know she is an active little girl so it will be hard to see her motionless for 4 days. And it will be hard to stay away from her at night for 4 straight nights while she is in the PICU.