Analeigh Rain: Living with Anoxic Brain Injury

Moving right along...

2011-11-13T17:11:00.001-08:00

Since my last blog entry, Analeigh's little brother Jayden was born on September 6th. He was a healthy 8lbs, 12 oz and 19 inches long and came via c-section at 39 weeks & 2 days. The picture above is our first family photo since his birth. He was about 7 weeks old at the time. We took the kids to the Pumpkin Patch for Fall pictures and Analeigh slept through the entire thing! Jayden tried to do the same but woke up a little bit. It was an interesting experience to say the least because when one of us was looking, the other wasn't. I was a little stressed out too because it was our first outing without a nurse so I was a little obsessive about things not going as planned. I wouldn't trade the experience for anything though because I know we're always going to treasure these photos. >3

We put Jayden in the bed with Analeigh from time to time because we want her to start learning him. I don't know to what degree she will be capable of recognizing and understanding her relationship to him, but it won't be because we didn't try. Sometimes she doesn't seem to mind him being close to her and other times, she looks anything but happy... but I know these pictures will also be special to us for years to come!

Here is my sweet girl in a beautiful dress I found at Sears when we were there taking Jayden to have his 2 month pictures taken. As soon as I saw it, I knew she would look gorgeous in it... so when we got home, her nurse Mary and I dressed her up and took a bunch of pictures. As you will notice, she is now wearing her hand splints and also AFO's. She's tolerating them pretty well, I think, and I'm hoping they will really start to do her some good!

I dressed her cousin Trinity up in the same dress and took some pictures of her so I could put them side by side. Makes them look like "twinkies" lol. So adorable! <3

And here is my sweet girl today... She's had a pretty decent last few months and only one short hospital stay since her last one back in July. Her GJ (feeding tube) accidentally came out and had to be replaced. While she was in the hospital to have that done, it turned out that she had another case of strep pneumonia and had to stay and extra couple of days for IV antibiotics. Also while she was there, she had an MRI done. It was originally scheduled for the 3rd of November but was done instead on Oct 31st... The results from the MRI were not what we had hoped for. Her brain shows no progress and no further damage. I asked her neurologist a series of questions and basically his opinion is that she will inevitably start having seizures, will most likely never come off the vent/oxygen/trach and probably won't ever learn new things (such as walking or eating).

It's now Nov. 20 ~ we went to go see the pulmonologist on the 18th. Her CBG looked good enough that he wanted to wean her breath rate on the vent down to 12 from 15 and her oxygen from 1.5 LPM to 1 LPM. He made the changes in his office before we left but tonight/this morning rather, I had to go back up on the breath rate to 15 again. While her sats look good, her respiratory rate has been elevated and just by watching her, her breathing seems more labored. I left the O2 setting at 1 for now and we shall see if that will last or not... I asked his opinion about what the neurologist told us regarding her ability to ever come off the vent and reluctantly, he admitted that he supports that assumption. He said we'll do our best to wean her as much as she will tolerate in hopes that it will happen one day but in his experience, it has not happened before with any other patient he has treated with her conditions.

Well, that's pretty much where we stand right now. I am too tired right this minute to go into much more detail but wanted to post an update before too much more time goes by.

Praise God for a quiet month!!

2011-08-28T22:21:00.000-07:00

I know I haven't posted anything in a while about how Analeigh is doing so I figured I'd take a moment to do just that. Since my last post, things have been going fairly well. She had an appointment with her pulmonologist on the 15th and as a result of some thick secretions that had a foul odor, she was put back on the Tobramycin nebulizer treatments for 2 weeks.

I hate when she has to have that stuff because it gets her heart rate up and she seems to be more agitated. It doesn't help that this past Monday, my M-Th day nurse realized that someone had been giving her twice the prescribed dose for a 2 day period (which was a total of 6 doses). Instead of getting the 80mg 3x per day, she was given 160mg 3x per day... much too high of a dose! It was an honest mistake, I'm sure, because the pharmacy misprinted the label saying the vials were 40mg vials and she was to be given 2 of them every 8 hours. In reality, they were 80mg vials (2ml per vial) and she only needed 1 vial of the Tobramycin mixed with 1 vial of Xopenex every 8 hours. Anyway, to make a long story short.. it was making her face all red and splotchy and her breathing was crazy. We decided to back off of it for a couple of days because an overdose of Tobramycin can make the lungs feel as if they are burning (which is probably why she was so fussy and red). That seemed to do the trick and she's back to her normal self.

She saw the ENT on the 19th... he confirmed the new Bivona trach is the appropriate size and everything looked good around the trach site. She was supposed to see her pediatrician tomorrow (for those 15 month shots she never got), but because she's still on the Tobramycin, they moved it to Sept 12.

Physical therapy seems to be helping with the stiffness she developed in her legs during her hospital stays back in July. She's tolerating them being bound together more often (which keeps her from getting too contracted in that butterfly position). She seems to really enjoy being in the prone position (on her stomach) and it amazes me every time I see her that way because she's getting so long now! She looks so small to me still sometimes until they stretch her out and then all I can say is "WOW!"

That's pretty much all that's gone on this last month... things are pretty calm (which we are grateful for). Thanks to all for your continued prayers and support. She still needs a miracle! :)

On another note, I'm getting so close to Jayden's arrival now... 8 more days!! My scheduled C-Section is on September 6th @ 39w2d. I'm so beyond ready! At the same time though, I have to admit that I'm starting to feel more and more nervous. The closer we get, the more real it is to me that I will soon have a newborn in the house who actually cries when he's hungry, sleepy or feels bad. I didn't get much of that with Analeigh. Her first 6 months were spent in the NICU and I never had to wake up for scheduled feedings in the middle of the night. When she first came home, I hardly went to bed before 2am, so I did get to experience a little bit of that but not on the scale that I'm about to with Jayden. It's kind of like becoming a mommy for the very first time.

Sometimes it's hard for me to remember Analeigh when she was really small... she always had wires everywhere and tape all over her face. Knowing that we won't have to go through that again makes me so relieved but at the same time, I realize that his care is going to be so much different from hers. I had a lot of help with her but with Jayden, it will all be up to me. Every feeding, poopy diaper, bath, etc. will be all mine. I know I'm in for a crazy ride! lol

Well folks, that's really all I have to share right now... just wanted to let everyone in on Analeigh's last month (that has thankfully been spent OUTSIDE of the hospital) and to remind you all to keep praying! :)

On this day in 2010...

2011-08-12T19:29:00.000-07:00

So, I saw this thing on Facebook today that said "On this day in 2010". It showed the status I posted that day... August 12, 2010 @ 9:04pm. Dr. Bedi in the NICU at Clear Lake had sat me down earlier that day and told me that Analeigh was going to need a tracheostomy. The alternative? Possibly death from respiratory failure. He answered all my questions, the nurses handed me some literature and I somehow managed to hold it together... until I got to my car. Then, I lost it.

I left that hospital feeling completely discouraged... and cheated. We weren't going to get those belly laughs or baby babbles that I had so been longing to hear. In fact, up to that point, we'd never even seen her smile. She was so hungry for air and fighting so hard that she just couldn't. I knew it was the right thing to do for her, but that still didn't make it feel any less like the end of the world. I cried the whole way home and more still while I was choking out the words to my Michael and my parents.

It was the biggest thing in our lives at that time. I worried about having to learn how to change the trach, clean it, suction it, etc. I was so overwhelmed. Looking back now, well... that was the easy part. I didn't think then that it could be any worse... and then it was. I'm grateful that we did at least get a few months of her smiles... and the baby babbles we were told we wouldn't get, well... we got those too. No laughs but those smiles made it not matter.

Oh how I wish we could go back! I wouldn't care if we had that version of Analeigh for the rest of her life because now I know.. it does get worse! I thought then that it was a matter of counting down a year, maybe two and then she'd be just like a normal child with stronger lungs. I never imagined a parent's worst nightmare could ever become reality for us. Well, now I know. I wish all the time that I hadn't taken those few precious months for granted like I know I did.

Below is my status update for that day and the comments everyone left me. The tracheostomy was actually done on the 18th.. 6 days after this post.

"Spoke to the dr today. Analeigh was seen by 3 specialists and they all agree that the only way she will get any better is to have a trachiostomy. A trach will be inserted in her throat to allow her to breathe. It will go through her vocal chords so she will not be able to talk. She'll have it probably until she's 5 yrs old."

August 12, 2010 at 9:04pm via Facebook Mobile · Privacy: · ·

Lisa Quick likes this.
- Loyce Schofield Shipman omg, if u need ne thing... and i mean it, u just let me kno. my father n law had 1 and he cud talk, just she or u will have to cover the hole up. Its hard and i kno it. I feel deeply 4 u!
  August 12, 2010 at 9:08pm ·
- Thea M. Joy
  Obviosly, this is hard news for us because it will mean having to learn how to change the trach tube, clean the area and suction her. Swimming will be out of the question and we'll have to learn sign language most likely. No first words or ...See More
  August 12, 2010 at 9:09pm ·
- Thea M. Joy Thanks Loyce... Yeah covering it when she gets older is an option but they did suggest sign language.
  August 12, 2010 at 9:12pm ·
- Jessica Mcdonald my prayers are with you and by gods will she will be healed all things are possible through Jesus Christ.... if you need anything give me a call
  August 12, 2010 at 9:16pm ·
- Tracey McAteer Teel Oh Thea, I am sooo sorry to hear this news. I know you two are struggling with this, and I know words don't mean much right now, but I will add you to the prayer list at church. I can not imagine how hard this was for you to hear. (((((Thea/Michael)))))
  August 12, 2010 at 9:16pm ·
- Thea M. Joy Thanks guys. It is very hard and still sinking in.
  August 12, 2010 at 9:19pm ·
- Jaki Frizzell Oh wow. When its removed will she be able to speak then?
  August 12, 2010 at 9:21pm ·
- Erin Evans Akey Thea I am so sorry......you guys just keep praying and hang in there!
  August 12, 2010 at 9:31pm ·
- Dezaraye Wertman Thea ... I wish I could do something. I will pray and I've sent out prayer requests on your behalf. I love you and I'm here for you if you need to talk. You know my number.
  August 12, 2010 at 9:38pm ·
- Stacy Breland I'm sorry for your news, I will keep praying...it's never too late for God's miracles to keep flowing for this little angel of yours...she alone is God's own little miracle..I could not even imagine the hurt u are going through... May God pour his blessings out for u!!..we all love u, and if u need anyone to talk to..I'm here for u
  August 12, 2010 at 9:55pm ·
- Thea M. Joy Thanks everyone. Jacki, she'll be able to talk once its out.
  August 12, 2010 at 10:14pm ·
- Jaki Frizzell Then maybe its a blessing in disguise, she'll know sign language and you won't loose her first laugh or word, you'll just have to wait a little longer. The sign language gives her astep ahead of others. I know your tired of waiting and bad news, but you have her.. And there's a good chance this will work so you can bring he home. Stay strong and keep praying.
  August 12, 2010 at 10:18pm ·
- Thea M. Joy Thanks... I'm hanging in there even if only by a thread.
  August 12, 2010 at 10:29pm ·
- Jaki Frizzell Hey a thread counts, tie a not in it and swing from it if you get a little bored! All jokes aside your in my prayers as well.
  August 12, 2010 at 10:31pm ·
- Thea M. Joy Lol, thanks.
  August 12, 2010 at 10:34pm ·
- Lacy Kay Zachary all I can say is (((((((((((((((HUGS)))))))))))))))
  August 12, 2010 at 10:38pm ·
- Thea M. Joy Thanks girl.
  August 12, 2010 at 10:52pm ·
- Nancy Joy I love you Thea, I love you Michael !!!
  August 12, 2010 at 11:30pm ·
- Thea M. Joy We love you too.
  August 13, 2010 at 8:55am ·
- Pam Gigout Buras Thea, I'm so sorry to hear this news and I'll be praying for you guys. Remember, when we are weak God is our strength!
  August 13, 2010 at 9:11am ·
- Thea M. Joy Thank you.
  August 13, 2010 at 12:10pm ·

Analeigh's Physical Therapy

2011-08-10T15:27:00.000-07:00

With every day that goes by, I become more and more concerned with the progress of Analeigh's physical therapy. Most days, if you so much as touch her right leg, she comes unglued. If you look at her feet, they are turned outward and I have to say, it looks very painful to me. Her physical therapist has made mention of her need for metal braces (vs. soft ones) that worries me. When I apply gentle pressure to her right foot and try to massage it and work it back inward, it's very clear to me that it causes Analeigh great discomfort. I'm thinking that metal braces would turn that minimal discomfort into constant pain. The alternative? She won't ever walk. Even with the braces, it's not clear to me how much progress we can make in that area.

Since she's spent so much time in the hospital without adequate therapy and positioning, her hips have also become more contracted. Her legs have been allowed to lay wide open for too long and so when we rotate her legs inward, she grimaces visibly. In order to help correct this problem and give her physical therapy even when the therapist isn't present, a few vital tools are needed. One is a seating device of some kind that will make it more impossible for her to have bad posture while sitting up. Our therapist recommended a Tumbleform chair for this very reason. It, unlike her bouncy seat, will force her to sit up better and with her legs extended in front of her instead of "spread eagle". I think if she is regularly placed in this chair, it will minimize the contracting of her hips, legs and knees.

Unfortunately, our insurance will not cover but one seating device and we've already chosen a Kid cart (that will help with transport to and from doctors' appointments and is designed to accomodate her equipment). These special chairs cost over $300 and we cannot afford one. I've set up a Donate button on this blog and also a link to donate on my facebook page.

If we can't raise the money to purchase this chair (and other equipment such as a custom car seat), I'll have to find various charity organizations to apply to for help. The process can take as long as 6-8 weeks just to have your application reviewed. In the meantime, Analeigh's physical condition is a constant worry. If you can help, please do... in whatever way that is. Whether it be prayer, a financial contribution or sharing the links with friends so they can donate.

My current goal is set at $1000 but any funds received above that amount will be used for other things Analeigh needs (ranging from diapers and wipes to additional medical supplies, a wheel chair ramp and eventually the purchase of an actual wheel chair if necessary). Thank you for your continued love, support and prayers throughout this long journey!

A Day of Firsts

2011-08-07T22:22:00.000-07:00

So, today Analeigh experienced her first public outing ever (besides going to the hospital or doctor's office)... we took her to church!! She slept through the ride there and even through praise & worship. This amazed me because it's not uncommon for her to wake up and give the nurses and I dirty looks when we're talking too loud and interrupting her sleep. I didn't even have to use the ear plugs my Dad got for her.

I was even more proud of her for how well she did with so many strangers touching her as they prayed. Her heart rate never got very high and she didn't look completely freaked out (like she usually does when she senses the presence of someone she doesn't know). She did get a little hot before it was all over and needed a breathing treatment as soon as we got her home but otherwise it was a great success!

She looked absolutely beautiful and I only wish I had managed to get more pictures to document her first REAL outing (that involved no ambulances). I did manage to sneak a couple while she was passed out peacefully in her car seat though.

Anyway, this is going to be a short post. I just wanted to make sure I made mention of how great she did and how grateful I am that everything went smoothly. I daresay she actually enjoyed this trip (probably because it didn't involve any painful poking or prodding) and I hope we can do it again soon (though it might be a good idea to wait until it's a little cooler outside). Big thanks again to all who shared the experience with us and to everyone who offered prayers on her behalf! :)

It's been a while.. Rambles about Analeigh & Baby Jayden's Approaching Arrival

2011-08-05T13:39:00.000-07:00

I know I have majorly slacked on updating this blog... I guess I just assume that everyone reads my Facebook updates/notes and probably won't even read what I write here. Sometimes though, I need a little more space to talk about the things that have been going on.

Last month, Analeigh spent 19 out of 31 days in the hospital. She went in Jul 2 - Jul 12 with aspiration pneumonia (from vomiting formula), then from Jul 18 - Jul 24 with aspiration pneumonia again (from aspirating her oral secretions), and finally from Jul 29 - Jul 31 with what was later discovered to be strep pneumonia. It seems like every time we turn around, something new and horrible is presenting itself. She has gone from having a G-button to a GJ (due to a severe case of reflux), and from an uncuffed trach to a cuffed one (that isnt currently inflated). All of this in an effort to prevent the aspiration pneumonia from happening again BUT she's vomited formula since then.

I'm now in full battle mode trying to get her in to see a pediatric gastroenterologist to find out if there are any other alternatives. She shouldn't be able to vomit with the combination of her GJ button, cuffed trach and nissen fundoplication (which tightens the esophagus to prevent fluids from coming back up into the airway). The doctors are blaming most of these new problems on her anoxic brain injury which is why I am so angry that they keep refusing to do another MRI. The PICU doctor told me that they usually like to wait 6-7 months out from the initial injury before repeating the MRI. Here's my problem... it's been 6 1/2 months already! Aren't we close enough??

I just think that if they are going to say that these changes in her condition are neurological in origin, shouldn't we get another picture of her brain to find out if the damage appears to be worse than it was six months ago? It looked pretty bad then! They refused also to do another EEG, saying that it would only be useful in documenting seizure activity (which thankfully she hasn't had so far) and wouldn't tell us anything else about her brain activity. I know she hasn't made any of the progress so far that they were hoping for but it's not like I'm expecting the MRI to show me a miracle. I would have seen the miracle if it had happened by now... I just want to know, IS IT WORSE??

Sometimes I feel like these doctors are just toying with us. One second they want us to have "hope" and the next, anything but. Naturally, the brain injury worries me but I am even more concerned with the beating her lungs have taken this last month. The chronic lung disease already takes a lot out of her and then adding back to back cases of pneumonia, it's a wonder her respiratory status hasn't taken an even more drastic turn for the worse. She's a fighter, I know... I just want to figure out any possible way we can to keep her lungs protected from any further damage.

On another note, things with Jayden (the bun in the oven) have been coming along nicely. The last weight I got on him was at 33w3d and he was already 5lbs, 6oz (he was the size of a 35 weeker). Now that I am actually almost 35 weeks, it wouldn't shock me if he measured to be the size of a 36.5-37 weeker. Maybe, just maybe this means he can come out just a little early. I've gotten so big and miserable that I can't help but hope that the end is near... VERY near!!

His room is all put together along with his swing, pack n play and stroller. All of his clothes have been washed and put away in his dresser, just waiting for him to wear. I need a couple more things that aren't deal breakers, but for the most part... we're ready!

I am so looking forward to this being a different experience. Analeigh was so early and caused us so much worry and stress that it was hardly an enjoyable event. I didn't even get to hear her cry or hold her because she had to be intubated immedately and placed in the isolette. I want to hear Jayden's first cry and hold him while they're finishing up. I want to be able to attempt breast feeding and having that early mother-son bonding time. I think it would do my heart some good because I feel like I was cheated out of so much where Analeigh is concerned.

It still seems a little unreal at times that there will soon be a REAL newborn in the house. One that doesn't spend six months in the NICU and that gets to be dressed up in the cute "coming home" outfit and placed in a car to go home (instead of an ambulance). It's a little like experiencing motherhood for the first time because everything went so completely different with Analeigh. She was six days old before I could touch her, a month and half old before I could hold her and almost two months old before she was even allowed to wear clothes. She was over four months old before I ever saw her face without any tape on it. Goodness, I can't wait to see what it's really like!! :)

I'm trying to ignore the feelings of guilt when I find myself getting excited. I think about everything Analeigh couldn't do from birth and can't do now and all the things we didn't get to experience with her (belly laughs, family outings, getting her ears pierced, taking her to church, etc.) and then I daydream about the things we will get to do with Jayden. It just makes me feel bad sometimes because I worry that we'll get so caught up in the freedom of a normal child that we'll forget to take time for Analeigh. I guess it's normal for me to worry about that and I suppose I'll just have to take extra care in making sure she isn't left behind (so to speak).

Well, I think I've taken up enough of your time for today. Thanks to you all who listen and who show your continued love and support. We appreciate each and every one of you! :)

Just some thoughts today...

2011-06-28T13:34:00.000-07:00

I watched a video a little while ago about a baby girl who was born without a heartbeat and not breathing. After 20 minutes, they managed to revive her but worried about the chance of brain damage. She had an abnormal EEG which they followed up with an MRI that was normal. I read a lot of the comments people left with stories of miracles that happened to them in similar situations but instead of feeling inspired or hopeful, it left me with feelings of jealousy and anger. Why hasn't my daughter received a miracle like this? Has she not fought hard enough? Long enough? Does she not deserve it anymore than the next child?

I know this is the wrong way to look at it and my heart should rejoice for those who have been healed and restored. It's just that it breaks my heart to look at my sweet girl sometimes and to see that she's obviously suffering and there's nothing I can do. One smile could make so much difference and we can't even get that. I used to think that there was a reason that we got her back, that she didn't die. I guess I thought that God was testing us to see how well we would take care of her and love her and that if we passed that test, she would get her miracle. Now I find myself wondering that if that were true, maybe we failed? People say you just have to "have faith".... maybe ours isn't strong enough?

I keep trying to remind myself that God works in mysterious ways and he doesn't always let us in on the plan. We're just supposed to keep trusting and believing and let him do his miracles in his own time. I know this is true. I'm just saying that sometimes it's hard not to question what He's doing (or seemingly, not doing). It's even harder not to wonder whether or not it will ever happen for her.

Lately, we've been faced with a lot. Analeigh seems to be getting somewhat contracted in her hips and her feet are bent to one side. You can't move them. With feet like that, walking will not be an easy task (if it's ever even a possibility). She seems to have an endless supply of secretions that may be the reason she's been breathing the way she has (almost as if she's hyperventilating). I thought she'd be through the storming by now, but it doesn't appear that she is or will be anytime soon.

ECI has been hounding me about speech and vision therapy and while I know they have good intentions, I have been wrestling with whether or not I believe it will do her any good. She was diagnosed with cortical blindness (which means her vision has been affected by the brain damage), so her brain does not recognize what she is looking at. If she can't understand what she sees, can she understand what she hears? How would she be able to learn sign language? If we can't get her off the vent to teach her how to speak, how will she ever communicate with us?

Some days I force myself not to think about these things because it's just too much. I try to make myself believe that the reason I'm not spending as much time with her lately is simply because I'm pregnant and just too tired. I think maybe I'm lying to myself and the truth is that I just feel too discouraged when I see her laying there with her heart rate up, respiratory rate up and cheeks flushed... and no smiles. There is always some demand on my time (which usually helps me hold it together) but recently, I wish it would all go away. I finally admit that I am sick and tired of scheduling doctors' appointments, returning phone calls, skipping over the cute outfit I know she would look good in because it will make her too hot, medicines needing to be refilled, etc. The list goes on and on. I've heard it said by so many that God only gives us what we can handle. I just wonder now, how many times do we have to cry "Uncle!" before we get a break??

I guess I'm having one of those crybaby days where I just feel sorry for myself. I had read blogs by other moms with babies/children with other serious problems back before Analeigh's brain injury and told myself I didn't deserve to feel sorry for myself because we were better off than they were. Now, I don't know that I feel that way anymore. There's always something wrong, something needing to be done and I'M TIRED. Physically, mentally, emotionally TIRED. I am fighting to be excited about the new baby coming, but really... it just stresses me out with the fear of whether or not I'm going to have to do this all over again. I don't think I could. I really don't. If I have to see the inside of a NICU again, I think I'll just.... well, fall apart.

Well folks, there you have it. The ones who appear to be "strong" aren't always what they seem. I don't always have it together and I don't have all the answers. I get tired of people asking me how she is because there just isn't much good to say. She just is. I apologize to any people I have snapped at while being questioned... it just seems like I've had to repeat myself over and over again between doctors, therapists, friends, family, nurses, etc. I've told the story a thousand times and it doesn't get any better each time. She still doesn't laugh, smile, talk or play. She doesn't get to go to the park, to birthday parties or family get-togethers. She doesn't get to have her ears pierced or wear pretty dresses to church. She can't drink a bottle or eat chicken nuggets. These things might seem trivial to some, but when your child can't do what so many take for granted... you realize just how important they are.

So Much Has Happened

2011-03-17T12:25:00.000-07:00

I haven't written in quite a while although most of you who read this blog have probably been keeping up with us through Facebook. Back in January of this year, I was getting ready to start classes in the nursing program at Lee College in Baytown and Analeigh was doing great. Little did we know that life was about to throw us some major curve balls.

First, Michael and I discovered that we were expecting again. It was a surprise, to say the least, but I wasn't going to let it slow me down as far as my classes were concerned. Right around the time classes began, the morning sickness had begun to set in which presented a challenge but not one that would be allowed to throw a monkey wrench into my plans. Not like what was to come, anyway.

Following my Thursday evening class on January 21, I made it home around 5pm. Michael came in from work shortly thereafter and we both sat down to relax in front of the TV. I had received a good report about Analeigh's day and she was sleeping peacefully as the nurse got her 6pm bottle ready. After a little while, we heard Analeigh throwing a bit of a fit and unsure as to whether or not she was merely playing with her toys or actually fussing, Michael got up to go in and check on her. She suddenly turned blue as the nurse held her trying to console her and stopped breathing.

As our CPR efforts were unsuccessful, 911 was called and paramedics arrived on scene shortly thereafter. They continued working on her but remained unsuccessful for an additional 20-30 minutes before getting a pulse back. She was life-flighted to Children's Memorial Hermann in Houston and admitted into their PICU. Her vitals were stable when we arrived there but she was completely non-responsive to any kind of stimulation. Soon, she was given sedatives in an effort to keep her calm while it was being determined whether or not she had suffered any kind of permanent damage from the incident.

An MRI and EEG confirmed our worst fears.... she had suffered extensive brain damage due to the lack of oxygen flow to her brain. It was unclear what the outcome was going to be or even the full extent of the damage. After spending 3 days at Children's Memorial, we had her moved to Clear Lake Regional in Webster (which was where she was born and spent the first 6 months of her life). Later, their chest x-rays showed no sign of aspiration (where the ones at Children's Memorial had) but revealed even more damage to the brain than had been seen on the first MRI. Each EEG seemed to show less promise than the one before and to this day, it still remains unclear as to what her final prognosis will be.

As far as what happened... the doctors can't really say. It is believed, however, that a mucus plug or similar obstruction blocked her trach and made it impossible for her to breath (also hampering our CPR efforts). There is nothing that can really be done to prevent a similar incident from happening (with the exception of prayer) again. After spending a month in the PICU at Clear Lake Regional, Analeigh finally came back home on February 22.

Since then, it has been a lot of doctor's appointments and such that keeps us all very busy. Analeigh is currently suffering from what is called Sympathetic Storming due to the anoxic brain injury. The "storming" consists of hypertension (high blood pressure), tachycardia (extremely elevated heart rate), posturing (the involuntary extension/flexion of her arms and legs), and diaphoresis (clammy skin, excessive sweating). She is on several medications in an effort to control her level of agitation which include Clonidine, Phenobarbital, and Diazepam (Valium). The medications do not always work like they should and there are periods of time where she suffers from an extremely rapid respiratory rate, high heart rate and high temperature. During these times, all we can do to help her is change her position in the bed or give her ibuprofen/tylenol.

She is still getting physical therapy 3 days a week but she is now being fed through a G-button (a tube inserted into her abdominal wall for nutritional purposes). She still does not respond much to visual stimulation but more to sound and touch. Her tone has begun to decrease (which is great) which means she is becoming a bit more relaxed physically. Right now, we are just doing the best we can to keep her comfortable and as healthy as possible.

The new baby is coming along well so far. I'm 14.5 weeks as of today and due September 11. Dr. Rowe informed me that it will be a BOY, so his name will be Jayden Michael. Right now, we're just hoping and praying for a healthy full-term baby. :)

Please keep us all in your prayers. Analeigh is in need of a miracle and we need as many people as possible to believe for that with us. Thank you to all who have offered their love and support during this difficult time in our lives. We appreciate each and every one of you!

It's almost Christmas....

2010-12-08T19:02:00.000-08:00

Things have been kind of crazy around here since about the 16th of November... Analeigh had a cardiologist appointment that day that thankfully went very well. They did an EKG and said her heart looks GREAT! We don't have to go back unless the pulmonologist deems it necessary for some reason in the future.

Thanksgiving was a little stressful for me. The day started off badly with the neighbor's dog killing my cat, Screamer. My sister stepped outside to head over to my parents' house and saw him toting her in his mouth across my yard. We never saw her again so I can only assume he killed her. After all that commotion, I had to do baby girl's bath and trach care and get her dressed in her lil Baby's 1st Thanksgiving outfit (a job in and of itself) and then getting her across the street to my mom's was miserable. She didn't like the stroller at all and she was fussy most of the time we were there. We barely got her back home befoe it started raining outside and she, of course, protested the whole way. The funny thing is, as soon as she was back in her own room and her own bed, she was all smiles.

The 30th of November, we went and saw her ENT for the first time. He said everything with the trach is looking good and we're going to leave the size 4.0 Neo trach in for a while longer. We aren't scheduled to go back until the 1st of March at which point he will schedule an outpatient procedure at TCH to get pictures of her airway. We'll have a good idea of her progress then.

December 3rd we went and saw her pediatrician because she's been wheezing a lot lately. He figured it was just allergies so she went back on Proventil and it's seemed to make some difference. She got her flu and synagis shots and I was so proud of how well she did. She barely fussed when they did them and soon after it was like nothing ever happened. I gave her some ibproufen when we got home and she never even ran a fever or became irritated and fussy. We have to go back at the first of the year for the second flu shot and another synagis.

Coming up on December 20, we are scheduled to see her pulmonologist. I'm not sure if we're going to be able to keep the appointment because Medicaid decided to switch her from Traditional to another plan and it requires us to get a referral for every specialist appointment. Hopefully the switch was a mistake and we can get it corrected in time to see him. Otherwise, it will probably get pushed until after the first of the year.

On another note, I enrolled in classes at Lee today... starting Jan 18, I'll begin my semester of pre-requesites for their RN program. I signed up for Human Anatomy & Physiology I, Pharmacology, Intro to Psychology and Health Care Spanish. Should be an interesting semester. Hopefully we'll contine to get 24 hour nursing which will make my going to school much more managable. :)

My Baby Girl is Teething!!

2010-11-08T13:59:00.000-08:00

Analeigh is growing up sooo fast!! Just the other day, ECI was over and she weighed 13.2 lbs and measured 23 inches long. She's 7 months old tomorrow and I can hardly believe it! She got her first taste of baby cereal in her 6 am bottle and she's teething!! I had noticed she'd been slobbering a lot lately and it looked like I could see some white in her gums but this morning the nurse said she could feel the tooth coming through her gums. WOW!! :)

I don't have much else in the way of exciting news except that I'm happy to report that baby girl has been on 1/4 of a liter of oxygen for the last few days and seems to be tolerating it fairly well. Her sats are not as good as they were on 1/2 liter but an adjustment period is to be expected. Initially I had hoped to have her completely weened off before we go back to see the pulmonologist on December 6, but I really don't think that's going to be possible now. When we changed her to 1/2 liter, she didn't even miss a beat but I can tell that with the 1/4 liter, it's a little bit more work for her. I sure don't want to rush it!

On another note, I am so excited about Thanksgiving! My mom, sister, niece and I went shopping this past Saturday to find the girls matching outfits for the holiday. It's crazy but they're both in 3-6m size now so it was easy just to get 2 of everything. They are going to be so cute, I just know it! :P

Progress

2010-11-01T21:29:00.000-07:00

Analeigh finished her Amoxicillin today and now only has the tobramycin/albuterol mix left. She hardly ever needs to be suctioned anymore and we've been able to ween her pressure support on the vent down to 11 from 13. She also has been changed to 1/2 liter of oxygen and is doing well. When I get her supply shipment on Thursday, I will be getting a new oxygen concentrator that will allow me to ween her oxygen further but at a slower pace. I will work her down to 1/32 of a liter before completely taking her off of it in order to giver her more time to adjust.

Things got a little bumpy this past Saturday night because the home health agency waited until the last minute to let me know that we weren't going to have a nurse for the 7p - 7a shift. Michael and I had not prepared with a nap so the 12 hour shift was utterly exhausting. By the time our day nurse showed up at 7a on Sunday morning, I was ready to drop. I crawled into bed around 7:30am (Michael had already passed out on the couch an hour and a half before) and was dead to the world until 3:30pm.

We almost had the same problem again on Sunday night because the home health people had confused our nurse. One guy told her she had to work and then another came behind him and told her she didn't have to... so 7p came and went and no one showed up. I called the agency and they called her in but she didn't make it until around 9:30. I was relieved because I really don't think I could have handled it for two nights in a row.
Needless to say, our Halloween was very calm and uneventful. We watched a little television, ate some pizza and called it a night. :)

Tomorrow afternoon ECI is coming for their initial visit. I really don't know exactly what to expect because I don't have any experience in dealing with them. All I know is little bits and pieces the nurses have told me about their experience with them so I'm hoping it's going to be a positive and productive visit. From what I gather, they are supposed to help monitor Analeigh's skill development and teach me ways to work with her on her motor skills so she isn't too far behind. I guess tomorrow they will just observe her to see where she's at in terms of corrected versus actual age and what needs to be done.

Well guys, that's it for now. Thanks for reading and hope you all had a safe holiday... personally, I'm looking forward to Thanksgiving!!

We Have Been So Blessed!!

2010-10-25T17:16:00.000-07:00

Things with Analeigh have been going pretty well since she's been home. We changed her trach on the 15th of this month and by that night I noticed she was needing to be suctioned... I suctioned her and discovered her secretions had a foul odor. Not even five minutes afterward, she sounded like she needed it again. By the next morning, the odor had become worse so I called her pediatrician. He wanted to do a tracheal culture before prescribing any meds so the nurse from home health brought the supplies and took the culture the following morning. Cultures are read at 24, 48 and 72 hours so I knew it would be a little while before we had results. I was upset with the pediatrician because I KNEW it was a bacterial infection and she should be put on antibiotics immediately... that's how it was done in the NICU. Anyway, we had an appointment with her pulmonologist on October 21st which proved to be much more helpful to us.

The pulmonologist prescribed Amoxicillin and a Tobramycin/Albuterol solution to be given via nebulizer. I had no problem getting the Amoxicillin filled but getting my hands on the Tobramycin proved to be an aggravating venture. The pediatrician's office finally called me back the day after we saw the pulmonologist to inform me that her tracheal culture indeed revealed an infection... HOWEVER, they had no plans of prescribing any medication since she was not runing a fever. I was furious! How could they allow a bacterial infection to continue developing and go untreated?? The last time she had an infection, it led to her being intubated again and another three months in the NICU. Thank GOD for the pulmonologist. We started her on the Amoxicillin almost immediately and have seen a great difference as a result. The blood that had showed up in her secretions disappeared and her appetite, mood and overall appearance improved. After some problems with the insurance/pharmacy, I finally managed to get her Tobramycin today and she's just had her first dose. Surely after the 10 day course of these antibiotics, she'll have managed to get rid of the infection completely.

On another subject... I read a woman's blog today about her child who has Trisomy 18 aka Edwards Syndrome. This is the presence of an extra 18th chromosome. It is defined as "incompatible with life" and only 5-10% of these babies live to see their first birthday. I read about all the things this precious little girl and her family have been though since her birth and I have to say... it really made me realize just how blessed we have been. I followed a link from her blog to that of another mother whose little girl had the same condition along with other medical problems and REALLY saw just how easy things have actually been for us. This little girl (who I will refer to as "M") just recently passed away and as I read about the pain her mother felt, it broke my heart. I can't even imagine going though all the surgeries this poor baby needed, the hope the heartbreak and then losing her.

When the doctor first told us that Analeigh needed a tracheostomy, I thought it was the end of the world. All I could think about was how I was going to be cheated of those "first words", belly laughs, so on and so forth. Knowing she could cry without us hearing her or be upset without anyone noticing and the possiblity of starting kindergarten with a trach was almost more than I could take. I cried the whole way home and all the way through sharing the news with Michael and my family. I was scared that taking care of her with her "special needs" would be more than I could handle. I knew there was really no option NOT to allow the surgery because otherwise she would be forced to gasp for air, be denied peaceful sleep and possibly die of respiratory failure.

After the surgery, we waited to see the "huge difference" the doctors promised us and it just didn't seem to be the case. We were getting so impatient and aggravated after so many months of treks back and forth to the hospital for what always seemed like bad news. It wasn't until a month or so afterward that we began seeing the real difference. She slept better, ate better and SMILED! I started learning from the nurses there at CLRMC and it wasn't long before I realized that I could handle it. It also helped to know I was going to have home health nurses 24 hours a day too.

Since reading those blogs, I now realize that having a "trach baby" is such a blessing compared to what could've been. She could have had more complex problems that doctors consider to be "incompatible with life"... she could have required multiple surgeries and neverending doctors' appointments. She could even no longer be with us... THANK GOD for the miracle of her life! She will eventually have healthy lungs and a fully developed airway and no longer need the trachea or the ventilator. She might be a little behind according to her actual age, but she'll catch up. Most importantly, she'll LIVE!

It's so great how when we start feeling sorry for ourselves or buried by our situations and circumstances, God shows us that we aren't alone and that there are other people out there whose situations and circumstances far outweigh our own. I spent too much time wondering why I was given the baby who had "special needs" and everyone around me had perfectly healthy newborns. Now I know that despite her "special needs", she is still the blessing God had in store for me. She may even be the one thing to show me what I'm supposed to do with my life. I now have plans to start nursing school in the Spring.. maybe to become a Neonatal Nurse. I would have never chosen that profession in a million years but thanks to her, I know I can do it with the proper education and training.

So, just a word from the newly wise.... if you start feeling sorry for yourself, just turn on your computer and search for blogs about women with "medically complex" children. It will break your heart but it will teach you that no matter how bad it is for you, it could be worse.

Falling Into Place

2010-10-14T13:55:00.000-07:00

     Our baby girl finally made it home on Monday, October 4th around noon. She was a mere 5 days away from being 6 months old. I can't even explain the joy we felt to finally see her in her own crib that sat empty in our home for so long. Things have not really been quite as hectic as I first anticipated. Analeigh has seemed to adjust to home life pretty well so far. We had our first pediatrician's appointment only 2 days after getting home but since then we've been able to stay here. The nurses from home health have been wonderful thus far and as expected, she has them all wrapped around her little fingers.
   I've been keeping myself busy around the house with cooking, cleaning, washing and sterilizing bottles, mixing formula and doing laundry. I often help the nurses with Analeigh's baths and trach care because I feel it's very important that I not become too dependent on their presence. You never really know when Medicaid might decide they no longer want to pay for 24 hour care anymore. I am quite confident I could handle it without their help but it's definitely a lot of work for one person and I can't be awake all day everyday.
     She's doing some things now that are new and I'm so excited. One of them is this thing where she takes her paci out of her mouth, holds it in her hand for a minute and then throws it toward the foot of her crib. Sometimes she just kind of drops it next to her side but usually she gets a kick out of throwing it. She also will now stand up in your lap with assistance. She'll straighten her legs out and then bounce a little. It's so cute!
     All the nurses seem to be very amazed that she takes all her feeds by bottle and that it's very rare that she needs to be suctioned. Apparently all their other experience with vent/trach babies is frequent suctioning and G-buttons or NG tubes. She's still on a rate of 10 bpm from the ventilator but her sats stay in the 95-100 range for the most part (she does tend to dip into the 80's when she's throwing a fit). I'm hoping that after our pulmonologist appointment next Thursday, they'll let us start weening... I don't really care where we start as long as we start a weening process. It's not that I want to rush her, I just feel like she's doing SO well that maybe we could afford to make a tiny change or two at a time until eventually she won't need the vent or the trach anymore.
     I do so appreciate every bit of support from everyone who has been involved in our lives and Analeigh's the last 6 months. We couldn't have come this far without the nurses at Clear Lake Regional NICU, our social worker Georgia and our friends and family. We have been so blessed by so many with kind hearts!

Michael and I in the lobby of Clear Lake Regional Medical Center on October 4, 2010 to take our baby girl home for the first time at nearly 6 months old.

Heading out of the NICU to the service elevators.

Going to the ambulance waiting to take us home. This was the first time Analeigh had ever seen the outdoors.

Dad, Me and Georgia waving goodbye to the hospital after Analeigh was loaded.

Getting everything ready to place baby girl in her own crib in her own room for the first time.

Analeigh all dressed and ready for her first pediatrician's visit on October 6, 2010.

Analeigh at her pediatrician's office... she got warm so we took off a layer. lol

Home on her play mat looking all cute.

Daddy feeding Analeigh her 6pm bottle - Oct 13, 2010.

I'll try to post a little more often but it's just been so great not having to drive an hour away everyday to see our baby girl and I'm enjoying every minute! Doing that mommy thing is so nice! :)

5 days and a sleep left!!

2010-09-28T18:56:00.000-07:00

Things are really starting to come together now. Our home assessment was completed by the Care Group (medical supply company) today and we passed so that's a relief. I was worried with us just moving and the house not completely put together that it would affect us negatively, but since we have ample space for her equipment and supplies now, things went quite smoothly.

I spoke to the social worker today and the plan is this: Medical equipment and supplies will be delivered to our home on Thursday. Either Thursday or Friday we have to take the car seat to the hospital for Analeigh to complete a car seat challenge. This will determine whether or not she'll be able to be transported via car seat not only home but to future doctors' appointments as well. They'll put her in it after a feeding for an hour and a half while monitoring her sats. If she doesn't do well and a car bed is necessary, they'll send us home with one of those. Friday after Michael gets off work, we'll head up to the hospital to room in that night through Saturday night. We'll come home at some point Sunday for a little rest before heading back to the hospital Monday morning. She'll be discharged before noon (probably somewhere around 11am) and transported to our home via ambulance along with Clear Lake Regional's NICU transport team. We aren't clear yet on whether or not there will be room for us to ride in the ambulance with her or if we'll have to follow in our own vehicle. Once we arrive home, home health nursing will be waiting for us along with our Care Group rep to get her in the house and settled.

The social worker finally managed to find a pediatrician willing to take her with her special needs and her insurance... the only thing is, we'll have to drive all the way to Beaumont. On the upside though, she says he comes highly recommended. Thankfully, she'll have had her 6 month immunizations before leaving the hospital so we won't have to immediately take her to the doctor to get them. :)

I've been sick the last few days so I haven't been able to go see her... they don't like to let you in with a cough and runny nose. :( Michael has been going by himself but tonight we chose to stay home and get in some R&R before the craziness sets in. I called to check on her though and was told she's had a great day... been getting all the nurses to play with her! She's taking between 3-4 ounces per feeding every 3-4 hours, which is great. She weighs 11 lbs, 7.3 oz now. Our baby girl is getting big so fast!

Okay boys and girls, that's all for now! :)

9 More Days!!!

2010-09-25T06:15:00.000-07:00

We're getting closer everyday to bring our sweet baby girl home.... 9 more days to go! Today is a busy day for us because we're moving into a bigger place in order to accommodate Analeigh's medical equipment and supplies as well as having an additional person in our home at all times. Where we are now just is just too small! The place we're moving to is next door to my parents, has a yard, a covered car port and 3 bedrooms. We'll have a much bigger living room and bigger bedrooms.

After the move this weekend, the Care Group will be coming to do their "home assessment" on Tuesday, then Thursday they'll deliver all the supplies and equipment she'll need. That Friday and Saturday night will be spent rooming in at the hospital in order to ensure we know how to provide all the care she requires (ie: preparing bottles, giving required medications, breathing treatments, suctioning, cleaning and changing her trach and operating the ventilator). Sunday will be our "day of rest" and then she'll come home sometime during the middle of the day on Monday, October 4th by ambulance.

It's exciting but I suppose a bit scary at the same time. It's not that I don't feel like I can handle her care, I just wonder if we really have everything we're going to need for her. I've tried to get things over the last several months as I thought of them, but from time to time someone mentions something I never even realized I needed. I guess all new moms encounter that, not just ones with "medically complex" babies like me. LOL. :) The dietician said they'll send me home with a case of formula and I know I have diapers and wipes to get started so I'm trying not to panic.

Keep our family in your prayers, please. Pray for a smooth transition home and peace for not only us but her doctors and nurses as well. I know they are nervous about sending her home on the ventilator but they also know she needs the love and attention she'll get at home. Plus... she can't stay in the hospital forever. I know she has them all wrapped around her little finger but they've had her for 6 months... it's our turn now!!! :)