Savannah's recent emergency

On Tuesday I had taken Savannah to the doctor because she was vomiting and really irritable which is a sign that her shunt isn't working. Well her regular pediatrician wasn't there that day so we saw another lady. She looked at her ears and said that her right ear was really infected and sent us home with an antibiotic. She said not to worry about her shunt. I still felt like it was her shunt because Savannah can have a severe double ear infection and not even cry because her pain tolerance is so high. Later that night she seemed to be getting worse. She could not keep anything down including her medicine and she was screaming non stop. So I called the on call doc and it happened to be the lady she had saw that day. She said just to bring her in the next morning and they would give her an antibiotic shot. Well morning came and I was getting extremely concerned so I made an appt. with her regular doc. She took some blood and said everything looked great but that she was going to call neurosurgery and see if they wanted to check her out. Well they of course wanted to see her. We went straight to the ER at childrens. Once there they took us right back and cathed her to check her urine, put an IV in (which took 4 tries bc she was so dehydrated) and started her on fluids. She had a CT scan and xrays to check her shunt. They both looked great so they told us it was not her shunt. They admitted her so that she could continue getting fluids and monitoring. They kept her there until Friday morning and sent us home since she was drinking just enough to have wet diapers and not vomiting anymore. (of course she had not eaten in 4 days.) I still felt really uneasy and just could not understand how she could be this sick from a virus. She was also sleeping 23 hours a day. But I trusted the docs and tried to put my gut feeling to the side. Well Saturday morning I had to call back to children's because she was getting really lethargic and both of her eyes were starting to turn inward. By the time we got her back to the ER at childrens her right eye was turned so far in you could barely see her pupil. It was really scary. Well then her heart rate started dropping and they told us to be prepared that she could crash at any minute. I was a complete panicking basket case at this point. Well they did another CT scan and this time it showed enlarged ventricals which meant that the shunt was malfunctioning. They decided to do emergency shunt surgery and had her in surgery within an hour and a half. Since it was the weekend her regular doc didnt do it, the on call doc did. They told us there were more risks with this surgery than last time because the catheter had been in there for a year and had probably become attached to her in places. They said when pulling it out it could cause another brain bleed and if it was too much they would have to put a drain in her head to the outside for a couple days and then go back in to put the shunt back. Thankfully this did not happen. She will be at risk for a brain infection for 6 months so we have to keep a close eye on her. But they inject the shunt with antibiotics before putting it in to help this. Immediately after surgery you could see a difference in her. The nurse carried her out and she was wide awake and smiling. I just felt so so bad that I had not went with my motherly instints and pushed for them to do more tests earlier. They said probably what was happening was that in the beginning it was sputtering but not completely clogged and that is why the CT scan didn't change but once it was completely blocked it started to change and she became critical. I feel so bad because I had started to back down on the whole germ thing and then this happened. There is no way of knowing if that is what caused it, its likely that it wasn't, but had I been on my game I would have known to insist it wasn't a virus. But since I had let people hold her and not wipe things down as much I had in my mind that there was a chance that it was a virus. So pretty much everytime she gets a stomach virus she will have to go to childrens and get her shunt checked because their symptoms are so similar. I know I won't always be able to prevent germs but I am going back to my OCD ways until she is 3. That is the magic number for immune system anyway and at least by then she will be able to vocalize that her head hurts. That way we will be more aware. I just don't want to go through this everytime she is sick. It was a horrible nightmare. They also had to shave alot of her pretty hair. And her incision is quite a bit larger this time. The last three surgeries she had they put dissolvable stitches in but this time the incision was too big so he used the kind that has to be taken out. She goes this coming Monday to get them out. That should be fun.

Savannah's Doc Appt.

OK, so the week of Christmas Savannah had a follow-up appt with her Pediatric Rehabilitation Doctor. We discussed more in depth about her Cerebral Palsy and what was to be in the long term. We got some news that will require lots of prayer and hard decisions on mine and Daniels part. (and of course prayer from all of you) At the first visit we were told that Savannah has mild Cerebral Palsy in her legs. What that means is that her hamstrings are tighter than they should be and her heel cords are slightly tighter than normal. We were told that she would more than likely be able to walk on her own but may or may not require some small assistance. Well we took that as, OK great...braces on her legs to help with the tip toes and Physical therapy every two weeks like she has been getting. Plus tons and tons of stretching and practicing on our part. That's what we are looking at. Well turns out that even though she is considered mild, she will still require surgery. The way it was explained to us is when a child with Cerebral Palsy (CP) grows they get to a point where stretching and bracing doesn't really help any longer. So if you do nothing her bones will start to become deformed from not being in the correct form and she will lose her mobility. So its not a matter of IF she will have surgery because she WILL have surgery. Now it is just a matter of when and that is where the prayers and hard decisions come in. You see there are two types of surgeries.

One surgery is one that not every CP patient is a candidate for but she almost positively would be. 5 doctors have to consult about it and all 5 doctors have to agree 100% that she is a good candidate for it. If one so much as hesitates then she can't have this particular surgery. It is called Selective Dorsal Rhizotomy. It is a permanent fix. It could mean she would only have one surgery for the rest of her life. It could, if it works to its fullest potential, take away almost all symptoms of her CP. It would be done soon...like when she is 2. Sounds great right? So what is so hard about choosing this one? Well the surgery is performed on the spinal cord by a neurosurgeon. Several nerves are cut. She would be in the ICU after. And there is potential for loss of bladder function and paralysis.

The second surgery would not be performed until she is closer to 5.(or at least that is the age we would shoot for.) She would HAVE to receive Botox injections (which scare me on a whole different level since they are not approved by the FDA for this purpose) every 6 months until then to keep her muscles loose and these are very painful. This surgery would involve going in and cutting the tendons and lengthening them. She would be in casts for weeks after and then would have to go through extensive Physical Therapy to learn how to walk again. This surgery may or may not be permanent. She could have to have the same surgery again a few years later as she grows more. (She is more likely to need more surgeries the earlier she has the surgery).I guess I should also explain my concerns with Botox. When I researched it, I found that it was not approved by the FDA for patients with CP and that there have been several deaths that have occurred when used for this reason. When given to these patients, since given in such high doses, it can travel to other parts of the body causing a condition similar to Botulism which causes hospitalization and sometimes death. I further learned that all of the patients were CP patients with upper extremities affected so the Botox was administered near the heart. I have since talked with the doctor and he said it has never happened to a CP patient who was just affected in the legs and Savannah would not even be a candidate for this to happen to. I, however, am still very scared of it.

So here lies the dilemma. Do we subject her to such a risky surgery to try to keep her from having multiple surgeries and tons of Botox injections and potentially "cure" her symptoms or do we play it safe and put her through all the painful shots and surgeries and castings and therapies so that we don't risk complete paralysis. I am absolutely scared to death of making the wrong decision. I mean this is the rest of her life we are talking about. Daniel and I have been struggling with this since we went to this appt. and we are just at a loss right now. Please be in prayer for us that we make the best decision for her.

On a brighter note, She is coming along fantastically. She is now pulling to a standing position on everything and she can walk behind her stroller toy. So I have no doubt that she could walk with a walker or canes right now. Our goal is to get her to walking with just braces before either of the surgeries for the best outcome on either one. The less assistance she needs going into the surgeries the better!

Here is a video of her walking with her stroller toy.

Has it really been over a month?

The last several weeks have been super busy. They have been filled with doctors appointments, holiday get togethers, shopping, and lots of family time. First off, Savannah had an eye appointment in Birmingham on the first of December. This was only the second eye exam she has had since coming home from the hospital. The main reason she has to be checked is to keep an eye out for ROP. Retinopathy of Prematurity. It basically has to do with blood vessel growth and has various stages..worse case causing retina detachment causing blindness. Anyway, Savannah showed the very beginning stages of this in the NICU and so she has to be monitored for a few years. Her first appointment, only one month after being out of the NICU, revealed that it was completely gone. So now we just keep a check on her eye sight. Doc said this time her eye sight was great! He said she didn't need to come back for a year maybe even two. We feel really blessed because eye sight is so often affected in micropreemie babies.

We have had two holiday get togethers in the first two weekends of December. The first was with my brother in law and sister in law and their kids. We had a great time! The SEC championship game was on so they came during half time and Daniel and Tommy finished watching it together. The kids played and had a great time. After we ate the kids opened their first presents of the year. Levi went first. He was so cute. He started to try at first but then got bored so his momma had to help him. He was more interested in the toys that were already out. Then when he figured out that their was a toy in the wrapping paper he was ready. lol Savannah on the other hand was all about opening the present. Just very very slowly and daintily. Half way through, Levi decided to come over and help her. He just thought she wasn't going fast enough. They were so sweet. Then not long before they got ready to go Tommy and Daniel had them standing and facing each other and Savannah leaned over and gave Levi a big ole kiss on the lips. You couldn't help but laugh. The next weekend we had 3 sweet couples come over for Christmas goodies and Dirty Santa. Ty and Leslie Simmons and their two kids, Chris and Tiffany Simmons, and Matt and Katie Griffies all came. A great time was had and there were lots of laughs. I am so thankful that we became friends with so many new people this past year.

Levi, Thomas, and Savannah (I love Levi and Savannah's face in this one!)

Levi opening his gift.
Savannah opening her gift.

Ty, Leslie, Katie, and Tiffany eating some goodies Dirty Santa get together

Nathan and Savannah playing together I was very excited because Daniel was able to get off work on the 20th and not go back until the 28th, then he worked 3 days and was off until yesterday. Savannah and I loved having him home. We spent the week of Christmas just relaxing at home, with the exception of the tuesday we went to B'ham for Savannah's doc appt which I will blog about next, and we just enjoyed our time together. The Friday before Christmas we went to Levi's first birthday party. That was really fun. He was too cute eating his cake. Somewhere in there, I can't remember which day, we went to the Zoo to look at the lights and we rode the train. That was really fun and really cold. One night we drove around with my parents drinking coffee and looking at Christmas lights. I always love doing that. We have always done that since I was a little girl.

Savannah ready to go look at lights at the Zoo

Savannah and Mommy on the Train at the Zoo

Savannah and Daddy on the Train at the Zoo

The fam at Zoo Lights

Christmas Eve was TONS of fun. I cooked all day long and my parents and grandparents came over that afternoon. We at lots of my favorite holiday junk food and watched Alvin and the Chipmunks: The Squeekquel. My grandparents went home and my parents spent the night. I had so much fun getting Santa's stuff ready this year. Fixing the stockings, getting the big presents out. I know next year will be even better. Savannah was very excited and really didn't want to go to sleep so she ended up sleeping in the bed with us. My grandparents came back to our house on Christmas morning around 9:30am. We ate breakfast that Daniel had cooked and then we opened presents. Savannah had a blast! She loved all of her presents! Trixie thought all of the presents were hers so she had to help Savannah open them all. They were so funny. Savannah played with her presents all day. She did not want to take a nap. I don't think she ever did which made for a long night of trying to get a very cranky baby to go to sleep. Lunch was fabulous as always and we spent the whole day with my parents and grandparents. It was wonderful! That afternoon I got a call from Carol Leah. She has called me every year on Chrismas for the past 15 years and so the tradition continues...even now that we have kiddos...lol It's always fun to see what each other got..although I don't think we even got to talk about that this year...it was all about the kids. :) Here are just a few pictures from Christmas. It was sooooo hard to pick just a couple. There were soo many good ones but there was no way to put them all on here.

Everyone (except me) on Christmas Eve Savannah helping make Cookies for Santa Santa eating some of Santa's cookies Santa Came!! Opening some gifts

All of Savannah's Christmas gifts Playing with some of her new toys Time for some good food
The pretty Ham Daniel cooked

New Years was fantastic too. Same people. Us, my parents, and grandparents....at our house...eating homeade pizza playing board games and watching The Sorcerer's Apprentice. I truly love my family and how close we are. I love that Savannah has them in her life! Well I think that caught the holidays up.

Thanksgiving Weekend

We enjoyed a wonderful Thanksgiving weekend this year. I decided to make my desserts on Wednesday this year so that I would not have to get up so terribly early on Thursday morning. I made Pineapple upside down cake and Pumpkin Cheesecake, both of which turned out absolutely amazing! I also prepared my sweet potato casserole so that all I had to do was stick it in the oven Thursday morning. It was so nice not to get up until 7:30 Thanksgiving morning. Daniel cooks the turkey every year. He always does an amazing job. It is always so moist and delicious.

We had a leisurely morning with Savannah, cooking, and watching the Macy's Thanksgiving Day parade. We went to my mom's house to eat at 1pm. My grandparents also came. Trixie too. We had SO much food. Everything was so yummy!!

We spent the day together, taking pictures and just hanging out. Daniel, Savannah, Trixie, and I all spent the night at my parents house. Daniel and I were going to go to Toys r us that night for some shopping but decided to stay home and enjoy some family time. We did however, get up at 4am Friday morning and go shopping. We got a few good deals and came home in time to shower and rest a bit before the Iron Bowl. My parents and grandparents came to our apartment to watch the game. We ate pizza and had a blast. WAR EAGLE by the way!!

Saturday we got up early and all of us drove to Birmingham to go shopping. Our first stop was Toysrus. Savannah racked up between what we bought and what my parents and grandparents bought her. Then we went to the Galleria and Savannah went to visit Santa. I was afraid that she was going to cry. She absolutely LOVED him. It was so hard to even get her to look in the general direction of the camera because she was so mesmerized by him. It was so precious. We were finally able to get a picture and then her daddy went to pick her up and turned her to him and she just started talking up a storm to him. I guess she was telling him what she wanted for Christmas. lol It was too cute! We then went and ate at J. Alexanders. My all time favorite steak plave ever. Then we went to a few other places, Daniel and I pretty much finished up Savannah's Christmas shopping, with the exception of a few small things, and then we came home. Sunday we had a wonderful Lord's day and relaxed at home. It was a great, fun, exhausting weekend. So many wonderful memories were made!

Tons to be Thankful for!!

I decided to write two posts today since tomorrow is Thanksgiving and I know I won't have time to write a post tomorrow. I have so much to be thankful for this year.

First of all I have a wonderful God who sent his son to die for my salvation. I am so thankful that even though I am so unworthy, that I have a chance to one day live in Heaven with him. It is my prayer that I live my life daily so that my family and I can accomplish this goal.

I have a wonderful Christian Husband. I am very thankful that I was fortunate enough to find such a wonderful christian man to spend my life with. Having someone with the same goal of going to Heaven to spend your life with is priceless. He is such a kind, considerate man and he works so hard so that I can stay at home with our little girl. I loved him so much already but when I look at him and Savannah together my heart just bursts with love and I just fall in love with him all over again. He is such a wonderful hands on father and Savannah is so fortunate to have a Godly father who loves her so much and is so involved with her.

I have a beautiful little girl. You know, as a little girl, it was always my dream to one day grow up, marry the man of my dreams and become a mommy. Well a few years ago I was faced with the very real truth that I may not be able to have a baby of my own. As most of you know, Daniel and I went through 3 years of heart breaking fertility treatment trying to conceive a precious baby. Well last year I was given the most beautiful blessing from God. This will be our first Thanksgiving at home with her. She was still in the NICU last year. I am thankful for so many things on her behalf. I am thankful that she survived her birth. I am thankful that she survived those first crucial months. I am thankful that she is so healthy. I am thankful that she is proving so many doctors wrong. I am thankful that she is in my life and has made it so much better. She has truly made me a better person and I pray that I teach her the ways of the Lord and that she grows up to know and love God. She is such a beautiful, vibrant, loving, smart little girl and the world is definitely a better place to have her in it.

I am thankful for my loving parents. They have always been there for me no matter what. They took Daniel in from day one and love him like a son. Not everyone can say that they are close with their parents and I count it a blessing that I am with mine. They are wonderful Christians and I am so glad that Savannah has them in her life. I am thankful that she will be able to grow up so close to them and have so many cherished memories with them.

I am thankful for my grandparents. I am thankful that I still have them around. I am very fortunate to have young grandparents who will be able to see my daughter grow up. (Lord Willing). I am thankful for everything they do for us and I pray that I never take them for granted.

I am thankful for my Church family at Prattville. They are such a kind group of people and I am so thankful that we have the opportunity to serve with them now. We have met some amazing people there who we have made close lasting friendships with and I am forever grateful for that.

Basically I just have a very thankful heart this year. Not just tomorrow but all the time. I have so much to be thankful for. The Lord has certainly blessed me this year and my cup is overflowing. This certainly is not all I am thankful for but I just wanted to point out a few things. I hope everyone has a very Happy Thanksgiving. I am very excited to kick this holiday season off!

Catching up on the last year.

So I haven't really blogged about the things going on with us over the last year. Let me tell you ..it has been one crazy year but it has been the best year of my life. Savannah is an amazing blessing and a wonderful addition to our family. I'm going to try and catch everyone up without making this a novel and hopefully tell things that I haven't already told.

When we came home, just a week before Christmas 2009, we knew it was going to be rough for a few months. See, the doctors scared us to death. They told us before we left the hospital...."DO NOT GET HER SICK"!!!! They were very adamant about this and told us all the scary things that could happen if she even got the slightest little cold. You see the common minor cold to an adult could be life threatening to a preemie with no immune system to fight it off yet. She also had a shunt in her brain...this complicated things even more. Needless to say, the doctors accomplished what they set out to do and we were absolutely petrified of getting her sick. This meant staying at home, with the exception of doctors visits, until cold and flu season was over. This also meant being very very careful about the visiting process. So I stayed home everyday with Savannah and went nowhere except to the doctor with her. Daniel went to work everyday but he had to strip his clothes at the door everyday and go straight to the shower before he was allowed to sit on or touch anything or anyone. At work he carried hand sanitizer with him everywhere and he did not touch anyone...not even to shake a hand. (And he was in sales at the time so you can imagine how that went). Only immediate family were allowed to visit Savannah and they were required to come straight from their house with freshly washed clothing, wash their hands thoroughly when they got here, sanitize, and where a mask and gloves. It was very hard telling people they could not come visit but it was for the safety of our daughter. Most people understood, there were a few who didn't and they got offended, but that was a small price to pay for my daughters well being. Let me just throw in that most preemies are in and out of the hospital fighting for their life due to all sorts of infections such a pneumonia and RSV during the first 3 years of their life. Some of these can't be helped... I understand that some of these HAVE to be put into daycare or have siblings who are in school. BUT..I have control over these things with my child and if I can prevent them from happening then I am going to do everything in my power to do it. Savannah is now 14 months old, and though many people laugh at my OCD germ issues..lol, she has only had one sickness in her entire life. That is a very rare thing for a preemie. Anyway...Savannah's first time out was on Easter. We were able to start taking her to church and places like that then. We still had to be careful about hand shaking and who held her..making sure they were not sick and that they were sanitized first. We still do that to this day. We have recently had to take her out of cradle roll at church due to cold and flu season being here again. Once she is about 3 years old we won't have to worry about all of this so much and I know we will probably have to deal with a lot of sickness due to her having no immunity to it..but hey..that's the life of having a preemie.

Now an update on her development. Let me just refresh your memory. At 3 days old we had a doctor sit us down and tell us that she would probably have to be institutionalized and would not even know she was in this world due to how bad her brain bleed was and the damage it caused her brain. She would more than likely suffer from Severe Cerebral Palsy, Blindness, Deafness, Mental Retardation, and she would probably never come off the ventilator or feeding tube. We also had docs along the way tell us that with a grade IV bleed you almost always have devastating lifelong disabilities and that while she COULD prove them wrong the she more that likely would NOT. Well let's just say our sweet girl keeps proving them doctors wrong left and right and she keeps proving the power of PRAYER!! As you read before she came off the ventilator pretty quickly and then the feeding tube while still in the hospital. Her eye exams have been great and she has passed all hearing exams with flying colors so far. Now as far as other development. As far as cognitive she is right on target with where she should be. Somewhere between her actual and adjusted age. She is very verbal. She talks non stop. Of course most of the time we have no idea what she is saying but she is perfectly aware. She does have a small vocabulary though. She can say Dada, daddy, mama, mommy, book, bye bye, baby, Trixie, hey, no no, she says ba ba for bottle, and yeah. She shakes her head yes and no when asked a question. She understands what no means (although she is a daredevil and will defy you). She loves to give love and kisses. Physically is where she is delayed. So far she has been delayed only...she has been able to do everything she should its just been months behind. She rolled over late but she did it. She sat up on her own late but she does it. She crawled late but she does it. She has yet to walk but I have no doubt that she will do that too. She has a physical therapist that comes to our home every two weeks to work with her. Her upper body is amazing and has no problems. She feeds herself, uses both hands, claps, etc. But her legs are a little tight. Mostly her hamstrings. We stretch them daily and that helps bunches. Some docs think she may have very mild Cerebral palsy in her legs..mainly her right, but some think its too early to tell. She has some little pink braces that she wears right now only when we are practicing standing to keep her from being on her tip toes. The thing with not being 100% right now is that she is still at an age where it is hard to tell. See a little leg tightness can just be a preemie thing. But either way..whether she does or she doesn't..we treat it the same way. All docs do seem to be agreeing that she will walk. Most micro preemies don't walk til they are two anyway so we have a while to work on it. At this point...I am just so grateful for all that she can do that they said she would never be able to, that this little set back just isn't that big a deal to me. Now with all of this said...we still won't know 100% of the damage to her brain until she is probably in school. She could have trouble in math (who doesn't), behavioral problems, ADD, etc. But what we do know is that for the most part she is going to be a happy, healthy little girl. I do know that she is such a blessing to be around. She is so beautiful..not sure how she turned out SO beautiful!! She is such a happy person and she loves life. She is fun and smart and teaches me so much about life. She makes me want to be a better person.

An update about our family for the year. As you know we moved to Prattville while Savannah was in the NICU. We love living in pville. We have however already outgrown our apartment, even though its almost twice the size of our last one. We are now members of Prattville Church of Christ and we are SO happy there. That is truly and amazing congregation and we have made some amazing lifelong close friends. I am so thankful for all the members there and I am so happy that Savannah will have such a wonderful church family to grow up with, with tons of children her age. They keep us very busy but we enjoy every minute.

Oh and I forgot to mention that back in April that Savannah had her permanent VP shunt placement surgery and did really well with that. It is working great!

Blogging Again

So over the last several months I have been a horrible blogger. I have had so much going on and have had absolutely no time to blog. I've missed it so I am going to start blogging again. I hope to do a much better job and hopefully keep everyone better informed of things. I last blogged about Savannah's stay in the hospital and was writing from my journal of her stay (more for me, so that I could have a record to keep on here) but I've decided not to do that since it is so time consuming. I am going to do a couple blogs just to get everyone caught up on what's been going on with us and then I will be starting with NOW. :-) So this is just a short blog to say Hello again and to let you know to start checking back for updates! Much love!