Crawling!!

Oh yes, that is right, Teak Joseph is crawling and it happened before he was even 9 months old. Take that Spina Bifida!!! He is still pretty cautious but working his way into full blown. He knows hot to do it and does it beautifully on all fours. I was so excited to show his physical therapist, she was excited to see it.
He started off doing these bounces around the floor. He would keep both knees in or one knee in and one leg out and then bounce or actually hop around the room with his arms flailing through the air. It was quite funny to watch especially when he was after a dog or a the cat.
Goodness, people were right about them getting into everything, but again, I am so thankful that we have this problem. This is not a bad problem to have when your little one has SB.
Teak loves to chase the cat. I want to get him on video going after Stella. It is hilarious. He smiles at her and talks to her and then starts after her. She is scared of him for the most part. She only lets him get to a certain closeness then she is done and gets the heck out of dodge.
He first started out towards the dog's water bowl. He had already poured it on himself a couple times so he knew the fun times it brought and the amount of crazy it did to his mother. This child is very motivated by everything that he isn't supposed to have. All of a sudden the toys that he was playing with were so juvenile to him...at least that is how his face looked when I offered them to him to coax him away from the water bowl or dad's playstation or our cell phone charger cords.
In any sense, he is crawling. Check out the video, it took us pulling along a charger cord for him to move but hey it worked. No judgments please. It wasn't plugged in and he only played with it for a bit then it was politely taken away.

Be Aware

It is weird talking to other moms, young and old, who don't have a child with Spina Bifida. When you talk about not being able to wait for your child to crawl and move around they are fast to warn you that is not something you are looking forward to because they are into everything. Well, for us who have children with SB, you can't wait for them to be mobile. That is a big deal when they move on their own, crawl to get a toy or in Teak's case, anything that he is not supposed to be getting into. We want this normality to occur. Why is that we seem to knock down a development of a human child? What is so "uh-oh" about these milestones that we tell parents to beware and not wish and want?
Teak became pretty mobile once he turned 8 months. He had started to move around more rather than just sit stiffly on a mat to play. He began reaching for toys more and working on moving his body to reach for toys. He understood that you could pull the toy basket closer to him to get what he wanted. (Sigh, it is crazy to watch a human being grow...think about it...crazy!)
Back when Teak was only 2 months old we started getting physical therapy through Easter Seals which is a division of ECI (Early Childhood Intervention). You have to make a 6 month goal with them so we made our goal to be rolling from back to belly and belly to back. Well, my child didn't like rolling. He was pretty sure that he didn't want to roll ever. He very well knew that we could get him the toy we just placed out of his reach and darnit he was going to fuss until we gave it back to him. Rolling didn't seem to be an option for him. Well, then we realized that he hated to be on his belly which a lot of babies do and so he would have such a fit and arch his little back to the point where he would make himself roll to his back. After a while he definitely got that one down and as soon as you would place him on his belly he would reach his arm up and roll to his back and then he was fine. He would completely shut off the tears and be happy again.
As the months went on we would work with the physical therapist ,and work by ourselves when she wasn't there, on rolling back to belly. He just wasn't having it. Then around 4.5 months, I realized that he had enough back strength to sit up on his own. Now, he would start to fall over sideways after a minute or so but then around 5 months he could sit pretty well unassisted. He had such a belly on him by now that that helped to keep him up right plus he kept his legs out so straight. I would work on bending them constantly and making him side sit and he would just plop those legs back to straight ahead and he liked them nice and stiff.
Back to the rolling, well, we finally got it down when he was about 8.5 months. He would fuss and throw a fit then finally flip from back to belly. Only after he had figured out how to push up from belly to sitting was motivated to roll from back to belly because the end result would be is favorite position of sitting. Except now that he was moving around he would actually go directly to a side sit or with bent knees! Thank God, literally, I was afraid that would never happen! Just shows you not to have fear, things happen in their own time.

Ringing

Before Teak was 6 months old he was sized for the molds for his hearing aids. It was a little mentally annoying because they do another visual hearing test. Chad and I agree with the audiologists findings from the hearing test because it is scientific but it is so hard to really grasp that he has a hearing loss. The boy hears, darnit! He reacts to his name, the dogs barking, items falling, me talking to him. Ugh, I honestly think that the hearing loss is harder to deal with then the Spina Bifida and I hate to admit that. The issue is that we have to agree to get him the hearing aids and of course we agree because we don't want our son to have a speech problem when he is older.
With the Spina Bifida it is more of a waiting game for us because he hasn't had a lot of "issues" yet even though we know that things can come in the future especially with walking, etc. Anyway, with the hearing aids are so right in your face, smack! We know that Teak doesn't understand what exactly we are doing putting these things in his ears. They are just fun chewing toys.
We had been in Houston the first part of May because Chad's grandfather was sick and in the hospital. He has had bone cancer and then came down with pneumonia. It was an emotional weekend but we are thankful that we were there. Chad's grandfather, aka Buster, passed away. He did get a glimpse of Teak which was the biggest goal of the weekend. Chad really wanted him to meet Teak. Buster played a big role in Chad's childhood. He will forever be missed. Okay, okay, back to my point of this post! So the molds take a couple weeks to come in, they end up coming in the week after we had an emotional weekend. I explain to our director and audiologist about the weekend and they told us that if we want to wait to start using the aids until after the funeral, etc, that was fine so of course, we choose to wait. It is just a lot to take in.
So the first full day that Teak wore the hearing aids was one emotional day. It was just hard to get used to him wearing the hearing aids. First of all, they make his ears stick out a little bit. I know, I know, not a big deal but the point is that they make him look different... When you hug on him, they feedback or ring a bit which is normal yet so incredibly annoying. The ringing in the ears is no fun for us or Teak. Could you imagine having ringing in your ears! Well, I end up emotionally breaking down for about a minute and feeling sorry for myself. Really feeling sorry for myself. I decide that I need to let myself have a little breakdown over this because I really hadn't yet but then I feel guilty. It is another issue with feeling like you can't protect your child from something. Kids are mean to other kids that are "different." The "What Ifs" start dancing around in my head again. I tell myself to let it out for a few more seconds and then compose, get it together and hug my Teak. I tell him I love him and decide to take a walk to the park.
So we are at our neighborhood park swinging and a little girl walks up with her mother. She is maybe 2 years old and wants to swing. She is focusing on Teak saying baby, etc., which is all fine until she says booboo and is pointing and looking at Teak. Her mother sweetly says to her that she doesn't think the baby has a booboo and they continue to swing.
Well, I just smile over at them and keep swinging myself all the while thinking how wonderful it is that a 2 yr old even noticed the damn hearing aids. I get why she said booboo, yes, it would seem that he has a booboo because he has something in his ears to help him hear better. I am not sure where I am going with this but just wanted to get it off my chest because even though I am not mad at the little girl or her mother, I am was just annoyed with the hearing aids that day and admittedly a little annoyed at God as well.
So back to the ringing...my little boy is so not little anymore. He is growing up so fast and getting big, not just around the belly but his ears as well. His molds are already too small and won't fit in his ears so all they do all day is RING! And when they ring all day, he really wants to pull the things out and chew on them. Heck, I would love to chew those things up as well. Our hearing specialist hounds me about keeping the hearing aids in his ears but if all he does is take them out then my sanity is going to disappear sooner rather than later.
We finally got new molds sized so we will see once those come in...

6 Months Down

Check your calendars, it has been 6 months since Teak was born. I can hardly believe it. Wow, how a life can change in so little time. It was a good day at start, a beautiful Spring day in Austin. The weather was great. Teak on the other hand was not so great. He was a bit fussy and drooling a LOT so I can only think that he must be getting some more teeth coming in. He had 2 teeth that came in just a few days before he turned 4 months old. They were the 2 bottom teeth. Now, his gums on the top are all puffy and pushing through. Teak has been such a different baby since he learned to sit up on his own around 5 months. He is so much calmer and happier. He just loves to sit up straight with his legs out straight. He doesn't like to fold his legs in at all but has great posture! What a baby boy. We are so thankful that he has stayed so healthy through these 6 months of his life. He is rolling from belly to back only because he hates to be on his belly. We are still working on back to belly but we will get there. He is still seeing a physical therapist once a week and we love her. Simone is wonderful with Teak and truly a joy to work with as well. She is not too opinionated but looks out for Teak and his best interest. Sorry, when you are around a lot of doctors and nurses and therapists you have to learn to weed through their words....remembering that you are the parent of your child and you know them better than anyone. So physical therapy is going great. We do a lot of floor time during the day. It is hard though since all he wants to do is sit, sit, sit.

NICU

Teak was in the NICU at Dell Children's Hospital for 12 days. We left on Monday, Nov. 8th. The last two days and nights we were in a "sleep in" room where there is a full size bed and bathroom similar to a hospital room. It was nice. We had Teak in there with us. Got our first little taste of what is was like to be parents of a newborn. Yikes. Especially nursing. Goodness, they weren't kidding about eating every 2 hours.
His little white crib, bed monitors and all. He still had to be hooked up to the monitors but it was for his own safety. It was frustrating though because it was a travel monitor so it sat under his crib and kept going off with every little movement. So it made you think something was wrong with him but nothing was wrong. We figured out which button to push to make the sound go off. I know it sounds bad but I promise we knew he was okay first. Plus, the nurses see it on screens outside. They don't need the sound. It was very sensitive to minor movement and he was moving a lot.

Alright, so we had a little scare just after Teak's surgery. The 2nd night he was in the NICU, Chad got a call early in the morning around 5ish from the on call doctor there stating that Teak had some episodes. They weren't sure if they were seizures or what. He would clentch up with his arms up but still bent and arch his back and essentially hold his breath or stop breathing. The first time the nurses had to give him air through a baby sized air bag press thing (not sure what this is called). They had a neurologist come and take a look at him. He had maybe a couple more, not as severe. So they scheduled an EEG.

Chad and I actually witnessed one together. Our nurse had gone to lunch and we had just gotten back from eating. He tensed up just as they had stated he was doing and his monitors start beeping and sounding off. His skin got really pale and his lips starting to turn blue, literally blue. I can still see the image in my min and forever will. It was one of the scariest moments of my life. I immediately thought to touch him but can't even remember if I did or not because no one was coming in the room. I thought surely the nurses hear this and know that our nurse is out right now. Why in the world would they not respond?! Chad runs out of the room as I follow. He yells "HEY" down the hallway. At this point, it feels like a scene from a movie or an episode in Grey's Anatomy. I just see blue scrubs coming running down the hallway, maybe 4 or 5 but it seems like 15 nurses. He is coming out of this episode by now but they all start checking it out. Where am I...hovered in a corner of the hallway shaking, crying. Chad comes to embrace me. One of the nurses comes out of Teak's room saying, "Where's mom, where's mom?" I turn to her and she gives me a big hug and says its going to be alright. She understands its scary...

So now that we have witnessed it, it really puts a perspective on things. The EEG that they do doesn't really show any signs of seizure activity but it isn't exactly clear. So as a precaution they decide to start him on seizure meds, phenobarbital.
Little side note: He is already doped up on fentanyl for pain from the surgery. When we speak to the neurologist, he states that these episodes could be seizures or they could be a reaction to the pain from the surgery or even from the pain meds. This is not uncommon for newborns to react this way and then never have any more episodes. He says that starting him on the phenobarbital wouldn't hurt anything, however, it can make him very drowsy for quite some time.
Ugh, seriously. Fine, just do it. The first dose of it they have to give him in two different doses. And it does knock him out. He is so tired and drowsy. I have never seen a human being sleep that rock hard. Poor thing, it is kind of heart breaking. Then after a day or so they do another EEG. They are about to give him a 3rd dose. Literally, the nurse has it in her hands, and the neurologist's nurse practitioner runs in the room and says to stop don't give him anymore because the EEG was clear. The nurse asked for it on paper and they go and sort it out. He never had another episode after the 3rd day he was in the NICU.

The doctors in the NICU do rounds everyday. If you are in the room then they will open up the door so that you can hear them discuss your child. So the main NICU doctor is a young guy. I don't catch his name until the end of our stay so always call him the young doctor to Chad. He is pretty straight forward but I have to say that I wasn't very nice to him the first time we spoke because of some questions that were being answered with doctor talk instead of laymen terms.
So, one day at rounds, he is commenting on one of the other doctors notes about the episodes and states that he thought it was all because of a reaction to the fentanyl, the pain meds they had Teak doped up on. Sounded like the other doctors didn't want to say this for sure but that was his opinion. My thinking, he sees babies all day almost everyday, I liked his reasoning. If only babies could talk...

When you have spina bifida myelomeningocele you can also develop hydrocephalus, or fluid on the brain. It is basically spinal fluid that is building up and not draining correctly for certain reasons. Teak has yet to develop this to this day, praise the Lord. However, a few days after the surgery, his back starts to swell up a bit around the incision. Our neurosurgeon and one of his nurse practitioners comes in and take a look at it and explains what is happening. They stated it is just building up and this is basically normal but they have to watch it. A couple things, it could be absorbed back into the body, it could stay this way then he would have to have shunts placed to drain it or it could cause fluid to build up in the brain and he would have to have shunts in his head. So they calmly state they will just watch it for the next few days and schedule another EKG. This stresses me out a bit.
I will tell you this though, that night when Chad came to pick me up he could tell I was a bit stressed. You have good and bad days as anyone would if your child is in the intensive care unit especially if you just had him and your hormones are whacked out. So, I told him about the fluid and what Dr. George stated. I told him that we needed to pray about it together. He said, well then lets do it. So we placed our hands on Teak's back and I prayed out loud. All I remember saying was that I knew we had asked a lot of the Lord in the last few months and that he had delivered on everything and more, we were so thankful, but that we were asking him to please remove the fluid from Teak's back, etc.
I tell you what, that fluid started going down and never re-appeared...now, you can say that could have happened if we had prayed or not but I know what I know and I know that God removed it.
Teak has yet to develop hydrocephalus. I say yet because they state that they can develop it up to even adulthood. However, spina bifida babies tend to develop it within the first 2 weeks of closure then up to 1 year. This is the most common time frame. It doesn't mean you are in the clear after a year but the percentages are lower. I have seen a couple different ratios but I believe that 98% of people with spina bifida myelomeningocele develop hydrocephalus and have to have shunts. Correct me if I am wrong, it varies in my notes.

Our time in the NICU was shorter than a lot of other SB families but we had our trials and tribulations. Every SB baby, child, adult is different. There truly is not a standard or an index on what will happen and when and how extreme the SB will be but they are all very special children, people and we are all blessed to be a part of their lives.

Teak now has physical therapy once a week. Simone, our PT, is wonderful. We love her. She is great with Teak. Teak moves his legs like a "normal" baby. He starting sitting up around 5 months old. He has had great neck strength since he was 1 month old. He is continuing to meet all the "normal" developmental milestones of a baby. He is full of life. If you could only hear this boy's laugh, you would melt like butter on hot corn on the cob. He is also very serious and has been scowling his eyebrows since he was in the womb. I promise, we have the 3D pics to prove it. He is just taking it all in, very smart boy, watching, learning, strong minded, strong willed.

Finally

Finally, mother and baby together!!! I was released from St. David's on October 30th. Two and half days longer than I wanted but knew it was necessary. Since I had to have a scheduled c-section and knew I would several months prior to the delivery, I told my OB/GYN and her nurse practitioner that I wanted to get out of the hospital as soon as possible. They kept telling me oh, a c-section will keep you in there at least 2 - 4 days and typically the latter is more common. Well, I didn't care and didn't want to hear it. I warned them that 2 days was going to be long enough...

By the middle of the 2nd day I was up and walking around the room and hospital. Slowly walking but walking. Walking is actually good for recovery. I am serious. It is. It helps your body to recover and start to mend itself back. I am not saying walk a mile but get off your butt and take a little stroll.

My mother-in-law had a c-section over 20 years ago and kept telling me how HORRIBLE it was and how painful, etc. But I think I have a different level of pain tolerance than she does because it hurt but didn't hurt that bad. Yes, I know they had me doped up a little but I didn't even take all my pain meds. Plus, in all honestly, everyone is entitled to their own experience. You can't compare your experience to anyone else because we are all different human beings. Plus, I had other things on my mind...my son who was undergoing major back surgery at less than 24 hours old.

Alright, so my doctor, Dr. Merritt, is wonderful. I have been going to her for 18 years. She definitely made a note in my file that I wanted to get out of there. I made sure all my nurses knew as well. So Saturday roles around, it is past 10 which means that I have been there over 2 days now because we had arrived around 7am on Thursday so I am getting ansy. I have already showered by myself, walked down the hall a couple times getting ice and water. Pumped a few times and ready to go. I couldn't concentrate on the TV, magazine or book that I had in my room. I packed my bags, waiting. The on call doctor finally came in around 1pm after I asked my nurse to check up on the delay. He checked me out and said I was good to go. I called Chad as fast as I could and he said he was on his way from Dell. Thank God it was so close.

Gee, just walking from the parking lot to the NICU was a trek but a good one for me. It just took longer because you put put along because of the soreness. Seriously, walking from the parking lot into the front door, over the bridge inside, to the elevators to the 4th floor, then out of the elevators, down the hall of windows, into the NICU doors, wash your hands, dry them, use the de-germing jell, down the hall of all the rooms to the last one on the right. Number 19. My baby boy was in there, number 19, they had already placed his name on the door in big letters cut from stationary. The T was formed in the shape of a celtic looking cross. I loved it.

I honestly can't even remember if he was awake or asleep because I was son overwhelmed with emotion of finally seeing my baby boy. We had spent 9 months together, just the 2 of us and now had to spend 2 1/2 days apart. I leaned over and started talking to him and then the tears started. It was funny because Chad's reaction was to tell me it was okay and to not cry (he said it sweetly) but our bold red-headed nurse snapped back at him and said it was okay for me to cry that it was normal and good for me to cry.
You see, they wouldn't let anyone hold him, not even Chad, until I got there to hold him for the first time.

After Teak's surgery, Chad would put the phone up to Teak's ear several times so that I could talk to him. It was so hard to talk to my boy and be so far away. I felt angry with Chad and his mother for being there even though I knew it was good that they were there with Teak. But now I could be here with him. I had been pumping so I brought some of my milk with me, it wasn't much but what can you do. My milk took a few days to come in. I just kept on pumping.
The day nurse on Tuesday said that I could go ahead and try to get him latched on and she would help. Ouch, he seems to latch pretty good so she let me nurse him. It hurt but sometimes things in life hurt to get to the good part. I was just happy to be there all day with my baby boy. Doctors coming and going. Nurses on their little schedules.

October 28 & 29, 2010 - Delivery & Surgery Day

A scheduled c-section is so weird to be honest with you. You feel odd walking into a hospital getting all done up for surgery to have a baby. Just seems so un-natural to me. I told Chad that I still don't feel like I birthed my child, you know, that I actually gave birth to Teak. No, I don't have issues with it but feel that it is odd that my doctor cut me open and pulled my child out of me. Just stop and think about it. It is weird. Enough about that...

So we get ready for the c-section and I go into the operating room. The anesthesiologist gives me a spinal for the surgery. I lay down and start to not feel my legs, etc. Then I start to not feel my middle then I get tingly in my hands and my throat...at this point, I start to realize this is not okay and mention to the doctor that I am about to pass out. She explains to me that it meant that my spinal was really good and was moving up my body. She did something to stop it and it felt a lot better after that. This was the worst part of having a c-section for me.

Delivery went well besides the spinal scare. They pull and tug and here comes Teak. Redheaded and 8 lbs 8 oz, 20.5 inches long. The St. David's NICU doctors and nurses take him and start to wipe him down. They check out his back but still seem rough with him. Ugh.

I finally get to see my little boy and give him a kiss. I can't believe he is actually here. This is really happening. The day we had been waiting for months.

Anyone who has ever had a baby that needs special care as soon as they are born knows what it it like to have their baby taken from them as soon as they were born. The issue here was that he was going to be transported from St. Davids to Dell Children's within 24 hours to undergo major back surgery. We were prepared for this. You honestly have to mentally be prepared that your child will not be with you. You have to morn the fact that this was NOT your birth plan and you will not have the same old stories like your friends/family. But then you realize that is okay. Why would you want your story to be like theirs anyway? Ours is different and different is good. Honestly, you just let your self get mad, sad but you stay strong in the midst of it.

Chad runs off with the baby. All of our family is waiting to hear about Teak and if he is as healthy as he could be, etc. Of course family drama is going on in the lobby but that seems to be normal in our lives these days. Baby brings out the worst and best in people. :)

Chad grabs his mother to see Teak in the NICU, then takes my mother, then my father and then his father. Except me, Teak's mother, the one who nurtured him in her body for 9 months and just underwent major surgery for him. So I am in recovery and finally get wheeled back to my room. All family members are there and we gather in my room. Talking, etc. I tell them about my experience with the spinal. Fun times. They told Chad that Dell was already sending a transport for Teak today. Wow, so fast. I thought they might keep him at St. David's another day but no biggy. The faster they get his repair surgery done the better in my mind. They did promise to bring him by the room before he was rushed off. Fancy guy, already going on his first car ride before he is even a few hours old.

They finally bring him by around 1:30pm. Yes, I started worrying because they originally stated noon. He is in the see through incubator. This plump baby in the incubator. For some reason, they placed his IV in his head! What the heck, can't imagine that feels good. I get to reach my hand in and rub his arm but that is about it. I of course tear up, it is so sad to see him in there all by himself. Ugh, I knew this day would come and they would have to transport him to another away from me and I knew it would be hard. I was prepared for it but you can prepare for things but it doesn't mean that it isn't going to be hard or hurt. Just like a marathon that you train for, you prepare not just physically but mentally but while you are running those long distances it is still hard on your mind and body.

Chad and his mother follow the transport to Dell while I stay at St. Davids. I have great nurses at St. Davids that really take care of me. They wonder where my baby is and I explain that he has Spina Bifida, etc. They are sympathetic and understand that I am ready to go and see no reason for me to be there any longer than I need to. My doctor had originally stated 2 to 4 days but I kept telling her that 2 days was as long as I needed to be in the hospital because I was needed somewhere else.

So Teak had surgery before he was even 24 hours old. I wanted to know everything. I didn't want to be left out of anything. This was my son who I have spent 9 months with and didn't want anyone else except my husband to know everything going on with the surgery and the NICU, etc. This presented some problems because my mother in law was in the midst of things to be supportive. It was hard for me though because she had such a hard time when Teak was diagnosed with SB months before. She was very helpful and ended up taking over the night shift at the NICU so that Teak was hardly ever alone.

We had met the neurosurgeon a couple times before so that we became comfortable with him and the surgery. We had also spoken to a few other SB families about him and they were always so complimentary. He seemed to be a legend. Dr. Timothy George. He was very personable yet very intelligent which you don't always find as a mix in a good doctor. We knew he was the right man to repair our son's back. I asked Chad to call me when he was talking to Dr. George before the surgery so that I could hear what was said, etc. Instead, Dr. George got on the phone and explained things to him. I asked a couple questions as well. He is very mater of fact but nice about it. We like him...

Sitting in my hospital room by myself that morning was surprisingly peaceful. Again, so many emotions are running rampant through your mind, body and soul during these times. It is so indescribable. I can only imagine that parents who have gone through something similar can relate. Prayer is the only thing that can help you through it, honestly. Pray for your husband to continue being strong and patient and loving through it all. Pray for the doctor who is cutting open your baby boy and handling precious parts of his insides that most people don't even think about or realize they have and use everyday. Parts that are necessary to walk and pee. Things that we do everyday and take for granted.

So from there, Chad waiting in the waiting room downstairs at Dell until the surgery was over. He said that Dr. George told him that it went really well. The spinal cord was still intact and there wasn't a lot of tethering of the cord as well. He also stated that there wasn't a lot of nerve damage. This all sounded so wonderful. He got to go see Teak who was now going to be placed in his own NICU room. Now it was just recovery and waiting to see what happens and how he develops.