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.

October 28, 2010

Today's the day, the inevitable. Our scheduled c-section. I was walking into St. David's pregnant, baby inside me and will walk out in 2 days without baby.

We had prepared ourselves for this day for a few months now and were so excited that the day was finally here. We knew it wouldn't be easy but we had each other and we couldn't wait to add one more to our family. We knew there would be tears; tears of joy, tears of sadness, tears of worry, tears of relief. Tears that would come when we didn't expect them. We couldn't wait to meet the love of our lives and smile and kiss him.

All these tears and smiles were for one precious person, Teak Joseph Head born October 28th, 2010, at 9:46am. Weighing 8 pounds, 8 ounces, 20.5 inches. Beautiful red-headed boy, nice and plump and strong.

Ear oh ear...

Oh ear, oh ear! A lot of people don't know the facts about Teak's ears so here goes.

Teak failed his infant hearing screened when he was in the NICU. They did it 3 times! The third time before we left the hospital, his left ear passed but his right ear still didn't. They kept stating that it could be just because he had fluid in his ears from birth (c-section baby) so not to worry but that we would need to have an audiologist do a hearing test on him at Dell.

So in December we went into Dell Children's Hospital and met with Liz, the audiologist there, and she tried to test his ears. They told me to keep him hungry and tired. Let me tell you, that was a fun morning. I kept him as hungry as I could and he fell asleep in the car. Thank goodness, Dell is only 10 minutes away. Liz is actually happy that he is asleep so that she can start testing. She keeps him in his carrier, starts to attach electrode things to his head and begins the testing.

Side note: She asks why we are there, I explain that he basically failed his infant hearing screen except the left ear. We know he hears because he startles at sounds, etc. I also tell her that I must mention that my grandfather (mother's side) had to get hearing aids when he was around 20 years old and supposedly his mother had to get them around the same age. Also, grandpa had a sister who was born deaf. She nods her head. Then she ends up asking why he was in the NICU and I explain that he has Spina Bifida, etc.

Alright, so she is testing him and has her computer screen up with all these little graphs moving. I just kind of sit back and watch. He starts to stir and then eventually wakes up before she can finish. I am breastfeeding so brought a bottle of breastmilk to try to feed him and try to get him back to sleep. They have to be asleep in order to finish the because the stirring and even eating is too loud and makes the test inconsistent. He falls back to sleep in my arms so she decides to try the other ear and begins testing, he wakes up again before she can finish.

The results are inconclusive at this time and he is going to have to go back in for testing and they will have to sedate him the next time. Ugh, not so happy about that but it seems to be something they do all the time when necessary and I trust the people at Dell.
She does mention that our son hears but that there was a potential delay at lower levels on the left side and right side. She stated it could still be fluid in the ears so we had to go see a pediatric ENT doctor to have his ears checked.

We were talking while she was doing some of the tests and kept saying that she really loved how I was with Teak. She thought that I must have other children the way that I handled him and spoke to him. She said that I didn't act like a new mom but like an experienced mother. That meant a lot to me. I didn't know how else I would act but it felt good to hear that especially after the past month had been for me. She really felt impressed at my reaction to his SB diagnosis. He was doing so well and we were so thankful to the Lord. Ah-ha, she said. That is why you are this way. You have faith. No wonder.
How else can you be, I think.

So we go to the ENT doctor and she stated that Teak does not have fluid in his ears.

So back at Dell again for another hearing test in the beginning of March. This morning all I am doing is having little discussions with God. Yes, I have faith and believe that Teak is the most special little being in the world but he already has Spina Bifida, please Lord, don't give him hearing loss. He is special but people on this earth are mean and I don't want him to have to deal with anything else...
The most nerving about this test was that they had to sedate him. It was so sad, he had to drink this orange stuff then fussed a little and fell asleep. It was just sad and unnerving but I trusted the nurse who watched over him and trusted Liz. I couldn't stay in the room with him so I had to go to the waiting room. They give you a pager so you can walk around. I decided to walk around for a bit b/c she said it could take up to an hour and a half.

The diagnosis: Well, God had another plan. Teak was diagnosed with mild to moderate hearing loss. His left ear is better than his right ear. The audiologist explained it to us that he hears but he doesn't hear certain sounds very well unless they are louder. She recommended he get hearing aids before he was 6 months. She stated that we don't have to listen to her recommendation but that it could effect his speech. Then later on when he is not speaking correctly we will think we need to correct his speech but that wasn't the initial problem, it was because he was not hearing the words correctly. So in order for him to learn to speak words correctly the hearing aids would help. We may say THROW to him but he only hears ROW...

My initial thought was that it was crazy to think he needed hearing aids. What in the world was she talking about. He could hear so what was the use. He reacted to the sounds when they were louder so I could just speak louder or keep him by my side. He was already right next to me most of the day while I was holding him. While speaking with her I couldn't hold back the tears. I just hated that we were adding another disability to this beautiful perfect boy. Lord, he already had Spina Bifida, why did we need to tack this on? I truly believe it was not a result of his SB, that it was genetically from me. I must carry a passive gene from my grandfather. Those thoughts are scary as well because this could also happen to another child if we chose to have one. They could even be deaf like my great aunt.

I was angry with God for a couple days, yelling at him and just purely angry. Honestly, I have to say that I was felt a little more upset about this diagnosis than the SB. Maybe because I knew it was my fault where the SB we had no idea where it came from. I did get over it after a couple days. I apologized to God and felt comfort in the diagnosis.
I know that He specifically made Teak to be a special boy. More special than any of our friends' and families' babies. (Sorry guys!) But we were chosen and Teak was chosen and he is only going to be a better person because of it all.

What 's in a Name?

My wonderful grandfather, Kenneth Daniel Bourgeois, died April, 2010. I was about 2 months pregnant. It wasn't a big surprise when he passed away because he had been in the ICU 3 weeks prior but it still broke my heart. All I could think about was how my grandfather wasn't going to meet his 1st great grandson.
My grandfather and I shared a birthday and I always loved it. I was born on his birthday and named his favorite name which happened to be his grandmother's name, Abigail. We always had a great bond.
While we were in Slidell LA for the funeral, I pulled out Mimi and Papa's picture albums from her guest room closet. I loved looking through them. All the pictures of my sister, brother and I growing up and hanging out at their house in Slidell, our old house in Houston and our house on Allston. It is so weird looking at old pictures. They bring back memories or just remind you that you used to be younger. I also pulled down an album of Papa's family, you know where the pictures look sterile, black and white and they don't smile. They showed a family tree going way back and I saw the last name Keaton and thought it was a good strong name. This was also the lineage of my great great grandmother Abigail who I was named after.
Before I even got pregnant, I had always liked Mimi's maiden name Turner. It would be unique as a first name. My thoughts were that it could honor Mimi as well as her brother, my great uncle Johnny.
On our long drive back to Austin from Slidell, names were running through my head, girl and boy. I combined the names Turner Keaton. I kept thinking we could officially name him that then nickname him something like TK or Teke. Well, once we got home, I sad down and wrote out some names that I thought about including the above and left it alone.
Then the fateful day came and went when we found out about our baby boy's Spina Bifida and we decided that we needed to go ahead and name him. So I pulled out the list (it was on my computer and I had been adding to it) and started reading off the names I had. There were all kinds on there. I come to the name Teke and read it out. Chad stops and smiles and says he likes that. You can tell he is thinking about it. I rush to explain that it came out of the full name Turner Keaton and was intended to be a nickname.
After trying to persuade him towards my family names, we come to a decision. He isn't a fan of Keaton and we realize that Turner Head doesn't sound the best so we settle on Teak and decide to spell it like the wood. We look up the meaning of Teak and read about the tree that Teak wood comes from and are truly convinced this is our son's name.
The trees that Teak wood comes from grow very tall and are very strong durable trees similar to the wood. They make sap that helps fight off diseases. Teak wood is used to make outdoor furniture as well as fancy boats. It seems to be able to withstand all weather. What a great name to use for a strong boy. His middle name Joseph is Chad's middle name which came from his biological grandfather's name. Joseph in the book of Genesis also overcame great obstacles.
Now, looking at Teak I couldn't imagine his name being anything else. He is Teak Joseph Head and one day he will change the world.