our little blessing
Our son Teak Joseph Head was born on October 28th, 2010. He has been a blessing in our lives even before he was born. We truly feel honored that the Lord chose both of us to be the parents of this special boy. Teak was born with Spina Bifida Myelomeningocele and a minor hearing loss in both ears. Both un-related to each other. These are the curve balls of life. You never know when they are coming, you just keep your head up, step up and hit back with prayer, strength and love.
Welcome to our lives. Teak will one day change the world for the better just the way he has changed us.
Welcome to our lives. Teak will one day change the world for the better just the way he has changed us.
Thursday, April 28, 2011
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.
Thursday, April 21, 2011
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.
Wednesday, April 20, 2011
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.