myangelSGY
01-12-2008, 11:03 PM
Sara Grace came into our lives on July 24, 2007 by a planned C section. She has an older sister who will be 3 yrs. old in March. At about 3 1/2 months old I noticed her head being A symettrical and I already had her 4 month check up scheduled. I took her in and asked her pediatrician about it. He stated that it was probably the way I carried her in the womb and we would watch it. Two weeks later my husband and I agreed it was getting worse and I took her back. A 3D CT scan was taken and we got the results at 5:20 that afternoon. I will never forget that converstation, the way I felt. My heart stopped when I was told that her right Lamdoid suture had fused and what NS I wanted him to call. A week went by with me calling daily to see if they had spoken and what he had to say. My pediatrician finally calls and says that the NS agreed that the suture was fused but wanted to watch and see what happened. Everyone that I have spoken with all the research I have done say that early intervention is best. So we took her the Childrens Hermann Memorial in Houston for a 2nd opinion and they were wonderful, explaining everything, answering all 5000 of my questions and so caring and great with my baby. We met with the NS and were told it was Lamdoidal Synostosis and he wanted us to meet with the Plastic Surgeon and the cranio team. We have surgery scheduled for Jan. 18.
The week of Sara Grace's Surgery I was scared to death I still hadn't had a melt down but I knew it was coming. I couldn't sleep and spent alot of time on this sight. I packed praying that I didn't forget anything because nothing else would fit in my van. LOL The drive to Houston was long and not much was said. We went by and paid the deposit for Sara Grace's surgery and checked in at the hotel. Sara Grace and I stayed in the room while my mom, Lamar and Analyse went to Target to get a few things to keep in the room, we had a kitchenette in our room and that was wonderful. Our oldest, 3 yr. old Analyse called our room a little house and was very comfortable which made it nice. The night before surgery I didn't sleep and neither did Sara Grace I quess she could since my stress. She was talking and laughing all night. Thank You Lord for comforting her. She was so happy and all smiles.
DAY 1
We arrive at the hospital at 5 am. Sara Grace was sleeping. When she woke up she was her usual happy go lucky self. They took us back at around 6 am and she was still happy smiling and talking to her daddy and I. The anethesiologist came by and she talked about how they were going to put her to sleep and reassured us she was in good hands and that they would take very good care of her. Her Drs. came by and reassured us that everything would be fine and the surgery should take 3-4 hours and they would check in routinely and we were given a card to call whenever we wanted and check on her progress. Then the time came at around 7:30 they came and took Sara Grace from me and that moment will stay with me forever. I have never felt so helpless. The Lord once again comforted Sara Grace, she went to the nurse smiling and laughing and rubbing the nurses face. I OFFICIALLY HAD MY MELT DOWN!!!!!!! I have never done anything more difficult in my life. They called at about 8:30 and said they had began the surgery. I called a few times and were told everything was going well. They called at 11:30 and said they were closing and the surgery went great. The immediate weight that was lifted off my shoulders was amazing. I breathed a deep sigh of relief and Thanked the Lord for all that he had done. Dr. T came out and spoke to us and described what he had done. Sara Grace had an incision that went from ear to ear across that top of her head. The back half of her skull was removed, split into two pieces, cuts were made in both pieces ( to allow growth), he then remolded the pieces and connected them with 4 plates and screws that will all absorb within 18 months.
He said her head looked amazing and we could see her in about 15-20 mins.
When I saw her for the first time she was groggy and a little fussy. I tried to nurse her but she showed no interest. I sang her her favorite lullaby and she dozed off. They then transported us to PICU. Sara Grace seemed to be doing well sleeping alot. She still was not interested in nursing. Approximately an hour after arriving in PICU she began moaning and it just got worse they tried giving her Morphine but she was in excruciating pain. They called the Ped. Pain manangement, she came up and began pushing more morphine after about 1 1/2 hours she finally seemed calm. They began Motrin and Tylenol every 6 hours and Morphine every 3. Then after we finally get her pain under control all her IVs go crazy. The one in her left leg came out and all the fluid was going under the skin. She was lying in my lap and I noticed her leg felt very tight so we called the nurse. The other two infilterated so we had to go through getting stuck twice before the 3rd IV took. She finally settled down and was comfortable. She wanted to lay in the bed and sleep. The hospital we were at had a Ronald McDonald House on the floor of PICU. Lamar insisted I go lay down for a little while I finally agreed but that he had to call if she started fussing. I slept from 10-3, took a shower and went back. Lamar said the nurse we had was amazing. He was a male nurse that truly cared about what he was doing. He was able to get Sara Grace to take 5 oz. of formula. I was still trying to nurse but she was still not interested. She would take pumped milk or formula. Her swelling is starting but is not too bad.
DAY 2
One of my prayers was for mimimal swelling and Thank YOU Lord my baby girl can still open her eyes and she is smiling this morning. Her pain is under control, our iv is working and our heart rate is doing better as that was also a concern on Day 1 anytime she got mad it would go sky high. She is eating well, still not nursing but will take a bottle. We got moved to a room that afternoon and are doing good. We only had Morphine twice that day. She has scratched a spot on her eye with the plastic part of her IV so they put a sock over that hand. Yeah! She finally nursed that afternoon around 5 pm.
DAY 3
We had a good night. We both slept well. She was nursing like she had never stopped. They said we should get to go home. The Dr. came in and removed her bandage and that was the first time I had seen the incision. It was very overwhelming, I knew it was there but to see it was different. He said everything looked great and that we were free to go. She had not yet had a bowel movement so he said they would give her something and as soon as she did we could go home. I explained that I was leary to drive with her 6 hrs. in a car to a place where no one knew what the heck they were doing when it came to cranio and that we had our room booked for 2 more nights and so we would stay in town till then. He said to go ahead and bring her to his office before we left for a checkup. Sara Grace must not have wanted that med. for the bowel movement b/c she went before I could give it to her.
Day 4
We stayed at the hotel. Sara Grace is doing great her swelling is almost gone from her face. The back of her head is still squishy. Dad and sister are doing a little sight seeing.
Day 5
We went to see Dr. T and he said everything is looking good. We will head back to Monroe in the morning. We were hoping to get our molding done for our helmet, but we still have to much swelling so will go back next week.
Day 6
We headed home. Sara Grace did great on the ride. She is doing great with her pain. I gave her some Tylenol with codeine before the ride. We are scheduled to go back on Jan. 29 for the molding for our helmet.
Day 12
Pilots for Patients flew us out for our helmet molding. This is a great organization who fly people to their medical appointments for free. They will be flying when available and weather permitting back and forth for our helmet fitting. pilotsforpatients.org The molding went great, OH what a process. We should get it in 7-10 days.
Feb. 8
We get our helmet. It has to be worn 23 hrs. a day. The first night was not plesant. I finally gave up around 2 am. Then after that night she wears it with no problems. We will have to go back every 2 weeks for adjustments. We should be in it 2-3 months. Her head is looking GREAT!
The week of Sara Grace's Surgery I was scared to death I still hadn't had a melt down but I knew it was coming. I couldn't sleep and spent alot of time on this sight. I packed praying that I didn't forget anything because nothing else would fit in my van. LOL The drive to Houston was long and not much was said. We went by and paid the deposit for Sara Grace's surgery and checked in at the hotel. Sara Grace and I stayed in the room while my mom, Lamar and Analyse went to Target to get a few things to keep in the room, we had a kitchenette in our room and that was wonderful. Our oldest, 3 yr. old Analyse called our room a little house and was very comfortable which made it nice. The night before surgery I didn't sleep and neither did Sara Grace I quess she could since my stress. She was talking and laughing all night. Thank You Lord for comforting her. She was so happy and all smiles.
DAY 1
We arrive at the hospital at 5 am. Sara Grace was sleeping. When she woke up she was her usual happy go lucky self. They took us back at around 6 am and she was still happy smiling and talking to her daddy and I. The anethesiologist came by and she talked about how they were going to put her to sleep and reassured us she was in good hands and that they would take very good care of her. Her Drs. came by and reassured us that everything would be fine and the surgery should take 3-4 hours and they would check in routinely and we were given a card to call whenever we wanted and check on her progress. Then the time came at around 7:30 they came and took Sara Grace from me and that moment will stay with me forever. I have never felt so helpless. The Lord once again comforted Sara Grace, she went to the nurse smiling and laughing and rubbing the nurses face. I OFFICIALLY HAD MY MELT DOWN!!!!!!! I have never done anything more difficult in my life. They called at about 8:30 and said they had began the surgery. I called a few times and were told everything was going well. They called at 11:30 and said they were closing and the surgery went great. The immediate weight that was lifted off my shoulders was amazing. I breathed a deep sigh of relief and Thanked the Lord for all that he had done. Dr. T came out and spoke to us and described what he had done. Sara Grace had an incision that went from ear to ear across that top of her head. The back half of her skull was removed, split into two pieces, cuts were made in both pieces ( to allow growth), he then remolded the pieces and connected them with 4 plates and screws that will all absorb within 18 months.
He said her head looked amazing and we could see her in about 15-20 mins.
When I saw her for the first time she was groggy and a little fussy. I tried to nurse her but she showed no interest. I sang her her favorite lullaby and she dozed off. They then transported us to PICU. Sara Grace seemed to be doing well sleeping alot. She still was not interested in nursing. Approximately an hour after arriving in PICU she began moaning and it just got worse they tried giving her Morphine but she was in excruciating pain. They called the Ped. Pain manangement, she came up and began pushing more morphine after about 1 1/2 hours she finally seemed calm. They began Motrin and Tylenol every 6 hours and Morphine every 3. Then after we finally get her pain under control all her IVs go crazy. The one in her left leg came out and all the fluid was going under the skin. She was lying in my lap and I noticed her leg felt very tight so we called the nurse. The other two infilterated so we had to go through getting stuck twice before the 3rd IV took. She finally settled down and was comfortable. She wanted to lay in the bed and sleep. The hospital we were at had a Ronald McDonald House on the floor of PICU. Lamar insisted I go lay down for a little while I finally agreed but that he had to call if she started fussing. I slept from 10-3, took a shower and went back. Lamar said the nurse we had was amazing. He was a male nurse that truly cared about what he was doing. He was able to get Sara Grace to take 5 oz. of formula. I was still trying to nurse but she was still not interested. She would take pumped milk or formula. Her swelling is starting but is not too bad.
DAY 2
One of my prayers was for mimimal swelling and Thank YOU Lord my baby girl can still open her eyes and she is smiling this morning. Her pain is under control, our iv is working and our heart rate is doing better as that was also a concern on Day 1 anytime she got mad it would go sky high. She is eating well, still not nursing but will take a bottle. We got moved to a room that afternoon and are doing good. We only had Morphine twice that day. She has scratched a spot on her eye with the plastic part of her IV so they put a sock over that hand. Yeah! She finally nursed that afternoon around 5 pm.
DAY 3
We had a good night. We both slept well. She was nursing like she had never stopped. They said we should get to go home. The Dr. came in and removed her bandage and that was the first time I had seen the incision. It was very overwhelming, I knew it was there but to see it was different. He said everything looked great and that we were free to go. She had not yet had a bowel movement so he said they would give her something and as soon as she did we could go home. I explained that I was leary to drive with her 6 hrs. in a car to a place where no one knew what the heck they were doing when it came to cranio and that we had our room booked for 2 more nights and so we would stay in town till then. He said to go ahead and bring her to his office before we left for a checkup. Sara Grace must not have wanted that med. for the bowel movement b/c she went before I could give it to her.
Day 4
We stayed at the hotel. Sara Grace is doing great her swelling is almost gone from her face. The back of her head is still squishy. Dad and sister are doing a little sight seeing.
Day 5
We went to see Dr. T and he said everything is looking good. We will head back to Monroe in the morning. We were hoping to get our molding done for our helmet, but we still have to much swelling so will go back next week.
Day 6
We headed home. Sara Grace did great on the ride. She is doing great with her pain. I gave her some Tylenol with codeine before the ride. We are scheduled to go back on Jan. 29 for the molding for our helmet.
Day 12
Pilots for Patients flew us out for our helmet molding. This is a great organization who fly people to their medical appointments for free. They will be flying when available and weather permitting back and forth for our helmet fitting. pilotsforpatients.org The molding went great, OH what a process. We should get it in 7-10 days.
Feb. 8
We get our helmet. It has to be worn 23 hrs. a day. The first night was not plesant. I finally gave up around 2 am. Then after that night she wears it with no problems. We will have to go back every 2 weeks for adjustments. We should be in it 2-3 months. Her head is looking GREAT!