Wednesday, September 29, 2010
We have been home now for about three months. It has been great. About three to four weeks ago I started noticing changes in his head. It seemed to be getting bigger and it felt really squishy. He had an appointment with his high risk pediatrician who ordered an MRI. He was unable to have the MRI because his oxygen saturation level was to low to be sedated and so he had a CT scan instead. Within about an hour of the scan he saw the pediatrician who called the neurosurgeon, who immediately came and evaluated Chandler, and surgery for a VP shunt was scheduled to drain the excess fluid from his brain. On September 20th this surgery was performed and after four days in the hospital we are back home again. It is remarkable the difference in his head. He is recovering well and I hope to see more improvements as he feels better. We pray that we are done with surgery. It is not easy watching your child go through this and feeling like you cannot protect them.
Well since its been like four months, I thought it must be time to update. Chandler could never quite manage to take all eight bottles a day like he needed to, to get to come home. So after about a month of practice with little improvement it was decided that the best thing was for him to have a G tube placement. At the same time they also decided to do a procedure called a fundoplication which involves taking some of the stomach muscle and tying it around the esophagus. This will not not allow any thing in his stomach to ever come back up. This means that he will never be able to spit up or vomit. This procedure helps with his reflux. So finally on June 10th we were able to bring our baby home, after 96 days in the NICU.
Friday, May 7, 2010
This is the first time Jimmy got to hold Chandler. It was his first time to take a bottle (he was almost 8 weeks old). It was his first time to get to take a bath in the tub instead of a sponge bath. He loved it, he even fell asleep. He is now two months old I can't believe so much time has passed. He is doing good, he is completely off the oxygen. The only attachments he still has are the monitors and his NG tube. He weighs 5lbs 9oz so he is finally growing good. Before he can come home he has to take 8 bottles a day and right now he takes 2. He doesn't do that great with bottle feeding, just real slow. More practice. His last head ultrasound showed that his hydrocephalus is increasing due to a blockage between the 3rd and 4th ventricle in his brain. He has an MRI today and we will need to meet with the neurosurgeon to see when they will open it up. He also had eye surgery almost two weeks ago, and every thing is looking good. He got to be in a commercial advertizing for a local childrens miracle network telethon, so that was exciting. He has such a sweet personality. He is very easy going. I get to hold all the time and he just looks around, when he hears the monitors beep or other babies cry he raises his eyebrows trying to figure out what is going on. We just can't wait to bring him home so our family can be together again.
Wednesday, April 14, 2010
Progress again. Chandler is doing good. On Easter he was taken off the ventilator and put on the C-Pap. That same day his heart rate started to drop randomly. It would usually come back up quickly. The Dr. felt that he had reflux, but was trying different things to help. Nothing seemed to be helping. Then they ran labs cause he didn't seem to be feeling good. The labs came back negative. The baby that had shared his minimal stimulation room for almost 4 weeks suddenly passed away, so he got moved out into level two, which is good but his heart rate would not stablize. After a few days they ran labs again and this time they came back positive for infection which turned out to be a urinary tract infection so they started antibiotics. This still did not seem to help his bradycardia. Finally they started him on a medication for reflux and it seems to be helping. So today he got taken off the C-Pap and put on a nasal canula. I get to hold him every time I go see him, which is now every three hours. I pretty much live at the hospital, but I am enjoying the time I get to spend with him. He now weighs about 4 lbs and 10 oz. He is so long, over 19 in. He cannot fit in preemie clothes, the sleeves are like 3/4 sleeves. so now we gotta buy bigger clothes.
Tuesday, April 13, 2010
Chandler is over a month old now so I decided to go back to the beginning. On the night of Friday March 5th I went to bed like any other night after a typical day. I woke up right around midnight with fluid running down my side. I wasn't really sure what had happened so I went to the bathroom and cleaned myself up. Jimmy was up getting ready to leave for work, so I told him what had happened. I didn't want to make a big a deal about it still not sure and partly in denial so I just told him not to go to far away. I went back to bed and I started having contractions, not real strong but consistant. About a half hour later I felt another gush of fluid. I called Jimmy, he in even more denial than I, told me to take a bath and try and get some rest. By this time I was pretty sure what was going on, but still not wanting to face reality decided to to wait a little longer. By the time I had another gush of fluid I was having contractions about 5 minutes apart. I called the hospital and of course they wanted me to come in, so I called my mom and dad who came right over. My dad stayed with my kids and my mom took me to the hospital. When we got to the hospital they checked me and confirmed that my sack had ruptured. The hospital we were at did not have a NICU so they did not want me to deliver there. They called for Aerocare to transport me to Lubbock. When I arrived in Lubbock Jimmy, my parents and Jimmy's parents were there waiting. When they did an ultrasound they determined that the baby was transverse so I would have to have a C-Section. The Dr. wanted to put off the delivery as long as possible so the baby could get the steroid shots needed to mature his lungs. By eleven o'clock that night I was having strong contractions about 3 minutes apart. They did another ultrasound to check the position of the baby and saw that he had moved to where his butt was above my cervix. The Dr. felt that we could try for a breach delivery. They took me into the operating room just in case. I was dilated to a 6 so they started pitocin. They tried three times to start and epidural then I started pushing. It wasn't long before I knew there was a problem. His legs and body came out fairly quickly and easily, but his head would not come out. It seemed like forever that the Dr.'s tried toget his head unstuck. It was very stressful and you could feel the tension. It was the worst pain I had ever experienced. They were trying to stretch me and they wanted me to be still. I remember thinking if they can just get his head out the pain will all be over. Then suddenly they decided to do the C-Section. They quickly put me under and even as I was breathing in the anesthetics I prayed it would work quickly because the pain was unbearable. I obviously don't know alot about what happened at that point. My doctor said she had me open in four cuts. She cut right through the muscle and everything. They somehow got the baby back up and out. When babies are born they are graded on a scale called apgar. At one minute after Chandlers birth he was a 0 on this scale which meant that he had no heart rate, no respirations, blue all over, and no response to pain. At 5 minutes he was a 1 and at 10 minutes he was a 2 which is the highest score. We know that he is a miracle and we are so blessed to have him in our lives and our family.
Wednesday, April 7, 2010
Chandler continues to improve. They were able to remove his ventilator and he now has a new tube called a C-Pap that blows oxygen up his nostrils. He is doing really well on that. He had an ultrasound done and they found that his Hydrocephalus had not gotten any worse so that is wonderful news. His heart rate keeps dropping so they are trying to get that figured out. He has hypothyroidism, but they say that is typical with premies. As you can see in the pictures he was able to get dressed one day and looked so cute, but he got too cold and had to strip down and get back in the warming bed. He is doing good with his feedings.
Wednesday, March 31, 2010
Monday Chandlers Dr ordered a CT Scan to make sure there was no bleeding or blockage in his brain causing the Hydrocephalus. When the the radiologist came back with his report he said there was no obstructions and he felt that it was not caused from hypoxia or lack of oxygen at birth, but that Chandler had meningitis in utero. So the Dr then ordered a lumbar stick to draw cerebral spinal fluid and test for any signs of infection. The sugar levels were elevated which would indicate infection. This would also explain my prematured labor. At this point the infection was cleared up because of all the antibiotics he had been on since birth. I am not sure what this all means concerning the hydrocephalus but he should have another head ultrasound soon and maybe we will have some more answers.
Sunday, March 28, 2010
This morning we were given the news that Chandler has Hydrocephalus. Which means that he has excess fluid in his brain. This was caused from the lack of oxygen during his traumatic delivery. At this point there is no pressure or swelling. There is no way to determine the extent of the damage right now or in the future. There is nothing that can be done to decrease the fluid or prevent the condition from worsening. We can only continue to pray and rely on our faith and hope. Chandler is such a blessing in our life and we are so thankful for him. We are also thankful for all of our family and friends and your prayers and support.
Friday, March 26, 2010
Chandler is getting better. His infection turned out to be pneumonia. It takes about 3 days for the culture to grow back enough to know exactly what is going on, but they put him on a broad spectrum antibiotic to kill what ever he had. He started to show improvement right away especially after a blood transfusion which pinked him right up, and in the past week he pooped (which is great for his digestive system and jaundice), He was taken off the biliruben lights. He was taken off the high frequency ventilator and put on the conventional ventilator. Which is good because he is able to move around more and does not have to be sedated. They also started feeding him again and we will see how that goes. Hopefully I will get to hold him again soon. Even though he has been improving rapidly, it has been a difficult week because we went so far back. I know that through prayer we have been able to make through all of this. Thank you all for keeping us in your prayers.
Thursday, March 18, 2010
As many of you know Chandler has had a bit of a setback and could really use our prayers. Last night his oxygen levels dropped way down and they determined that he has an infection of some kind. They put him on some different medications, including blood pressure meds and two different antibiotics. They also put him back on his high level ventilator. His color was really bad last night and he didn't look well at all. His little feet were cold because he was not getting the circulation that he needed. Whenever anyone would touch him his levels would drop even lower. His Grandpa was able to give him a blessing and this morning he is doing a little better. It is going to be difficult for his little body to now have to try to fight off this infection on top of everything else he is trying to do to get better, so please continue to pray for him and his family. So far the Lord has blessed us with miracles and we are so thankful.