Saturday, May 30, 2009
We got our insurance statement showing Nicholas' whole NICU stay today. We figured it would be over a million dollars. The total is $1,271,169.12. Thankfully insurance paid everything but our deductible and Medicaid picked that up. It is nice to see our tax dollars going toward a good use.
Friday, May 29, 2009
Today is the end of my maternity leave. It is going to be so hard to leave Nicholas on Monday but he will be in good hands with Daddy. It is going to be hard on Mark and me because I will be working during the day and he will be working nights. We will only see each other 2 days a week besides the 5 minutes between the time I get home and he leaves for work. Nicholas can't go to daycare so this is really the only option we have right now.
We have accepted the fact that he is deaf. It is really a bummer but what can we do. We are grateful that he is even alive and made it through so many road blocks so far. There are so many other families that have lost babies to prematurity that I don't want to feel sorry for us when we witness a miracle every day. Several people have already told us that Cochlear Implants are wonderful and you wouldn't even know the child is deaf by listening to them communicate. I called the special needs coordinator at the pediatrician's office and she said that the doctor in Columbia is great but he doesn't accept Medicaid. Nicholas will definitely be able to keep medicaid with this new disability so that is one plus should we ever lose insurance. If our insurance doesn't cover the implant we would have to pay out of pocket in Columbia. So we are going to go to Charleston and have it done at MUSC- Medical University of South Carolina. The doctor there is also known as being the best in the country for what he does. She also said that insurance companies and Medicaid require that they try hearing aids first. The hearing center told us that yesterday too but they also said they don't think they will help because if he can't hear, amplifying the sound won't help. But, during the hearing aid trial he will get closer to a year old and should be able to get the implant ASAP. So as soon as I get the referral letter from the hearing center I will make an appointment at MUSC.
Thursday, May 28, 2009
We had the auditory brain stem response test today. First the doctor checked for fluid in his ears. He did not have fluid but he had a lot of wax. They had to suck that out and he screamed bloody murder. Poor guy. Then we had the hearing test. Nicholas did not hear anything. The test only goes up to 85 decibels and there was no response at that level. So that means he has severe to profound hearing loss. Basically he is deaf. Now we can go to a specialist for an evaluation about a cochlear implant. Hopefully he will be a good candidate for that and that is what we are going to try to do. They said that he should hear on a normal level if he can get an implant. The other option is for him to communicate by sign language. There is a doctor in Columbia who does the implant but Nicholas will have to be at least a year old. They also might try hearing aides first but since he didn't respond to the test today they probably won't work.
Wednesday, May 27, 2009
I had our WIC appointment today to get formula vouchers. It is wonderful that Nicholas qualifies for this program because he is a preemie but I am not going back to the health department. I had an appointment at 8:30 and it was 10 before they called my number. That was just the first station to do paperwork. Then you have to wait again to go to the lab to get blood drawn but I had a letter from the doctor saying Nicholas can't be there. Then more waiting and you see a nutritionist. That is as far as I got because we need a prescription from the doctor because they consider Neosure a special formula. There is more waiting after you see the nutritionist too. I would have had to go to the Dr. to get a prescription then go back to the health department and wait all over. We also would have to go there once a month for counseling and parenting classes just to get the vouchers. You have to wait in a room full of people and screaming kids- it is worse than the DMV. We don't have time for this and I'm not taking off work to save a few bucks. So much for free formula. I would rather buy it then have to go there again. If we couldn't afford it we would take advantage but it is more hassle than we need to deal with.
Other than that, Nicholas has found his thumb. He is starting to suck on just that but when he does his little fingers slip under his cannula so that comes out of his nose. We have his hearing test tomorrow and I hope they give us an answer about his hearing this time.
Monday, May 25, 2009
Nicholas is 3 months adjusted today. He is doing just about everything he should be at 3 months. He isn't tracking things with his eyes as well as the books say. I wonder if his eye surgery and not having peripheral vision could have something to do with that. We took him on his first trip to Charleston on Saturday. He is really well but started to get hot and fussy so we didn't walk him around The Battery and along the water. We drove past it instead. We went to the outlet mall and got lots of good deals. Yesterday we have Grandma and Grandpa Matthews over for a Memorial Day cook out. Tomorrow the early interventionist is coming by to do an evaluation and set up his physical therapy. Thursday is his hearing test and then I have to go back to work. :(
Friday, May 22, 2009
We took Nicholas to the neurosurgeon for a follow up today. Everything looks good with his shunt. We go back in 3 months for another check up unless something happens. We also went to the Endocrinologist for a NICU discharge follow up. It was mostly for his thyroid since most preemies have under active thyroids. He was on medication for it until the beginning of April. She looked at the blood tests from when he was in the children's hospital and thinks his thyroid is fine. She had blood taken just to make sure because it can take up to 6 weeks to see the real effect of not having medication for it. She doesn't feel like there will be a problem and we will get the results next week. We also asked about his growth. She agreed he is short- at the 3rd percentile for his adjusted age, but since he is growing it isn't anything to worry about right now. She said that if he stops growing or doesn't catch up by the time he is 2 there might be a problem. She said that our bodies are amazing and that when there is something wrong it uses it's energy for more important things like brain, heart and lung functions. He might have stayed at 19 inches for so long because of his last shunt not working correctly or it could just be a preemie thing. She also used his adjusted age for his weight and head circumference. He is at the 50th percentile for his weight and 25th for his head. She said he looks great. I really liked this doctor but hopefully we won't have to go see her again.
Tuesday, May 19, 2009
We took Nicholas to get weighed and measured today. He is 12 lb 3oz and 21 3/4 inches. He is following the growth curve and is almost at the 3 percentile for his actual age. We also met with the special needs coordinator to go over his plan. We were happy to find out that she has someone at the Medicaid office that can get that fixed for us. Nicholas automatically qualified for Medicaid based on his birth weight and our income didn't matter. They started it Dec. 1, 2008 but it really should go back to his birth date. We also found out that because he is on Medicaid he qualifies for WIC, which is the state's Women, Infants, and Children program. We should get vouchers to cover the cost of his formula. That is great!
Bella had to have her whole nail removed. They said it might not grow back. She seems like she is in a little pain because her tail is calm and not hitting everything in its path. She just wanted some attention yesterday- first she broke a picture frame, then her toe nail, then Mark's sunglasses while she was at the vet. I added some pics of our other animals. We have one more cat, Zoe, but she has issues and lives either under the bed or under the couch.
Monday, May 18, 2009
Not much has been going on. Nicholas is doing well and is holding his head up well. He is sleeping about 6 hours each night but likes to stay up late. I'm getting up early this week and an hour earlier next week to get ready to go back to work. We had Grandma and Grandpa babysit for us last Saturday so we could go to our friends' anniversary party. We had to call and check a few times but he did well and only had a lead go off on his monitor. They said that Bella kept a close eye on them and Nicholas. She must have been stressed. Poor Bella broke a toe nail so she is at the vet right now getting it fixed.
Friday, May 15, 2009
We have had a few lazy days at home without any appointments. It has been nice. We have to take Nicholas in for a weight check next week and see his neurosurgeon and an endocrinologist. We are going to the endocrinologist because he isn't growing like he should be and is pretty short for his age. Hopefully it is nothing and he will catch up on his own time. Here are some bath pictures- look no cannula.
Tuesday, May 12, 2009
Nicholas had his appointment with the pulmonoloist today. They hooked him up to a pulse ox and he was satting at 98. The doctor told us his lungs sound really good and we can turn his oxygen to 1/16 of a liter. We go back in a month and if he is satting in the high nineties he will discontinue the oxygen. He will have the apnea monitor for about a month more than the oxygen. He is having the equipment company come out and change the settings on the monitor. They are currently at 70 bpm for bradycardia and 15 seconds for apnea. He is going to have it changed to 60 bpm and 20 seconds. We only had one alarm since his shunt revision and it was a brady. The doctor said that because of his size and my due date he is old and big enough that his heart rate will naturally drop into the 60's when he is sleeping.
The hearing test was inconclusive. The machine couldn't get a reading. They think he has fluid in his ears and that is why they couldn't get a reading. The audiologist said that it is common for babies to have fluid in their ears but not have an infection because they are laying down a lot. So now we have to go back in 2 weeks and do a brain stem test. They will put electrodes on him and read the brain waves. He has to be asleep for this and they said to keep him up late and wake him up early for 3 days before the test. I don't think this is going to be easy but we will have to wait and see.
The swelling where his stitches were has gone down a lot today but not completely. We also visited the NICU and saw his primary nurse and nurse practitioner and several other nurses who took care of him. It was nice to see the people that made such a difference in our little guy's life.
Monday, May 11, 2009
We took Nicholas out for a little while yesterday and today. Yesterday we went to the outdoor mall and walked around and had lunch outside. Today we took him to the zoo and looked at the outside animals. He seemed to enjoy it. He is still obsessed with his hand and it is always in his mouth. He will also suck on our shirt if we are holding him. He started grabbing at the toys attached to his mirror last night. He rolled to his side this morning and he has learned how to take his cannula out of his nose and half the time it is up between his eyes.
We went to see the pediatric surgeon today and he is pleased with how his hernia has healed. We don't have to go back to see him unless something else happens. We also went to the neurosurgeon's office and saw the nurse. She took his stitches out and said his swelling looks fine and it could take a few weeks to go away. We go back next Friday to see the doctor. Tomorrow we go to the lung doctor and the hearing center.
Saturday, May 9, 2009
Nicholas turned 6 months yesterday. It is really hard to believe half a year has gone by. He had an appointment with the retina doctor for his ROP yesterday. The doctor said his eyes look great. We have to go back in 6 weeks and then we should be done with that doctor. We still have to go to a regular eye doctor and our first visit is in June. I talked to the neurosurgeon's nurse yesterday about the swelling around his stitches. She said that they have seen this happen a lot and it could take a few weeks for his head to heal and then it will stop. We go in on Monday to have his stitches taken out so we will see what the Dr. says. He might want to do another CT just to be safe. We haven't had any alarms with his apnea montior since coming home. He is also eating like crazy. He must be going through a growth spurt. Or, he might not have been eating well because his shunt wasn't working- hard to tell.
Thursday, May 7, 2009
We are back home after Nicholas' hospital stay. The CT scan on Monday showed that the shunt is working. He has a lot of swelling around the incision but I was told twice it is ok. I really don't want to go through this again any time soon. It is really hard to rest and recover at the hospital. He had a nurse, tech, and respiratory therapist come in every 3 hours so the poor guy never got any good sleep. It was hard on me too because I had to stay there the whole time. I only got 1-2 hours a sleep a night so it was really nice to be back home last night. One good thing about being there was we were able to try him off oxygen and be able to see his blood oxygen saturation. He was off it for about 9 hours and then de-satted while he was sleeping so he needed it turned back on. The RT talked to the lung doctor and he said if he goes 24 hours without oxygen we can discontinue it. We were told we can decrease his flow from 1/4 liter to 1/8 liter and turn it off when he is awake. We moved it to 1/8 but we haven't turned it off.
Baby Net, the early intervention program, came out to do paper work today. We have to wait for the early interventionist to call us in about 2 weeks to come out and do an evaluation to see what services, like physical therapy, he qualifies for. We have an eye appointment tomorrow. Next week is busy and we see his pediatric surgeon, lung doctor, and have the hearing screen. We will probably go see the pediatrician next week too. We should visit the NICU too since we will be at the hospital for his appointments. His primary NICU nurse visited him twice in the hospital and that made him so happy.
Nicholas seems happy to be home too. He is saying "ghee" a lot and is smiling and sucking on his hand.
Tuesday, May 5, 2009
Nicholas is doing really well today. We are waiting for his neurosurgeon to come by and check on him. I hope we are home tomorrow. They did the CT scan last night and we will know the results when his Dr. gets here. The respiratory therapist decided to try him off of oxygen for 3 hours. He has been doing great and hasn't set his pulse ox off once for de-satting. I guess that is one good thing about being here- we can try it and see what his sats are. He is eating well and back to his old self.
Monday, May 4, 2009
Nicholas is out of the PICU and back in a regular room in the children's hospital. His neurosurgeon is very pleased with his recovery. He ordered a CT scan just to make sure the shunt is working properly. I fed him some Pedialyte this afternoon and he can go back eating 3 ounces every 3 hours now. I just fed him 2 ounces and didn't give him more so he doesn't get sick. He hasn't eaten anything since last Wed. so 3 ounces might be a bit much. He voice is back but it is hoarse. He probably has a sore throat. He is getting breathing treatments every 3 hours and is back on the low flow cannula. He is on 1/2 liter of flow and satting 100 most of the time. I don't think he will have a problem getting back to 1/4 liter like he was on at home. He is peeing well and the only swelling he has is right around his incisions. I probably won't be posting pictures while we are here because I don't have our camera software on the laptop.
Sunday, May 3, 2009
Nicholas was able to be extubated this morning. They put him on the high flow Vapotherm like he was on in the NICU. They had it turned all the way up to 15 liters but weaned down to 10 within an hour. They are going to keep weaning down as long as his sats are good. He has to get to 2 liters before he can but put back on the low flow nasal cannula. He also has to be on the regular cannula before he can leave the PICU and go to a regular pediatric room. We don't know how long this will take because it is really up to him and how he does with his breathing. He is also off all sedation medications and looks so much happier. He is awake and alert and was dancing and sticking his tongue out. This is a big sigh of relief because he wasn't doing that well yesterday. They took the dressing off his head yesterday. The incision looks bigger this time than it did with the first shunt. We are going to decide if we want to even out his hair and shave the other side. He has some funky hair right now.
Friday, May 1, 2009
Nicholas isn't recovering from surgery as quickly as we want him to. They extubated him this morning but his airway spasmed and tightened up. They tried to bag him through it but he wasn't breathing on his own so they had to re-intubate. They are giving him steroids for his lungs so this doesn't happen again. He is still sedated and on pain medication. They want to keep him sedated so he doesn't move his head around and aggravate his airways which could cause swelling and make it harder to extubate. That makes sense but it isn't what we are used to. They inserted a feeding tube into his nose and will start feeding him today. He is swollen but is peeing. I'm sure he will end up getting some Lasix because we know how he likes to hold on to fluid after surgery. He will probably be in the PICU through the weekend because of the breathing setback.