122nd Day in the NICU

Early this morning they weighed little man and he was 6lb 9 oz. But when we called on him tonight he was 7lb 2 oz. They were able to get him down to 89% O2 but she had to put him up to 100% because she just messed with him.

We got to visit with him. Mom wanted to hold him but she decided he has had 3 days of holding and that maybe why he keeps going back up on his O2. Also his CO2 was 81 this morning. We are still trying to get his length but they keep forgetting to get it for us. We got to the NICU and he was asleep until the Respitory Therapist got there because she did his Aresol treatment and his CPT. He just loved that and was awake during the entire thing. He was Stating 99 and 100. He was getting fed and then Tasha came in and did his massage therapy. Little tyke slept through it all and just enjoyed it.

Oh yeah with his GI Tube in his nose and the Vent tube being smaller he is practicing his baby bubble blowing skills for the next olympics. He was also able to put his tongue in one of the bubbles without popping it. He is so cute because the moment you wipe his mouth he will look at you like you just messed him up.

So onto the other news. We still have not heard back from St Louis but they did say it is a lengthy process. We may hear from them tomorrow or maybe Monday. We spoke to Dr Hassell today in regards to Drayke's care. She is going to try him on a different formula so that they can increase his calorie intake. If she does not hear from St Louis by Monday they will call them. Also if they still do not have an answer we will start with getting Drayke a trach so that he can be more comfortable. It is past the time where he really needs to start his oral skills. Also this weekend they will increase his Viagra dosage to see if it will help them decrease the need for O2. So far the little bump on Monday has let them wean him a little. Now there is a downside to the Viagra and that is making sure his Blood Pressure stays good. Dr Hassell also said they will probably doing a echo next week to see if it is helping. So we have a knowledge of what to expect next week. Its just a waiting game.

121st Day in the NICU

Today they were able to wean his O2 down to 86% before I got to hold him today. Of course during and after he was at 100% O2 but that is to be expected. He now has his GI (Feeding) tube put through his nose and into his throat. Here is Drayke contemplating on taking over the world.

Someone sent us a blessing that I would like to share:

Come, you blessed guardians of the young and the infirm, come andcherish this infant in your loving arms. Shield him from all shadows,great spirits and deities, with the pure luminosity of your sustaininglight. Guard and protect the fragile life of young master Drayke as hebattles bravely and with strong determination worthy of any dragon soulto maintain and secure his grasp on life. We ask this in the name ofthe one from which we all are come. As it is our will, so be it yours. By the name and power of the One, so may it be.

I read this is cried because this is from someone I have never met or even spoken to. We are going to print this out, frame it and put it near his beside next to all the prayer cards and get well cards that he has gotten.

120th Day in the NICU

So today marks 120 days. He now weighs 7 lbs. He does not look bloated or swollen so this means it is true 7 lbs. He has been good today and only needed 3 doses of Versed to calm him down which is great. Grandma got to hold him for about an hour. This is the first time she got to hold him. He did great. We are still waiting on word from St Louis.

119th Day in the NICU

Drayke weighs 6 lb and 13 ozs today. He looks great. We ended up talking to Dr Karmo and we told him we wanted the Aresol treatments and the CPT treatments to resume. We also explained to him that his viagra dosage should have been increased when Dr Ham was on duty but he never did. We expressed that we felt that Dr Ham did not want to do anything to improve Draykes condition. He nodded but did not comment. We also spoke to him in regards to the morphine. I so love Karmo because he explained that Drayke had fentanol (sp?) which is 100 times more powerful than morphine and when we looked in the NICU drug book we got more description on it. We decided that if he really needed it then we will okay it.

The reason why we got so upset was that Dr Ham did not talk to us and if he would have called and explained to us why he was giving morphine like Dr Karmo did things would have been different. Dr Karmo spoke to Dr Hassel who was on the floor on the high side (side that Drayke is in) and she re-ordered the CPT and Aresol treatment and she also upped his viagra.

We found out that the March of Dimes will not assist us because they give money to research and not to parents. We ended up talking to COTA (http://www.cota.org/site/c.dqLQI3OEKpF/b.496377/) They will donate $2500 for every $25,000 we raise. The problem is raising money. We have to have 4 non family volunteer to head up this to be able to be a part of COTA. This will help fund any medical, food, hotel, travel, and loss of wages accrued while dealing with the transplant. So we have some work to do.

While we were towards the end of our visit we had to rush out the door due to L getting into a car accident but while we were rushing out we got a call from St Louis Childrens. They said they needed more information in regards to Drayke. So we had Dr Hassell give her a call. This will take 2 or more days before they get back to us to tell us if they have considered us to be considered for the transplant. Once we are considered they have to assess Drayke personally to see if he can qualify. Ugh more waiting.

118th Day in the NICU

Today we Decided not to go to the hospital because he needs one da of rest. We probably should have gone because of the events that transpired. Around 4 am he pulled out his Vent tube and they had to put a smaller one back in because his throat was a bit swollen. His heart rate did not drop so that is a good thing. His CO2 was 94.

I called on him around 9 ish and things were okay from what the nurse told me but when Mom called on him later in the day that is when things got bad. Apparently Dr Ham decided to prescribe him Morphine. Yes you read that right I did say Morphine. Im sorry but morphine is used for the extremely hurting and dieing patients. Dr Ham is one of the ones that gave Drayke no chance of survival on Thursday and also stopped his Respitory CPT Treatment and the inhaled med treatment. When mom found this out she ended up calling me. I called the nurse back and told her under no circumstances should my son be given morphine. Good thing we caught them when they did because they did not give it to him yet.

The Nurse kept telling me that he broke through the versad (sedative) and needed something stronger. Im sorry but there are other things out there besides morphine. I told her that I did not want Dr Ham to touch my son but unfortunately he is the only Dr there so I told her I wanted him to call me if he makes any changes but he would not agree to that. I am so glad that tomorrow Dr Karmo and Dr Hassel has him. I am beyond anxious to hear from St Louis Childrens tomorrow.

We called throughout the evening and he was getting aggravated about having the tube in him but that is to be expected. The night nurse told us that he now weighs 6lbs 13oz. He is up to 43 on his feedings.

117th Day in the NICU

Drayke today weighs 6 lb 11 oz and they had to up his BPM's to 50 from 45 because his CO2 was getting to high. Also the IV ended up coming out so they decided not to put another one in. As of 6 pm he has been on the Viagra therapy for 48 hours so we will see if it helps. They are also only giving him sedation when he absolutely needs it. Also his little butt has gotten better.

We got to the hospital and I was allowed to hold him. When the nurse got done settling him in my arms he decided he had to have a bowel movement that shook his body and my arm for a good 30 seconds. We waited to change him. Last week the moment he had a movement he was fussing and it hurt his butt. This time he was fine while we waited to make sure he was done. I ended up holding him for 1 1/2 hrs. I have not held him in over a month and boy did I need this. He slept pretty much the entire time. Towards the end his belly was grumbling so he was waking up for his feeding. When he woke up he was actually awake for a while and was looking all around. Lately he has been so sedated that he would open his eyes and roll them and fall back to sleep.

I have been doing so much research over and over again in regards to his transplant. I am positive our little one will survive. Here is a link to St Louis Children's Hospital
http://www.stlouischildrens.org/tabid/279/itemid/200/Lung-Transplant-Program.aspx

116th Day in the NICU

Today has been pretty good. Drayke now weighs 6 lb 10 oz. He is still on constant sedation but that is a good thing because he wants to pull out his O2 tube which would not be good right now. I have been on and off the phones with insurance and with St Louis Childrens hospital. I was able to speak to Ann at the St Louis hospital in regards to the transplant. She asked if she could get some records so I handed the phone over to the nurse manager that was walking by and she spoke to her. Turns out the Nurse Manager did not fax her everything so she called back and needed to talk to the nurse manager again. Dr P called Ann and left a VM for her to call him back because they needed to talk to get information sorted out. Ann called back and spoke to Dr P. She was able to get all the info needed and on Monday when the committee meets they will decide if Drayke would benefit from the transplant. She asked for head ultrasounds and the thing is they are great so I have a positive feeling that he will be approved. I am not sure where to go after this but we will have to wait till monday.

Drayke decided to pull out his IV today so Dr P had to put another back in but the good thing is that they took out the 2 out of his head so he does not look like devil baby. They had to put one back in his head though. His little butt is healing just nice since we had the nurses put vitamin E on his sore butt. Also we were told today that Centennial has never had a transplant baby before so he will be the first and this is why most of the Dr's do not really know about lung transplants there. Also Drayke is the first baby at this hospital to receive the viagra treatment as well. Dr I has done it before but apparently at a different hospital. Our little boy is living up to his name.

115th Day in the NICU

Today is probably the worst day of them all. This morning we were told the Echo showed that his heart has hypertension. 2 of the Dr's told us flat out there is no chance of survival and that they have done anything and everything they can. Dr P pretty much told us we had 3 options.

• Disconnect everything and let nature take its course.
• Give him a trach and let him go home and he may last a month (maybe).
• Keep him sedated and let him keep at it with no further action.

Dr P wanted us to sign a DNR but I will not sign one. He wanted us to sign one before we left the hospital which we did not do. We went in and saw him and cried and his mom got to hold him and he was doing good (mind you good is a relative term). I called up my other half and she got online and did some research. One thing that stuck out was a hospital in St Louis, Missouri that has been doing infant lung transplants since 1994. We have been told time and time again that infants do not get lung transplants. I had mom call them up and one of the criteria is that he was born after 28 week. We are in luck because he was born at 28 weeks 3 days. The bad thing is that before anything else we needed to get insurance situated so mom called Tenncare and they said that normally they do not allow out of state care but if it is an emergency that they have a transplant coordinator that we need to get a hold of. We left a message and hopefully she will get back to us tomorrow. We also got a hold of March of Dimes and will have to call back tomorrow as well.

Since things were going so bad we had mom's mother come up to see her grandchild. (Today is her b-day as well). We had to leave the hospital but mom saw Dr I. He is the head of all the neonatalogists there and he wanted to talk to us anyways so we had a meeting with him. Mom explained to him that we need a refferal in regards to a lung transplant and that is when he hit us with some news. He wants to do the viagra treatment. Apparently he was the first Dr in Nashville to do it so he is familiar with it and he thinks it will help his heart and lungs but his lungs will still be sick. He is also aware of infant lung transplants and his is willing to do research with us to help Drayke get the best possible assistance. This was a major relief since the other Drs under him was not willing to do the treatment and did not know anything about the infant lung transplant. Dr I wanted to start the viagra treatment ASAP if he can get the pharmacy to give him the drugs.

We went to the airport and picked up grandma and went to grab a bite. After dinner grandma finally got to see her grandson. We also found out that he got his first dose of viagra at 6 pm and will get it every 6 hours. His stats were doing okay. He was down to 45 breaths per min on the vent, 100% O2 still, and still 32/5 on his pressure but his Spontanous breathing was anywhere from 30-40 bpms and he was stating high 80's and low 90's which is good for him. Of course he was coughing alot and the Repsitory therapist said it could be the viagra breaking stuff up in his lungs. I am hoping that this works because if they can get the hypertension in his heart down then they can do a lung transplant. There is still research to be done but there is hope. We refuse to give up on him.

112th Day in the NICU

Drayke weighs now 6 lb 2 oz and he is 18 1/4 inches long. Earlier this morning his pressure was down to 32/5 and Co2 was in the 60's. His oxygen went back up to 100% because his poor little behind has been hurting him and causing him to get aggravated. On Saturday they started to give him feedings again. They started with 3 cc's and now are up to 6 cc's of formula that has been broken down so it is easier for him to digest.

Around 11:30 am his heart rate dropped and they had to do chest compressions. They do not know why his Heart Rate dropped. They had to extubate and reintubate him. After the chest compressions he started to stat really good. O2 is at 89% with his O2 reading in the high 90's to 100.

109th Day in the NICU

Today Drayke weight 6lb 1 oz. He has lost almost 12 ozs since last week. He is currently at 78% oxygen and 34/5 on his pressures. His platelet level continues to drop and the Dr is unsure why. I have done some research and found out that Gentamycin and Heparin could cause platelet levels to drop. There are other reasons but Drayke is currently taking both of these. He has had Heparin since the beginning and of course he has had the platelet problem since the beginning. So maybe this is the problem. I have mentioned it to the nurse and of course she got nasty about it but she will mention it to the Doctors. We may try the soy formula to see if this will stop his belly from becoming so distended.

107th Day in the NICU

So little boy is definately doing a bit better today. Right now he is at 55 BPM and 82% Oxygen. His pressures are still high and they have continued the stop feeding today. Little man is strong. He likes to try to turn his head the opposite way that the vent is and it crimps the line. His platelet level is a little low so I expect them to once again give him a blood transfusion. He is now resting a lot. For some reason they measured him on Sunday and he is shorter that he was the previous Sunday. We think that the nurse did not measure him correctly this past week. He will get measured again and we will see.

Early this morning the nurse was concerned because his belly was a bit extended so they did a X-ray and it just turns out to be air so they suctioned the air out using the GI tube. They are having to do this every couple of hours. Dr Ishmael told Mom today that his lungs look better. Anyday where they can lower his numbers and he is feeling good is a good day for me.

106th Day in the NICU

I called @ 6 am on little one this morning and was told that Drayke is doing much better. He was stating in the high to mid 90's.

Around 9 am I got to speak to the day nurse and she was telling me that Drayke has really improved and that his blood was no longer acidic and he was stating in the mid to high 90's still. The nurse did mention that the sedative they give him every two hours has helped keep him calm and relaxed so he can get some rest. His boy bits and behind is still red and still kinda raw and she was going to try to work on getting that better. Oh Yeah his CO2 was 47.6 this morning which is great to hear. I am going up to see him this evening.

105th Day in the NICU

Today Drayke has had his ups and downs. Poor little boy has had a diaper rash for a few days and today his boy bits were so raw that he was bleeding a bit. I would post a picture but I am pretty sure that I may get in trouble for it.

He was contstantly destating. He has has so many IV's stuck in him that I swear he may think he is a pincushion instead of a baby. He extubated himself this morning. When I called on him at 6:00 pm he was stating good but he had a few bad times during the day.

Around 10:00 pm when Mom called she found out that his pH level was low which means his blood was acidic. They started him on a bicarbonate (sp?) to lower the acidicy in his blood. He was also stating at 40's-60's which is not good. They also put a stop on his feedings and started to give him fluids through the IV. Poor Little man. I so want him home to just hug him.

104th Day in the NICU

So while Drayke has been in the hospital we have been getting his room ready. I painted the old office a nice green color (Only took 2 coats of tinted primer and 2 coats of paint). We found a garage sale in Brentwood where we found a dresser that had been used in a nursery. It was painted by the family for their son. We got it for $10! It is so perfect for his room. We are all so ready for him to come home to his room.

102nd Day in the NICU

Today is Drayke's 4th full day of the steroids. He is jittery, which is normal while on these meds. We have been able to wean him a little on his vent (80-85% O2). Dr K is shooting for within the next 48 hours to start seeing some big improvements and getting him back on the CPAP as soon as possible.He has been such a poop machine his little behind is raw. That can not be comfortable. The Happy Heiny wont even stick to the area so the nurses are letting him air out to help with healing. My poor lil baby bug.5 more days on steroids. Pray that he doesnt get sick again.

100th Day in the NICU

I cannot believe it has been 100 days. He is absolutely gorgeous and has such a personality. Here is a smiley baby pic.

98th Day in the NICU

(Mom)

He is doing better as far as gunk in the lungs go but he has been on pretty much constant 100% oxygen since I last posted. Pressure is still very high as well as his respiratory rate. Today we started a second round of steroids. We are hoping this gets him back on track. If it does not then we are getting an updated echo done to make sure his left ventricle is pumping enough blood to his lungs. If that is ok but his numbers are still low he will be getting transferred to Vanderbilt to get a trach tube inserted. This, amazingly, is not freaking me out. We had a very lengthy discussion with Dr Palmer about Drayke's long term care. Given that he is now a more than full term baby he has to start using his mouth and throat the way it is intended and the trach will help accomplish this. Also, we can bring him home on a ventilator installed this way. His xray was pretty ugly from 8/2 showing lots of scar tissue in his lungs. It may just end up waiting for him to outgrow the damage. Needless to say, we are REALLY hoping the steroids work again.

On top of our own problems I spoke to one of the former NICU moms today. Her son is doing well but the mom who is my age and had invitro and ended up with triplets lost one of her boys a couple of weeks ago. His bed was next to Drayke's and when we noticed his area was cleared we thought he went home with his other 2 brothers. This hit really close to home. The parents in the NICU start to become family, expecially us who are in here for the long term. When I heard that Jared had died I sat in the cafe and burst out crying. The news really has effected dad as well.

On a happier note I brought in some items from little ones at home crib. Drayke LOVES his Rainforest Waterfall Peek-a-Boo Soother. He gets quite grumpy when it is not on. I also took in the 3 stuffed animals I had bought him in January: a frog, hippo & gator. We last night his nurse decided he needs more stuff to look at and jury rigged a mobile out of medical Q Tips and silk tape. The result is great and Drayke was looking at it this afternoon and smiling.

And of course I had to have a new pic of the love of my life. I cant believe tonight he weighs 6 pounds 10 ounces!