33rd Day in the NICU

We headed up to the hospital where we spent almost 2 hours. The girls were so excited to get to see him. It had been a month since they last saw him (they had been kinda snotty nosed and we are not going to take any chances).

28th Day in the NICU

(Mom)

Saw Drayke today and he is doing so good. We scrubbed in and as soon as we entered his area I noticed that the nitric oxide was at zero! Started doing the happy dance right then & there. The pressure on the occilator is down and oxygen input is at 85%. His color is great and his O2 levels are staying in the high 90's. They ended up moving his IV from his foot to his head but amazingly I wasnt freaked out when I saw it. He no longer fidgets with the IV and so he actually gets some rest. Took a look at his chart and he was finally weighed and is showing at 2 lbs 6 oz! His feedings resumed on Friday and he is getting increased on the amount every 24 hours

25th Day in the NICU

(Mom)

Drayke's O2 levels ae doing great. So good in fact they have dropped him from 100% oxygen to 80%. The nitrix has been dropped from 20 PPM to 15PPM and they have lowered the pressure on the occilator. All this is good! He was such a wiggle worm today. I tell you the boy does not like sitting still. He has this big paddle on hit foot where he has an IV line and he is like a cat with tape on its foot, just wants to keep flipping it until maybe it will fall off. Silly little man.

The medication that I wasnt sure of the name is Survanta. http://survanta.com/ Sorry about the fuzziness of the picture taken yesterday. It is shot thru the canapy of Drayke's bed and a bit of zoom which always make for terrible pics but it is the first time since he was born that I actually got to see some of his mouth.

23rd Day in the NICU

(Mom)


This morning Drayke was put back onto the nitric oxide due to his oxygen levels not stabilizing. I spoke to the doctor and she advised me that after this there is only one more option left to try to get his lungs ramped up and that is steroids which comes with its own set of problems.


With as much as I was freaking out over the thought of being pregnant and having a child, the thought of not having him in my life is just not acceptable. I will never give up on him. He is still strong and active. Even the doctor said he is a fighter. He will come home some day and grow up to be the strong beautiful man I know he is.

21st Day in the NICU

Lil one got moved to an iso lab finally! No more saran wrap over the baby! YAY!

The doctors & nurses had mentioned that they were going to be moving him to a new bed for quite a while now. This is a very good thing because he is extremely sensitive to noises so this will help him relax.

The other kewl thing about the isolab is we can decorate it with his blanket that daddy made for him and pictures. This way he can always see his family.

20th Day in the NICU

We are so happy when because we finally got a picture of him with his eyes open. He is doing well and is up to 5cc's of breastmilk every 3 hours and is tolerating it well. The nurse today said "your boy definately likes to eat!" YAY!!!!! We are ecstatic. The more he eats the stronger he gets and the more he grows. The biggest concern there is are still his lungs. He receives a treatment of some kind of med that is a naturally occuring substance in term infants and adults (sounds kinda like savannah).

14th Day in the NICU

Drayke is 2 weeks old today! We grabbed a quick fast food breakfast and I stopped by Lowes to make a payment & Walmart to pick up something to help with transporting all the crap that mom carry's with her to & from the hospital. Then off the NICU we went. He is looking so good and it is now becoming obvious he is growing. They have started dropping his O2 and he is maintaining his stats well. Mom got to feed him this morning too (she put the milk into a tube that goes into his belly). He is gaining weight. Getting closer to 2 pounds every day!

13th Day in the NICU

(Mom)

We went to the hospital on Sunday afternoon and in his bed there was a card addressed to mom. I grabbed it and burst out crying. Turns out R had warned my mother that he & L got a card for me and they knew I was going to cry. The night nurses also made a card that has his foot prints and a hand print. Again, I busted out crying anew. I have to start up a scrap book or something. I am planning on getting the foot print card framed and hang it in his room while we wait for him to come home.

While we were in the elevator we ran into Dr Palmer and he told us how good Drayke's recent xray of his lungs were looking. It is always good to talk to him. He is very straight forward yet kind when he talks to us.

12th Day in the NICU Part 2

We had a really nice day, visiting with Drayke at the hospital and then off to Katie's 8th birthday celebration. The doctors felt he was doing so good off the occilator that they increased his feedings from 1cc every 12 hours to 3cc's every 3 hours. This, it appears, was just too much for our little one. His O2 levels dropped and they ended up putting him back on the occilator. They were going to completely suspend his feedings but are now to just 1 cc every 6 hours which he is tolerating well.

12th Day in the NICU

(Mom)

Drayke has been off the nitric oxide for several days now and yesterday they took him off of the occilator! YAY! No more vibrating baby! The occilator gave him around 400 "breaths" per minute. Very rapid fire to help open up his little lungs to get them to process his oxygen better. So now he is on a regular ventilator and down to 50 "breaths" per minute which is a much more natural rhythm. He no longer looks so worn out and is definately much more relaxed. 3 days ago they started him on breast milk, 1cc every 12 hours. Today we were told he has been moved up to every 6 hours!!!

He is progressing so well. Every day his numbers are looking better.

The not so good: Last week I mentioned how there ws a potential issue and Thursday it was verified that he does indeed have a 1.6 centimeter cyst in his brain. What that means is there is no brain tissue where the cyst is. This is called Periventricular Leukomalacia (PVL). This is very common for premature births. It can cause any number of issues as with any other brain injury. The good thing is that since he is so young his neural pathways way very well re-route themselves to ignore the missing mass and he may very well have no ill effects at all. The worst case is cerbral palsy/muscular problems in the extremties/inhibited mental function. At this stage we simply do not know. We are all staying very hopeful given that Drayke is such a strong force, he is stubborn and already has such good body control. The next three years are going to be an adventure to say the least. The state of Tennessee has Early Intervention which automatically puts him in line for physical & mental therapy for the next three years to make sure he is developing the way he needs to. R and I have talked about how we are both going to be working together with our son on this journey. He has already joined a few yahoo groups and we are also going to be getting involved with local parents groups who are also dealing with the same type of issues.

There are days I feel so overwhelmed that all I can do is curl up into a ball and cry for hours. First and foremost though I KNOW I love my son more than I could have imagined possible. I have to be there for him. I have to be there for myself because he needs me so desperately. All I can do now is pump my breasts so he can have the vital nutrition that is in beastmilk. And I have to put more faith in R. I am so used to not having faith in anyone but myself but I need him more than ever now. The birth of Drayke has openned something inside him that has been dormant for a very long time. He has this inner glow about him that has been missing for a long time. He is the most beautiful man in the world to me. The father of my gorgeous son.

8th Day in the NICU

Little one is doing good. They put him on nitric oxide.

Per Wikipedia:Use in Pediatric Intensive CareNitric Oxide/Oxygen blends are used in critical care to promote capillary and pulmonary dilation to treat Primary Pulmonary Hypertension in neonatal patients[11][12] post meconium aspiration and related to birth defect. These are often a last-resort gas mixture before the use of ECMO.NO therapy has the potential to significantly increase the quality of life and in some cases save the lives of infants at risk for pulmonary vascular disease. [13]

They had him on 20 and now have reduced to 5.1. It is a slow weaning process but he has been reacting so much better to this. He no longer fights the respirator and allows the machines to do the work for him so he can work on growing. We are looking at a few more days then he will be on just the occilator again and eventually back to a regualr respirator. His oxygen has also been lowered to 50 so that means he is actually using the O2 in his body. Blood gases are looking good too.Since being taken off of the phototherapy he is showing his inquisitive side and looks around as best he can to see what's going on around him. His color looks good. Just overall things are looking good. 1 week down, at least 11 weeks to go.

5th Day at the NICU

Friday morning Liz & mom went to visit him again and he had been turned onto his belly. The nurse told them that they gave him a little suppository to get his bowels moving and sure as anything there was the telltale meconium/black sludge coming out. YAY! His little bottom works good too! It is so relieving to find that all his parts are working the way they are supposed to. Myself and mom went to see Drayke before turning in for the night aroun 2AM.But I do have my happy picture of the day. I am still amazed that my son has golden hair.

4th Day at the NICU

Thursday was an incredibly hard day. Talked to the neonatologist in the morning and went over a possible complication that we may have but we wont know more until next week. Mom held it together for about 2 minutes then she completely lost it for the rest of the day. I ended up going back down to Lewisburg later in the day so I could de-stress in my own way and Liz called off of work to stay with me for the night.Turns out there were 8 births on the high risk floor that day alone and they ended up closing the NICU for several hours while they were getting all the new arrivals in. Liz and Mom finally were able to get in around 9:45PM and she was so glad they did. They approached Drayke's bed and his nurse said "you're in time! You can help me change his diaper and take his temperature!" Mom was bouncing off the walls because so was so ecstatic. OMG! She finally gets to really touch her son! She got to pull his little arm up and tuck the thermometer into his armpit. She told him "sweety, we need to get you fattend up because I have had chicken wings that have more meat on them". She just kept looking across his bed at Liz with happy tears flowing. Then trying to figure out how to lift him to change his diaper was a challenge. Being so small she was not sure as to how to handle him. The nurse told her to just take his legs and pull him up just like a full term baby and tuck the clean diaper under his dirty one. Then they started to pull off his dirty diaper and all of the sudden he peed a good foot across his bed towards Liz. They laughed hysterically at this, not expecting him to have THAT kind of reach with his stream. She got to clean his boy bits and finished putting the diaper on him. She has never been so happy to change a diaper in her life! As they walked out she was all "YES! Gods I needed that! My boy is doing so good" She slept VERY well Thursday night.