216th Day in the NICU

Dr R is really pushing Drayke this weekend. He decided to go ahead & start dropping the nitric. Over the last 24 hours it has gone from 20 to 14. As a general rule doctors like to knock it down a point every day or so. Draykes oxygen is down to 76 and morphine is now at .06! He is saturating in the 90s pretty consistantly today so most likely they will drop his O2 down another 2% to 74% later tonight.

Drayke's feeds have been raised to 13cc's/hour and his lipids are being stopped. That means if he PICC line goes it is not a problem, we just use the broviac for all his meds. He is also getting weighed tonight so we are going to see how much he has dropped since taking the Miralax. Oh, that is also getting cut back to every other day now since his belly is nice & soft & everything is moving the way it needs to.

Dad & I saw the baby's cardiologist yesterday and we discussed what has been weaned so far and he is pleased. He s not overly concerned about the echo scheduled for tomorrow. The numbers Drayke is showing are speaking volumes in that he is tolerating the weaning very well.

214th Day in the NICU

Today Drayke is 7 months old.

It has been a good week and a half since starting his weaning on the vent. Today Dr R knocked him down to 80% & his morphine is at .1, half of what he was on at the time of the big meeting. Dr R is wanting him weaned to 70% by Sunday so we can start weaning the nitric.

His nurse today was being very negative on the phone this morning. So much so that when I hung up I had a bit of a meltdown. I called dad and he figures the nurse was just having a bad day. Dont try to tell me weaning 20% off his O2 and 50% off his morphine in 9 days is not an improvement! Grr.

We get a new attending Monday and a care conference is being called for after Drayke gets his new echo done on Monday. We need to bring the new doc up to speed and make sure we dont backslide.

210th Day in the NICU

Drayke has been weaned down to 90% on his oxygen and still saturating in the high 90s-100. They have only weaned him .01 on his morphine and everything else is the same.

He was weighed Sunday morning. Since he had not pooped in more than a week I know this will be dropping. He weighed 11 pounds 10 ounces. The doctor prescribed Miralax to be mixed his formula last Tuesday. Nothing happend until Sunday. I put out a message to all the moms I have in my pnone book. One of them called me and she has been told by a gastrointerologist to never mix Miralax with milk, it will only clog things up worse. We had the weekend attending paged and told him this info. He then ordered that the Miralax be mixed with Pedialyte. Within 3 hours he had overflowed his diaper. Dad & I were ecstatic over this huge mess.

Dad got to hold him for about an hour. Little man did so good. He loves being held. Then Drayke decided to spit up his methodone. He has done this a few times now & may may need to switch him to IV.

This mornings xray his lungs looked a bit wet so he go some Lasix to help dry things out. He ended up having a diaper that weighed 238 grams, urine only!!!

A friend from Centennial posted this on her MySpace. She was right about needing to pull out the tissues:


What Makes A Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a Mother
And I know I heard him say.

A Mother has a baby
This we know is true.
But God can you be a Mother
When your baby's not with you?

Yes, you can He replied
With confidence in His voice
I give many women babies
When they leave is not their choice.

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there's no need to stay

I just don't understand this, God
I want my baby here
He took a breath and cleared His throat
And then I saw a tear.

I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say

"We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.
I feel so lucky to have a Mom
Who had so much love for me
I learned my lesson very quickly
My mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow's where I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don't be sad today
I'm your baby and I'm here."

So you see my dear sweet one
Your children are ok
Your babies are here in My home
And this is where they'll stay.

They'll wait for you with Me
Until your lesson is through.
And on the day that you come home
They'll be at the gates for you.

So now you see what makes a Mother
It's the feeling in your heart.
It's the love you had so much of
Right from the very start.

Though some on earth may not realize you are a Mother,
Until their time is done.
They'll be up here with Me one day
And you know you're the best one!

205th Day in the NICU

The meeting yesterday went better than I had anticipated. It lasted and hour and a half. Dr M from Cardiology, Dr C & Dr R, 2 nurses and someone else whom I have no clue as to who she was were in attendence.

The main points of discussion is where to go from here, our goals for the next month and if Drayke codes what are the limits we are setting as far as bringing him back.

Dr R's main concern is if the pulmoary hypertension is "fixed" which means there is no reversing what has happened. Dr M & Dr C both feel that we are still in a position where Drayke can still beat this. Dr P last Friday also expressed this as well. We have to get him growing. I told them flat out "we have to get his bowels moving so we can get back up to full feeds. Period." I also stressed that since 11/1 there have been no changes to any of his settings on the vent & nitric. How can we see what he tolerates if we leave everything as is? The same goes for the sedation he is on.

The conclusion was we were going to very slowly start weaning his O2 & morphine. His feeds have also been upped to 4ml/hour with muscelax (sp?) to help get his upper GI moving. Today & yesterday he has been doing great, just like when Dr P & Dr C had him. We are back on the right track again. We mentioned how people have brought up ethics questions about how they feel we are doing so much to our little man. We were told that what is being done is definately not over the top as far as his care. There are more drastic things that could be done. We did not even ask as to what those were because we feel that Drayke will make it thru with what is being done at this time.

The other part of the meeting was what happens if Drayke codes? We all agreed on what dad & I felt were acceptable conditions. No epiniphrin, no shocking him, CPR until we get there. We told them how we were afraid to sign a DNR because he may just have a clogged ET tube if something happens and didnt want him die because of something easily taken care of. The doctors were all in agreement that everything would be done except those items listed above. So it is noted in his chart.

On a very down note: one of the moms we have made friends with at the RMH has had to make a hard decision. She gave birth to twins a couple of months ago. The boy has multiple PVL's (holes in his brain) and has been having seizures. Yesterday morning he had a series of them and is now considered to be brain dead. When I found out about this last night I went to my room & burst out crying. I prayed for the gentle release of his soul at the same time as being thankful for the continued life of my son.

Being in the NICU as long as we have, I have seen so many babies die. Parents being fearful of leaving their childs bedside. The phone ringing and seeing the 615 area code and all you can think is please god let the baby be ok. It does not get easier. Feeling extreme sadness for both parent and child and greatful to have dodged the dark spector again. Death is always so close. As I have said before, I would not wish this experience on to my worst enemy. I am praying for the day when I can again cry tears of joy.

203rd Day in the NICU

The big meeting/conference is set for tomorrow at 11:30AM. I am nervous. Lots of doctors, nurses, respiratory therapists, social worker, dad & myself all discussing Drayke's prognosis & future care.

Discussed during rounds this morning about the absolute need for Drayke to get a trach. I feel down to the core of my being that he will surprise everyone and do far better with it rather than the ET tube in his mouth. The times he de-sats the worst? When his tube is getting re-taped. Other than that he does great. The RT made the argument to the doctor "you need to stop looking at numbers and think of the baby. He is 7 months old and cant develop the way he needs to with him intubated". All of his labs from this morning came back great. He is healthy except for the lungs.

Today we are starting him back on scheduled Methadone to begin the weaning process off of the morphine. We aregoing to do this very slowly. The morphine is clogging up the plumbing and he hasnt pooped in almost a week.

The nurse last night weighed him and Drayke is now a whopping 10 pounds 11 ounces! This is not water weight either. Now once he does start having bowel movements again I am sure that will drop a bit but dad are enjoying the fact he has gotten so big.

One small concern I have are his eyes. One seems to be a little off kilter, most likely due to him almost always being on a side and the muscles not quite developing correctly. They move together, but look a bit off. At least I am sure he can see and hear.

We finally have been able to use the new sheet I made Drayke. Dad found some dragon flannel at Joann Fabrics. It is so cute and I made sure that I left it long enough to turn into a fitted sheet once he gets home.

200th Day in the NICU

Happy 200th day of living outside the womb! Today has been great.

Drayke did incredibly well during the broviac placement. He really surprised the Fellow, Maria. She is the one who told us last Saturday that he had no chance of survival, etc.

Afterwards the surgeon came into the quiet room to let us know that they tried to go thru his neck/chest but his anotomy wouldnt allow for it so it was placed in his right thigh. The surgeon also told us how well everything went and that he has an availability on his schedule to get Drayke's trach & GI tube put in. WOW! We know he did good but not THAT good! YAY for my strong baby bug!

About 30 minutes after that our fave, Dr P, showed up and played with his vent. We told him what the fellow & nurse had said last week and all he said was "and Fellow's have a LOT more to learn". He is still confident that we keep going as we have been Drayke will make it. ALL of his problems stem from the Brochial Pulmonary Displasia, BPD. Once we get that back under control, and it looks like we are on the right track, that the heart WILL take care of itself. He is totally against any kind of surgical repair to his heart. Dr P thinks he simply had a setback from having back to back staph infections. It was the first breathe of fresh air we have had all week. With Dr P this confident, our hopes are high. Gods I love that doctor.

Dr R came in after that (baby's current attending) and spooked us a tad by telling us he had ordered a blood test. He had finally done an actual physical exam of Drayke & noticed that 4 toes are partially fused (2 on each foot). The technical term is syndactyly. R & I then told him we both have webbed toes and showed the Fellow. The both laughed and said yep, it's genetic. I asked him to still go ahead with the test so we know what it says.

The two pics are from today after the surgery.

199th Day in the NICU

Drayke has been fairly stable this week. Tomorrow he is getting a Broviac line put in because he can blow thru an IV in no time. A couple of days ago a nurse practitioner attempted to get a second PICC in but she couldnt get it the thread to where it needed to go.

The reason we have agreed to the Broviac is the lipids they are wanting to give him are not compatable with the Ativan going thru the same line. Also, we can do blood draws on him without having to stick him (the PICC on babies is much too fine a catheter, it could clot off easily).

The conference with all of his doctors, some nurses and ourselves has been rescheduled to early next week. It doesnt do any good to have a meeting of the minds without his cardiologist.

Dad & I have been doing a lot of research into a potential surgical procedure to help with the pulmonary hypertension. Install a shunt to equalize pressures in the heart. Our friend from Centennial was sent here due to a hole in his heart. It was decided that it was this hole that was preventing him from getting PH so it was decided to leave it as is. This proceedure used in combination with a surgery for the septal hypertrophy could potentially take care of his issues. It is a long shot and we are going for broke on this.

194th Day in the NICU

I held Drayke today for a good two hours. I also got to see him saturate at 100% for the first time in more than a week *YAY!*

Baby boy hit 10 pounds 7 ounces!

We are needing to talk to his cardiologist as soon as possible in regards to his cardiac hypertrophy (thickening of the heart muscles). I am needing to hear from one of the top specialists in the field to make sure what can be done to help this. One of the Neonatology Fellows came in and told us nothing can be done now that the biggest issue is Drayke's heart. I am printing out some research and will bring to the hospital on Tuesday (Dr M is out until then). I need to know if Dr M has given up or does he have a plan in mind.

If Dr M says we are done then dad & I have a huge decission to make in this next week. Our fave nurse is already planning on being with us if we decide to do the unthinkable. The thought is killing me by inches. I have not been able to stop crying since 3 this afternoon.

193rd Day in the NICU - Part 2

Leave it to my son to break thru his meds and decide to wake up on his own! He is on a IV drip of Vecuronium. He is not supposed to be able to wake up!

That speaks volumes to me. He is so strong. He will beat this.

*mama dances around his room*

193rd Day in the NICU

This morning I walked into Drayke's room and saw his saturation at 77. My heart sank. What went wrong? Why is his PEEP back up to 12?

It turns out he has a simple pneumothorax, slight collapse of the upper right lung. When I went over the xray with the RT manager we also noticed his ET tube was not below the clavical. So an RT came in an his tube is now at 11cm and his sats have popped right back up to the 90s. The xray from 3pm shows he is now a tad over expanded so the PEEP has been dropped back down to 11, possibly lower it more later tonight or tomorrow.

The echo from yesterday shows an improvement in his pressures showing that we are on the right track.

The doctors are going to start the weaning process off the Vec. This will be an all day thing because, as with any drug, we want to make sure there is no rapid withdrawl.

192nd Day in the NICU - part 2

Pictures! These were taken between 10/27-11/5.

192nd Day in the NICU

We are into day two of having Drayke in a paralytic state. His numbers are very stable. The spells have stopped. Heart rate is anywhere from 135 to 160. O2 saturations are between 88-95. His blood pressure has always been good. Now we need to figure out why he desats while awake. Stress. Agitation. We simply are not sure. I am not as afraid as I was 2 days ago when I couldn't stop crying.

The pressure on his vent was dropped to a PEEP of 11, pressure support is at 12. In english, he is needing less support. We do need to try to get his oxygen back down but the doctors are taking things very slowly at this point.

I have the list of meds he is currently on, both IV and oral:

IV Meds
Vecuronium - paralytic (endng on Saturday)
Milrinone - heart function (increasing dosage today)
Morphine - sedation
Lorazepam/Ativan - sedation
Vancomycin - antibiotic (today is his final day on it. Last 2 blood cultures show negative for staph)
Total Parenteral Nutrition (TPN) - until we start his feeds

Oral Meds
Viagra/sildenafil citrate - a blood vessel widening vasodilator
Spironolactone - diuretic
Hydrochlorothorazide - diuretic
Aminophylline - bronchodilator
Theophylline - bronchodilator

My sweet little man is SO going to hate doctors as he gets older.

190th Day in the NICU part 3

Little man is not doing very well. The last four days he has not been holding his oxygen saturation well at all. He has been dropping all the way to the teens sometimes and taking a while to come back up.

The echo done today is showing his heart is worse. It appears he is going into cardiac failure. We finally get his lungs doing good and his heart is starting to give out.

The doctors are putting him in a paralytic state/induced como to get his body to relax and let some of the meds do their work. He is back on the Milrinone, LOTS of morphine and Ativan. His feeds were suspended again for the next couple of days.

Everyone is at a loss as to what has suddenly gone so wrong. Dr P is very unhappy at this turn of events. Dr M from Cardiolgy & Dr C are all just stumped.

190th Day in the NICU Part 2

Drayke's Heartrate went down around 1:15 and he had to be bagged for close to 5 min. Cardiology came by and ordered a echo and there is also a order for a chest x-ray. It is still a waiting game.

190th Day in the NICU

I called on him this morning. He had a rough night. Dropping his saturation down to the teens on occasion. I took the day off because we are supposed to be meeting with doctors all day today. Mom decided not to go to WIC or vote because of little man's condition.

We got to the hospital. They upped his nitic by 5 to a total of 10. His vent is still at 100% and he constantly desats. We ran into Dr Carter in the hall when we went down to grab a quick bite to eat. He does not think it is the lungs that are causing this. He thinks it is the heart. The echo they took on friday does not look better nor worse than the last time so he is stumped as well and they are going to get the team together to talk. He is going to ask Dr Prince what he thinks. We came back upstairs to find out they already rounded on him. Nothing much was changed. They are waiting for cardiology to come up here and decide whether the milronone would help him more than the digoxin. They orginially said they did not think it made a difference but they will come down and check him out.

The pain management team came in and looked him over and even agreed that this is more of a discomfort pain than a hurting pain so they have decided to make some changes. Please excuse the spelling:

Morphine drip was uppded to .08 from .02
Morphine as a PRN .7
Adavan drip .8 is being added.
Adacan as a PRN .7
Phenobarb as a PRN 2 1/2 mg
Methadone was pulled.

He is still getting the other drugs as well but nothing on them has changed. They also decided to stop feedings right now because the food is coming back up his OG tube and that it can cause more problems with forcing him to eat than from putting him TPN and lipids. He got a dose of Lasixs because he is looking like he is retaining water. He urine output has not been good but we were able to get a 94 gram urine diaper out of him right after the dose.

Repitory has to keep changing his vent over to PCV (Pressure control). It is where the machine is forcing him to do certiain pressures. It is harder on him than the other settings but he needs to keep his oxygen levels up.

We were told that he maybe on the verge of a point of no return with his heart (told by the nurse). His lungs are doing good but his heart is failing. It is common with kids in his condition. They are looking into what meds would help him. We are still waiting for the team to get together and talk to us about a Plan of Action for him.

189th Day in the NICU

So Today was like yesterday. Drayke is not doing so well. They put the PICC line back in him. His saturation levels are still low. Down in the 60's consistantly. He is having several spells. These spells are happening while he is awake and while he is asleep, whether he is being messed with or not. The have decided not to do the bronch scope or the trach this week because of his spells.

188th Day in the NICU

We walked in today to see Drayke's O2 levels in the 50's and 60's and just staying there. They tried to give him a transfusion earlier but they had to warm up the blood and then they tried to flush the IV line was not flushing so they had to send the blood back because by the time they were flushing the blood was expired. The nurse had to give him several manual breaths trough the Vent and he eventually started to do better. They started the blood infusion at 10:30 am. The Dr's rounded right after that. We looked at his X-ray and it does not look that bad. They are waiting for the culture to come back on the PICC line so that they can re-order a PICC so that they can start him back on the morphine drip. They are giving him PRN's of morphine. More than likely tomorrow when the PICC line lady is in they will give him the drip back and slowly wean him this time. Right now his 02 sats are in the high 80's to the mid to high 90's. Just hit a 100 a few moments ago.

It is scarey to know so much about his care and everything. I am not saying I know eveything but I am starting to think about going back to the medical field instead of continuing the Business Information field. Mom is seriously considering going for the nursing field. Will be posting more on his condition later today as things progress.

187th Day in the NICU

Today has been very upsetting. His saturation has been in the 80's and he keeps desating. Mom got to hold tonight and he was stating great but then they put him in his bouncy seat he was just unhappy. Late in the night his blood draw came back. His platelets (was around 300) are high but his hemacrit was low. He needs more blood and that should help with his oxygen levels. His PICC line culture came back negative so it was not the PICC line that caused the reoccurrance of the Staph infection. Another thing is he does not seem to be responding to the methadone as much as the morphine so we will talk to the Dr's Tomorrow and see what happens.