Ryan's July & August Blog

July 25, 2007 - Ryan's first day with us.  Ryan arrived today 15 3/7 weeks early.  Mom felt fine all day and ate lunch around 1 p.m.  After that she had some cramping and thought it was just the food not settling right.  It settled down a little bit after going to the bathroom and she had to run out to a golf course about 30 minutes away for a meeting.  Before she left she called her doctor's office and said she was cramping and she doesn't know if it is contractions or cramps, what should she do.  They said a nurse would call her back.  So she ran to the meeting and on the drive she timed the frequency of the cramping and they were 5 minutes apart.  By the time she got to the golf course she knew she was having contractions.  Luckily by the time she got to the meeting there was only about 5 minutes left and after about 5 more minutes she told her co-worker that she thought she was having contractions and that she needed to go.  So on the drive back to Boise she called her doctor's office again as no nurse had called her back and it had been an hour.  They immediately got her to a nurse and she said get to labor & delivery for monitoring.  Figuring it was like Braxton Hicks where they would watch her and send her home, she ran home and got Dad and they headed to the hospital.  They put her in a monitoring room and the contractions stopped so the nurse said if Mom didn't have any in the next 10 minutes they would send us home.  Mom went to the bathroom and they started up again.  And then they were showing on the monitor so the nurse went to check if Mom was dilated and she turned white, had tears in her eyes and said Mom's water was right there ready to burst.  They called the doctor, gave Mom some drugs to try to stop the contractions and wheeled her to a delivery room.  Mom & Dad were spinning with what was going on.  Mom knew that it would not be good to deliver this early.  So when we got to the delivery room they basically put Mom on her head to try to get the water to go back in or not burst.  They brought ultrasound in and to make matters worse Ryan was breach.  The doctor said that they would have to probably deliver Ryan in the next 24 to 48 hours and so they were going to load Mom up on steroids to help develop his lungs and other drugs to keep Mom from delivering quite yet to give Ryan as much time as possible to develop.  The contractions stopped and Mom's back started killing her so she asked if she could roll onto her side.  They said ok so Mom rolled over as they gave her a steroid shot.  Within minutes Mom started having contractions about a minute apart.  Mom alerted the nurses and they checked the ultrasound again and Ryan was starting down the birth canal.  Mom had to deliver ASAP.  The neonatalogist came up from the NICU and said that Ryan would have 80% chance of surviving with 50% chance of having disabilities.  We said please do whatever to save our son.  Off they wheeled Mom to the OR as an emergency c-section had to be done.  As we wheeled down the hall, a nurse was doing an ultrasound to make sure they were on top of the situation.  By the time we got to the OR Mom was needing to push and of course everyone said do not push!  So Mom started saying help me and I need to push!  Dad had to stay outside the OR since it was an emergency c-section so he didn't know what was going on.  They put Mom out and delivered Ryan pretty fast at 8 p.m. weighing in at 2 lbs 2 oz & 14 inches long - Dad followed Ryan down to the NICU within 15 minutes of Mom being wheeled into the OR.  Mom woke up an hour or so later to find Dad & Aunt Lindsey standing there.  They had been going back & forth between the NICU and the recovery room.  After recovering for another hour or so they wheeled her down to the NICU to see him.  They said his skin is very fragile so don't rub him and what does Mom do - rubs his foot.  It was just an instinct and Mom knew it was wrong but she couldn't help herself.  UGH!  It was a very hard day in that you have this wonderful event of a new life being born but then you know how very sick this little guy is and how small he is and you are scared to death.  It was very overwhelming to be so excited to meet him but so scared that he wouldn't make it.  We have definitely started the emotional rollercoaster that they said we would be on.  Back to Ryan's Blog.   

July 27, 2007 - Currently on the Jet Respirator, sends 380 small pulses a minute to him.

July 29, 2007 - Changed to self breathing respirator, will breath for him when needed. Had Breast Milk for First Time (3 ml over 3 hours). Blood vessel that had not closed properly finally closed on its own with some medicine. Was taken off blood pressure medicine. He currently has some blood leaking in his brain (This has stabilized and will continue to be monitored).  Blood leaking is currently his biggest obstacle to overcome.

July 30, 2007 - Had a good day.  He didn't digest breast milk last night so they will try again in a few days.  Doctor said this is normal.  His lungs are doing so well that they are taking him off the ventilator tomorrow and putting him on a CPAP (tube in nose).  Color looks good today.  He has been laying on his stomach so they can get the bruising on his back to go away.  Holly got to change his diaper (size of a dollar bill) and take his temperature.

July 31, 2007 - Had an up and down day.  He had a PICC line inserted into his leg that runs to his heart.  He was moved to a CPAP line in his nose for breathing.  He received his first caffeine to stimulate breathing.  He did well with that for a few hours and then started having spells where he would stop breathing.  At 1 AM the hospital called to let us know that he had stopped breathing a few other times and they were putting him back on the assist ventilator.

August 1, 2007 - Tried breast milk twice and had some troubles, they will continue to try.  Continuing to give him caffeine in the afternoon to stimulate him to breath so he can get off the ventilator.  Continuing UV light because his Bilirubin is a little high right now.  Had a quiet day recovering from previous day's activity.

August 2, 2007 - He was very active today.  He found his fingers for the first time and he couldn't keep his legs cuddled up to him.  He has to stretch out.  He held our fingers for a while.  They fed him twice but they stopped after the second time because he is still unable to digest.

August 3, 2007 - (no pictures) He has been having trouble sleeping so they decided to make his room quieter.  They covered his incubator with a sound proof blanket and closed doors and curtains.  They also restricted visitation so that there wasn't any stimulation.  He finally slept over night getting a good 4 hours of sleep.  They did a brain scan and there was no change which they said was a good thing.  They did a chest and abdominal x-ray today to try and see if there was a reason he wasn't digesting food.  As a result of the x-ray they decided to stop feedings until next week.  His blood sugar was a little high so they gave him some insulin and will continue to monitor.  He also received a blood transfusion this morning and tonight.  His eyes are getting really close to opening.

August 4, 2007 - Ryan had a quiet day of much needed rest.  He was a little feisty in the evening.

August 5, 2007 - He was quiet this morning except when Mom changed his diaper and Dad cleaned out his mouth.  He quieted down pretty quick once he was put on his belly.  His right eye is almost open.  His eye lid is about 30% separated.  In a few days he will know what the people look like that are messing with him.  He had a really good afternoon of sleep.  This evening while we were there he lowered his oxygen to levels below Mom's comfort level, stress stress stress.  Talked to the nurse practitioner and she said he is doing good.  They want to start weaning him off the ventilator this week and try him on his own again.  They are also going to try breast milk again this week.  Ryan also had an echocardiogram of his heart to check for any issues.  None found.

August 6, 2007 - Chest x-rays have not been looking good.  They gave him laysics to flush the fluids.  His afternoon x-ray looked much better.  He is up to 2 lbs. 6 oz., this is a little inflated because of fluid buildup.  His right eye is getting closer to being open.  Overall he looked very rested and quiet.  Holly got a all clear to drive from her doctor, she is healing well.  Still no lifting or exercise.

August 7, 2007 - Morning chest x-ray was worse then the night before, he received more laysics.  His blood sugar levels have leveled off at a good level because they adjusted his nutrition.  Still under the UV light because his Bilirubin levels are high.  Changed him to the ventilator that makes him drive and will help as needed.  Nurse Suzi let us hold and kiss Ryan for the first time today, it wasn't much but it was much needed.  He is still very small but he must have known it was us because he relaxed and his vital signs went to their highest level.

August 8, 2007 - He was put on Dopamine to help get fluids through his body by kick starting his kidneys. 

August 9, 2007 - Ryan's eyes are open!!!  Today the UV light was turned off and his eyes were uncovered.  The nurse said that he looked at her during a diaper change.  While we were in talking to him he opened his eyes to see us.  It was only for a short time before he went back to sleep but it was really exciting.  The Dopamine has worked because he has had more wet diapers today then in the past.

August 10, 2007 - Today was an emotional rollercoaster day.  The echocardiogram showed that the vessel (PDA) that had previously closed with the baby ibuprofen had reopened - probably due to the festivities of last week with the CPAP.  It was decided that they needed to go in surgically to fix it so that Ryan could get his lungs to clear up so we could move on to the next issue.  The surgery is slated for Saturday.  While we hate that he will have to have surgery, at least there is a fix and it can finally be explained why he has gone down hill with his lungs when he had been doing so well.  Then we got news that the head ultrasound showed a little bit more bleeding and there is talk that maybe they will do a lumbar puncture to release some of that but that will be after Ryan is healed from surgery.  It was also found that there is a cerebral mass change so a neurologist will be consulted next week as well as an MRI will need to be done to see how bad it is.  We were told that this change could mean Ryan could have issues with either his lower or upper extremities that could be unnoticeable or could be cerebral palsy.  Very hard news for to hear.  On a happier note when Holly got to the hospital this morning she was told she would get to hold Ryan skin to skin.  Holly held him for 2 hours and Ryan really loved it.  His numbers were really good.  Scott got to hold him for an hour in the evening and Ryan did even better.  The nurses said after they put him back in the incubator after Holly held him that they heard belly gurgling which is a good thing.  Maybe his stomach and intestines are waking up and will take some food this next week. 

August 11, 2007 (no pictures) - We got a call from the surgeon explaining the procedure to fix the PDA vessel.  He said surgery was slated for 11:20 a.m. (it was 10 when he called) and we needed to sign consent forms.  So we hurried down to the hospital and were with Ryan until the surgery team was ready to start.  Ryan did wonderful through the surgery and will be sedated for the rest of the day and probably some of tomorrow.  Mom & Dad are relieved and he looked really good after surgery.  The nurse today also said she heard belly gurgling.

August 12, 2007 (no pictures) - At 12:30 a.m. the doctor called saying they needed to move Ryan to an oscillator because he had some inflammation in his lungs and this respirator would do more of the work for him and be easier on his lungs.  They also wanted to put in an arterial line so they could draw blood for blood gas tests (much easier than poking Ryan's foot every time).  When we got down to see him today they said they were unable to put in the arterial line so they will continue to poke him but they weren't needing to do it as often as they thought because his numbers were good.  His is having problems with his oxygen levels so he has been making the respiratory therapist work hard today.  They were concerned with having to have his oxygen assist at 80% when prior to surgery he was in the 30% range.  He was a bit uncomfortable and working himself up so they increased his morphine and gave him a sedative.  Poor little guy.  They said the 1st 24-48 hours would be rough as they get the inflammation & fluids down and he recovers from his surgery.  They did say his chest X-ray this evening looked better than this morning so hopefully that will continue.  

August 13, 2007 (no pictures) - Today has been a good day for Ryan.  The doctors are pleased with his chest x-ray.  When they suctioned his lungs today they got quite a bit less out than yesterday so that is a good sign he is healing.  They are going to give him one more day of recovery so he'll probably be sedated for another day.  He looked like he was resting very peacefully today and his stats looked good.  They were able to get his oxygen down to 25% until the doctor got in with him this morning.  He got aggravated so they bumped him up into the 30s.  We'll take the 30s over the 80s yesterday.  The doctors have consulted with a neurosurgeon and he will be reviewing Ryan's info and then a course of action will be determined for his brain bleed and the cerebral mass.  Ryan's weight is up - he weighed 1140 grams (2 lbs 8 oz), which last time we asked last week he was 1077 grams (2 lbs 6 oz).  Granted this number is a little inflated because of the fluids and they expect his weight to be down tomorrow since he has been peeing a lot today.  His little nose is getting more defined (at least to Mom and Grandma) and he looked so cute.  They have started to wean him from the Dopamine as his kidneys seem to have kicked into gear, which Mom got to witness when she tried to change his diaper.  As soon as she opened his diaper he peed on the new diaper.  Mom and the nurse thought he was done so they got another new diaper and he let loose again.  Little stinker.  The 3rd diaper was the charm though! 

August 14, 2007 (no pictures) - Ryan had another good day.  The doctors are pleased with his recovery and will start weaning him off the morphine tomorrow.  The neurosurgeon came by today and unfortunately no one could read the notes he left in the chart so they had to find out what he said.  Apparently once Ryan recovers from his surgery and gets moved to a different ventilator then the neurosurgeon will want to run more tests like MRI and CT.  Hopefully that is a good sign that what ever is going on in his brain isn't so bad that it is urgent to get these tests done.  Unfortunately they don't have portable machines that come to Ryan so they have to wait until he is on a ventilator that will move easier than the one he is on.  He looked like he was sleeping good and was pretty peaceful looking.  His oxygen levels are in the 30s today but over last night it sounded like he did stay in the 20s.  He was on his tummy, which he loves so that is probably why his numbers were so good. 

August 15, 2007 - Ryan had a rough night.  His oxygen was 60-100 (we want 20-30s) so this morning the respiratory tech decided to put him on the jet respirator.  He became a happy camper and was in the 30s.  We guess increasing his oxygen rate was how he told them he had had enough of the oscillator.  We got news today that the neurosurgeon had done some more reviewing and decided he'd like to be proactive on Ryan's brain bleed and wants to put a shunt in to drain the fluid from Ryan's brain.  The fluid will be moved from inside his brain to the outside of his skull, this way the fluid can reabsorb through the brain.  The blood in the spinal fluid can cause the natural flow of spinal fluid to get clogged and this shunt will assist in keeping a kind of natural flow.  This shunt is said to not be permanent.  As of right now it is scheduled for Monday as long as he gets a bit more stable from recovering from Saturday's surgery.  He looked good today and when we were there at 5 p.m. he hadn't had a sedative since around 8 so that's good.  He was moving a little bit which was nice to see since he's been sedated and has been sleeping a lot.  When we left his oxygen was still in the 30s and he seemed to be doing really good.  The doctor said they are going to give him a few more days of recovery before thinking about moving to any other ventilator.  There will be another head ultrasound on Friday and the neurosurgeon will review it and then see how Ryan is doing and then should determine if surgery will happen on Monday.   

August 16, 2007 - Ryan has had quite a day.  He was doing ok when Mom went to see him this morning but then his CO2 numbers were up into the 90s (we want 30-50 I believe).  We know the sensor that they put on him goes whacky a lot (they have to recalibrate a lot) and the blood gas is a lot more accurate so they took a blood gas and CO2 came back 62 (still high but way better than in the 90s).  So they repositioned Ryan and the numbers didn't drop a lot so the respiratory tech was checking him and thought his tube might not be set right so she asked another tech to come check him and they both thought the tube wasn't right and they needed to put a new tube in plus they thought he needed a bigger size (that he had out grew the old tube).  They put a new tube in and his numbers were much better afterwards - sounds like that is what he really needed.  Then this afternoon they decided they needed to move his PICC line to a better place (we assume they realized this from the chest x-ray from the changing of his breathing tube).  They said he did wonderful during the procedure.  (Ryan is known to not like being bothered and he'll let you know it by dropping his numbers as well as kicking his legs and moving.  He is definitely Holly's son!)  This evening he was doing well especially after they moved him to his belly (which he loves) and they think this new bigger tube is helping break up some of the mucous left in his lungs - they got some good stuff when they suctioned him.  His weight was up to 2 lbs. 9 oz. today unfortunately there is a bit inflated from fluid build up.  It is expected to go down tomorrow.

August 17, 2007 (no pictures) - Ryan had a good day today, still up and down.  He made the nurse work a lot.  Talked to the Neurosurgeon about Ryan's head.  He said that the fluid in his brain was cloudy from the blood that was leaking.  He did say that the bleeding had stopped.  Now what needs to be done is get the cloudy fluid out of the brain and let the body clean it up.  To do this they will have to put in a shunt that moves the fluid from inside the brain to a pocket that will be created between the skull and scalp.  The body will naturally break down this fluid once it is outside the brain.  Once the fluid gets cleaned up the body should start to break down the blood clots that have formed inside the pores that drain the fluid naturally.  Hopefully with the help from the shunt (it will be in 4 to 6 weeks) and the body breaking down the blood clots Ryan will be able to have the shunt taken out and not have to have a permanent one put in.  Surgery is tentatively scheduled for Monday.  They did an echocardiogram on his heart because they heard a murmur and wanted to make sure it wasn't something new.  The results said that there wasn't anything new.  The doctor believes it is a natural murmur that is nothing to worry about.

August 18, 2007 (no pictures) - Today was moving day for Ryan, he got moved to his own room that is a lot quieter.  The new room doesn't have carpet so it is better for surgery.  He did very good today and was looking around at us while we were in talking to him.  The doctors started lowering the amount of Dopamine that he is getting.  Their hope is to get him off of it tomorrow.  Ryan did have some head growth and the Neurosurgeon was in to check on him.  He said that it looks like he is filling up, meaning his brain is still filling with fluid.  He did say that if Ryan wasn't stable enough for surgery that he could go in and draw some of the fluid out.  He doesn't like to do this but he will to help relieve pressure temporarily.

August 19, 2007 (no pictures) - Today was a really good day for Ryan, maybe he is finally recovered from his previous surgery.  His oxygen need was around 25% today.  This is very good because he has been up in the 80's and 90's.  21% is what we breath.  He is done with the Dopamine for now.  Ryan was again looking around and Grandpa McC got to see his eyes open for the first time.  The Neurosurgeon was in again today and checked his head.  He felt areas starting to get firm which means the fluids are still building.  What kind of surgery Ryan is having Monday is still up in the air.  They want to see how he does tonight and what the head ultrasound says in the morning.  Either way there is going to be some kind of surgery.

August 20, 2007 (no pictures) - Ryan must have known surgery was planned for today because he was a stinker.  His numbers were up and down, they had to start up the Dopamine again because his blood pressure was too low (and then later was going too high) and he was flailing around so they gave morphine and pento (the sedative).  When we first arrived at the hospital we were told the surgery was probably not going to happen because of his numbers but they might do a tap .  Then later when the doctor came in and Ryan had stabilized a little he thought surgery might be on.  Then we waited and waited and waited.  The neurosurgeon was in surgery all day.  Finally around 8 p.m. he made it in.  He checked Ryan and saw his numbers were all over the place and said probably doing the tap would be best until he gets more stable.  With this tap, a needle is put into Ryan's soft spot and down into his brain.  Then fluid drains out over about 15 minutes.  He said for babies Ryan's size they hope to get 13 to 20 ccs.  No numbing medicine was given because it would be worse than the quick pin prick when the doctor puts the needle in.  Once the needle gets into the brain Ryan wouldn't really feel anything.  So we waited in the NICU waiting room for about 20 minutes and then the neurosurgeon came out and said Ryan did great and he got 30 ccs (he was pleased).  He's going to check Ryan in a day or so and if the fluid left starts building again he'll do another tap or if Ryan decides to get a bit more stable then he'll do the shunt.  When we saw Ryan afterwards his numbers were looking good and while he wasn't really happy being bothered he was handling it really well.  The nurse got the doctor to write the order so she could swaddle Ryan.  We all think he needs it but because he is under 1500 grams they have to have doctor's orders to do it.  He needs the containment so I'm glad they finally got the orders!  His weight is up again today - over 1300 grams (2 lbs 14 oz)!  Granted some of this is fluid buildup but he has had really big diapers lately so not all of it is!  We might make 3 lbs. yet! 

August 21, 2007 - Ryan has had a good day.  He had a rough night, which the neurosurgeon said could happen because of adjusting to not having pressure on his head but he expected that to be over within 24 hours.  The nurse said he was doing better by 1 a.m.  They had to stop swaddling him because he was getting too warm.  We're going to try different blankets today to see if he does better with them.  Today his numbers have been good and the nurse hasn't had to give him extra morphine or pento (the sedative) since 5 a.m.  He was moving around a little bit and had his eyes open when Mom was talking to him.  And he weighed in at 2 lbs. 15 1/2 oz.  Only 1/2 oz. more until we hit 3 lbs!  They started feeding him breast milk at 2 p.m.  They are doing 4 ml over 6 hours.  Keep your fingers crossed for poopy diapers! 

We just got back from seeing Ryan this evening and he accepted the milk from the first feeding!  When Mom changed his diaper there was even a little mucous poopy.  They were starting the next set of feedings so we'll see how he does with this one.  We found out the neurosurgeon stopped by today and was pleased with how Ryan was so he has ordered an ultrasound in the morning and then, depending on how Ryan is, surgery to put the shunt in may happen.  Let's hope Ryan doesn't know something is up - Mom and Dad want to get this surgery over with so he can continue to recover. 

August 22, 2007 - Ryan has continued to accept the milk.  The doctors are pleased and are changing his feeding to 4 ml over 3 hours instead of 6.  Let's hope he continues to take it!  They are going to start weaning him off of the morphine drip and since he is almost a month old he will be getting his Hepatitis B shot.  Can you believe he has been with us 4 weeks already?  He now weighs 3 lbs.  Very exciting.  He had his eyes open when Mom was there talking to him this morning and he was doing good - his oxygen was in the 30s.  We have a Care Conference (meeting with the docs) this afternoon and Dr. Snyder said he has some ideas for helping Ryan's lungs.  Also the neurosurgeon will be reviewing the head ultrasound from this morning and we'll hear if surgery is happening today at the meeting. 

Our meeting with the doctor went really well.  He went over all the issues Ryan has from head to foot.  Here's the latest.  The cerebral mass change we noted a couple weeks ago has to do with his brain bleed.  Basically what they are seeing is that the bleed on the right side is worse than the left.  It is a level 4 not a 3 as originally thought (the scale again is 1 being not bad to 4 being bad).  Based on where the bleed is at and statistics and what they have seen they do believe there is some brain damage and the type of damage they expect will be motor skills on his left side but they don't know to what degree.  We will work with physical therapists/occupational therapists to work on this as he gets older.  But they also cannot say if this is what problem he will for sure have.  Until he gets older and we see signs we won't know.  The bleeding has stopped but it has basically caused a dam so the spinal fluid cannot circulate down the spine and back up so that is causing the fluid buildup that the neurosurgeon is trying to deal with.  Ryan's system will break down the blood but it will take weeks.  The neurosurgeon is going to do another tap tonight or tomorrow.  Surgery is on hold until next week.  This is because the doctor wants to try a steroid (decadrone I believe) that should help clear up the problem in his lungs.  He'll get the steroid over the next 5 days and then we'll see how he looks and then surgery could be back on.  They also expect at that time to be able to get him on the conventional ventilator (the one where he gets to do the driving) around that time which will mean Mom and Dad will get to start holding him a lot more!  He will still have some lung disease but he should be much better.  They do expect when we get to take him home in November that he will go home on oxygen and will be on it for a while longer.  They need to watch his eyes because at the age he is now the blood vessels are developing and if they develop too aggressively there could be damage.  They do hear a murmur but it is not anything really to be concerned about.  His heart looks good as do his kidneys.  They will have to watch his liver because being on the nutrients that they give him could cause some liver issues - that is why they want him on the breast milk as soon as possible.  If he can continue to at least tolerate some breast milk, they believe there might not be any issues with his liver.  We won't be to the point where Mom will get to breast feed him for 4 or more weeks as he still needs to learn the suck, swallow, breath routine.  He will have to be watched very closely for infections - some of which could be life threatening but so far so good.  His skin has developed really nicely which will help him not get infections.  Ryan really likes being swaddled - he was looking really happy and comfortable.  He still seems to be taking the milk and had another mucous poopy in this afternoon's diaper. 

August 23, 2007 - Ryan had another tap today.  The neurosurgeon got 36 ccs out this time.  It took Ryan about 4 hours to recover after the procedure again.  Holly's brother's wife was in town for a training class so Ryan got to meet his Aunt Diane today.  He is continuing to take the breast milk but no poopy diapers yet.  It has to come out sometime - probably a big explosion will happen.  Mom and Dad started moving into their new house today - just to add more stress to our lives!  Hopefully we can get settled soon!

August 24, 2007 (no pictures) - Ryan got moved up to the conventional ventilator today.  He is a much happier camper to be able to drive the breathing we think and his numbers are back down in to the 20s.  He is still taking the milk and they are up to 8 ml.  Still no poopy diapers - you would think the enemas they are giving him would do the trick but not yet.  Mom got to change his diaper and take his temperature today.

August 25, 2007 - Ryan is a month old today.  He weighed in at 1390 grams so over 3 lbs.  He is up to 12 ml on milk and they are going to hold him there for a while.  Still no poopy diaper but they have put a bigger sized diaper on him just in case of an explosion.  We thought the other diapers were big on him but these new diapers are even bigger!  Dad got to change his diaper today and was a little surprised when the nurse handed him the bigger diaper.  Mom got to hold Ryan for a couple hours today (hopefully Dad gets to hold him tomorrow).  He did well but by the end he either had enough or was trying to get a stool out as he was getting unhappy and squirming a bit.  So we put him back in bed and worked on settling him down.  They have started to weaning the morphine drip.  We spoke with the doctor and he was happy to see us getting to hold Ryan.  The doctor said that they are going to keep Ryan on the steroids a couple extra days (until Wednesday) so they can work on getting him off the ventilator.  They said having him still on the steroids will help as they transition him to the CPAP.  He also said that the neurosurgeon was out until Monday but he would probably decide then on if he needed a shunt or not.  We got the impression that the doctor wasn't sure if Ryan needed the shunt now.  We'll have to see what the neurosurgeon says Monday.  If he does need the shunt we expect that surgery will take place by Wednesday as well.  It is going to be a busy week.  Side note - as you may notice some of the photos are a little blurry.  This is because we try not to use the flash.

August 26, 2007 - Ryan had another good day.  No poopy diaper yet but he is up to 13 ml on food.  Dad got to hold him today and Grandma & Grandpa McC were there as well as Aunt Lindsey.  It was great for them to see him outside of the incubator. 

August 27, 2007 - Feedings have been stopped today as Ryan's poor little belly is just too full and still no poopy diapers.  After the neurosurgeon decides on surgery, the doctor's plan to put a contrast enema in to see what is going on with Ryan's intestines.  No changes will be made to the ventilator until the neurosurgeon decides as well.  Ryan's oxygen was down to 22% this evening, which is great!  He got a blood transfusion as his tank was a little low and his body has not kicked in to creating new red blood cells yet. 

August 28, 2007 (no pictures) - Back on the rollercoaster we go...Ryan has had a rough day.  Poor little thing still isn't pooping and now he isn't really peeing.  Some tests came back with his numbers out of whack so they think he has an infection.  They have started antibiotics.  They have done some cultures and hope to know tomorrow if there is truly an infection and where.  Ryan's blood pressure is a little low so they started him on Dopamine again, which should also help his kidneys kick up and this afternoon there were pleased with his responsiveness (his peeing has kicked up a little).  He is going to be getting a blood transfusion this evening.  The feedings are still on hold.  His belly is looking a little softer than yesterday but still really full.  They hope to be able to do the contrast enema in the next couple days.  The neurosurgeon has not made it in yet - we are to meet with him late tomorrow afternoon.  Surgery cannot happen now until Ryan gets over this infection.  On a good note he looks good and his ventilator settings are great.  Poor little guy has been through a lot.  Please keep praying for him.  He still has a long way to go.

August 29, 2007 (no pictures) - Ryan has had a much better day.  All cultures came back negative for infection so the doctors are wondering if it might have been him coming off the steroids that caused his numbers to shift.  He is still on antibiotics just in case there is an infection somewhere.  We met with the neurosurgeon this evening.  He is pleased that the fluid in the ventricles are not as full as they were before the two taps and it looks like the blood is healing.  The ultrasound is showing a little more damage.  We thought this was new damage but the neurosurgeon said it is damage that occurred back when all the bleeding occurred but is now just showing up on the ultrasounds.  He made it sound like it was not much more brain damage.  We are not sure what this means but we were told it looks like motor skill damage on the right side.  The neurosurgeon will look at doing the shunt next week if Ryan is better and stable.  He said it isn't urgent to do it but needs to be done.  If we can wait another week or two, Ryan could do much better (give his skin a couple more weeks to get thicker so the stitches close, etc.). 

August 30, 2007 (no pictures) - Ryan has had a good day.  Although he started off causing the nurses grief.  Overnight they were adjusting his position, moving his head from one side to the other, when he didn't want his head moved so he tried to move it back and pulled out his tube.  Then he smiled at them we were told.  Stinker.  He definitely has a mind of his own.  We had thought all cultures came back yesterday but apparently his lung culture came back today and it was positive for bacteria so there is an infection.  The resp tech has been getting lots of white junk out of his lungs so hopefully he's getting better.  His oxygen levels are great - it was between 23 and 25% both times when Mom and/or Dad were there today.  He was definitely a happy boy when Mom and/or Dad were talking with him.  This evening while Mom and Dad were visiting before the BSU football game, he finally had a poopy diaper.  Maybe his system is waking back up!  Mom and Dad can't tell you how happy they are about this!  He weighed in today at 1513 grams so just over 3 lbs 5 oz.  As usual, it is slightly inflated with fluids and stool but we are very happy that he is growing!  If he is anything like Mom and Dad, putting on weight and eating will be no problem!

August 31, 2007 (no pictures) - It is 6:30 a.m. as Mom writes and the nurse just told me he had another poopy diaper.  This one was looking more like the normal newborn baby poop.  Yeah!  She said his night was uneventful (no tube pulling) and his oxygen has been between 21-25%.  Let's hope the rest of his day continues like this...Well of course the day could not stay uneventful.  Ryan just cannot seem to catch a break.  The neurosurgeon did a tap today (took 40 ccs), which Ryan did really well and recovered really fast from, so they could test his spinal fluid for infection.  We had assumed his infection was in his lungs but that is not true.  His numbers are off in a way that they suspect he has ventriculitis (a type of meningitis if we heard correctly), which they will treat with antibiotics but an infection in the brain is not good especially in a little guy like this with not much of an immune system.  The initial numbers that came back late this evening were promising but until the cultures come back in 3-5 days we won't know for sure.  This pushes out when the shunt can go in.  When we spoke on the 29th about the brain damage we were made aware of that day and we got the impression it wasn't bad - after doing some reading on the condition (called periventricular leukomalacia or PVL) it actually may be worse than the brain bleed.  Only time will tell how bad his damage is.  When he gets a little older and more stable they can do an MRI that may help us know more.  Of course all of this kills Mom and Dad.  No parent wants to see their kid go through this.  He's such a precious little guy that he doesn't deserve this so please keep praying for him.  On a better note he has had more poopy diapers.  Mom got to help give him a spit bath during lunch, which Ryan didn't like very much.  Mom gave him oral cares twice today and he did great sucking on the sponge that is used to clean out his mouth.  We're hopeful that since there are poopy diapers feedings can start back up soon.