We're officially zero days old!

That was supposed to be the title of yesterday's post, but if you have been reading on Facebook, you know yesterday got kind of busy.  Yesterday was Shiloh's actual due date.  It is a big day because that is the day we use to calculate adjusted age in order to determine developmental milestones.  Basically, yesterday we crossed mile marker zero.

But what a day!  When we woke up yesterday morning, you could tell right away the little man did not feel good.  He was lethargic and a little warm.  He was spitting up a bit more than usual, and at one point he spit up on my chest and it was just about hot.  We promptly took his temperature a few times.  For most people, the reading would not have said fever.  His axillary (under the arm) temps were ranging between 98.7-99 degrees.  Normal, I know, but he always runs between 97.7-98.1.  He was a complete degree higher than he usually runs.  Couple that with the hot spit up and lethargy on a premature baby and you have a need for a doctor visit.

So we called the doctor we had set up with our FirstCare.  The hospital had said it would probably be better to go to a general practitioner for his normal visits so he wouldn't have to drive an hour every time.  So, we call, and we are told they are not comfortable seeing babies.  They would rather we actually drive in and see an actual pediatrician.  So, we get back out our provider directory and start the search again.  Here was the first problem of the day.  It is also where I will take a short break to rant about Obamacare so if that will offend you, skip the next paragraph.

Shiloh is on one of the CHIPS programs for health insurance.  CHIPS is a program that guarantees children health coverage in Texas.  It is a system based on a sliding scale of household income.  The bottom scale is medicaid and the top scale requires a small deductible per year.  This makes sure that all children in the state of Texas have adequate coverage in their formative years even if their parents cannot afford private insurance.  Well, the problem is the government has stopped paying their claims on all of these programs.  CHIPS, Medicaid, and Medicare are not being reimbursed as they should be so doctors have quit accepting patients with these coverages.  They know they will not get paid so they just won't accept the patient.  It is almost impossible to find a doctor who will take you on with these coverages.  So now think about this.  In 2014, the government is supposed to start paying subsidies for individuals and families who cannot afford health care on their own.  These subsidies are supposed to cover the monthly premiums for individuals who cannot afford them on their own.  So, why do we believe that if the government is NOT PAYING claims on its medical programs it runs now that it WILL PAY  the subsidies on time when this program goes into affect?  So, if the government continues to run par for the course and does not pay the money it owes to the insurance companies like it is with the doctors, the insurance companies will be forced to deny claims and not pay the doctors the money they were promised when the claim was made.  If every insurance company in America is in one of the exchanges in some state, then every insurance company will be forced to begin denying claims and not paying the claims they owe to doctors.  You know what doctors will do then?  They will quit taking insurance completely!  If you do not believe me, come to Midland, Odessa, or Amarillo, Texas and try to become a new patient using a government health plan like CHIPS, Medicaid, or Medicare.  This folks is the future of our medical system in America.  While I do like the fact that people with preexisting conditions can get insurance, the rest will ruin us.  Back to our story.

So, after having called many on our list and being told the same thing, we called FirstCare.  They then began calling and found the same thing, but they did find one doctor who would take new patients.  He had been highly recommended, and we were excited, until we called. When we tried to make an appointment, we were informed he would only accept new patients he had seen in the hospital.  Crushed, we turned back to FirstCare.  They eventually found us someone who would take us, but they had never heard of him, and neither had anybody at the hospital.  We reluctantly called to make an appointment only to be told they couldn't see him for a week or two.  We made the appointment, but still had a sick baby.

So we decided to go to the ER at the hospital he had already been at in the NICU because they would have his records.  Of course, by the time we got there, he was no longer running a fever, but they put him through the tests anyway.  Three hours later, the doctor said his labs were all great, but his lung xray "showed something going on" and since he was a preemie she wanted to keep him overnight.  They moved him upstairs, but everyone just stayed confused.  The doctor had told them bronchitis, but the symptoms didn't fit.  When the pediatric doctor got there, he was also confused.  He said the ER doc said the xray showed a bilateral pneumonia. He had called the NICU doc and he said put him on strong IV antibiotics for a few days, but he was hesitant to do so.  His reason was he was looking at the baby and not the xray.  The xray may have said pneumonia, but his lungs sounded the healthiest they have ever sounded, he was having oxygen saturation levels at 100 percent consistently, he had no cough, no runny nose, and no congestion.  His symptoms were not consistent with the xray.  So, we would watch him overnight to see what was what.  Today he has been fine and his normal self.  At this point the xray is being written off as a bad xray or a fluke.  Oh, and the doctor we were admitted under was the one who came recommended and would only see new patients he had seen in the hospital!  So, we got our choice pediatrician.

We did accomplish a few things this hospital stay.  We upped his reflux medicine a bit and explored different ways to help reflux to be lessened.  The doctor put us on a vitamin to make sure his iron and Vitamin D stay good.  We finally got a weight.  Last night, he weighed 6 lbs 14 oz and was 21 inches long.  So, he has gained almost 2 lbs and 4 inches since birth!  It's like the staff has told Carrie, "He was going to be a 10 lb baby!"  So, that is our wonderful day zero.  Now, I am going to add some prayer requests and pictures and go to church.

Prayer Requests:

1. He continues to grow and improve
2. Reflux would get better with age
3. We can pay off the debt we have accrued since he has been in the hospital
4. When his public debut comes, his immune system will handle it well

Week 1 in the books!

    Well, we have officially been at home with Shiloh for one week.  This past week has been trying at times and blessed at others, but overall the week has been wonderful.  Shiloh has had to get used to his new environment and that isn't always easy.  First, there was the problem of the quiet he wasn't used to.  Then, we had to get used to the idea of true demand feeding.  The NICU version of demand feeding was to only feed him every 3 1/2 - 4 hours unless he was so demanding nothing else would soothe him.  The real version means he is eating on average every 2 hours, whenever he starts showing the signs of hunger.  This seemed like a lot until we pulled out the sewing tape yesterday and measured him from the crown of his head to the heel of his foot.  The boy shows to be 19".  Not an official doctor figure, but pretty close.  That means he has grown almost 2" in 1 1/2 months.  Takes a lot feeding to become a big boy!  So, most of the feeding issues have been resolved.  Then there was the getting him to sleep.  The only way the kid would sleep is if we were holding him.  Problem is, I could only sleep sitting up on the couch for so long.  We struggled with this every night until last night. Our habit had been Carrie would be up most of the night with him.  Then at 5:30-6 in the morning, I would take him with me to the living room where Carrie would get her 3-5 hours of sleep in the bedroom.   Last night we rearranged.  The glider rocker was brought into our bedroom.  So, when he wakes to feed at night, Carrie takes him to the nursery to change him which helps him to wake even more before feeding.  She then came back to the rocker for feeding.  Once he was fed, she would burp and then swaddle him.  Once swaddled, she returned to the rocker to rock him for about 5-10 minutes.  At this point, he is sound asleep and is able to be transferred to the bassinet where he would sleep uninterrupted for 2-3 hours at a stretch.  Carrie woke up this morning and said, "I actually got to sleep last night."  So, if everything goes well, we may have a good schedule now....fingers crossed.

We only have two real issues.  First, he is a very hard burper.  Sometimes you can do everything under the sun to try and burp him and it just won't happen.  Of course this means he will spit up a little later.  Still trying to find ways to make that easier, but no trick we have found or been told has worked 100% of the time yet. Also, we still are having problems mastering the temperature taking, and we are considering one of the temporal artery thermometers.  He can feel warm and only shows a temp of 96.9.  Happened all the time in NICU also, but they were able to retake it and get a better reading.  Us, not so much.  Now, we must talk with the NICU about the schedule he is to be on for shots since it is slightly different because of his prematurity.  All in all, our days are easier and better.  Shiloh even took his first car ride yesterday.  Since everywhere we go is a drive, we want to make sure he is used to riding in the car.  We went to the little town 20 miles over to get groceries (I got groceries while Carrie and Shiloh stayed in the running van).  Not out in public, but it got Carrie and Shiloh both out of the house rather than being cooped up all of the time.  We are expectantly waiting for the end of September so Shiloh can  be introduced to the world.  On August 29, we will be going to Midland for his circumcision.  Not going to be a fun day overall, but it is the best time to get it done.
I know this post has rambled, but I wanted to be sure I covered everything I could.

Prayer requests:

1. Pray we keep making advances 
2. Pray that he continues to grow and hits benchmarks on time
3. Pray for the circumcision - healing time, financial aspects
4. Pray for rest and perseverance for us all.

He's Home.....Now What?

Well, he came home Thursday, much to our surprise.  I had not even left Rankin yet for my visit when Carrie called and said they are sending us home.  So, I rushed to Best Buy and bought a freezer for the milk, met with the people to give the 5th wheel key back, and then went and picked up our little family.  We had a stop at the pharmacy on the way home to get his prevacid, and we were off.  We got home, and watched him intently for a few hours hoping he would just keep breathing.  (You get kind of used to a monitor with numbers that give a little assurance when you can't see the rise and fall of his chest due to swaddling)  The first night was rough because our house was too quiet.  Poor Shiloh could not rest.  I made a mad dash to the store in Midland yesterday and got groceries and a few things for the house (namely a diaper pail since he can't fit the cloth yet).  While I was there I got a sound machine, and there is one sound on it that puts him right to sleep.  There is another sound that sounds like a demon talking, but that's another post.  Last night slept completely except for his feedings which means that mom slept well too.  So now we're home, and we're in a routine.  You may be wondering now what?

Honestly, for the next few weeks, this will still be a blog about his growth and progress only.  It will always be that, but our vision for www.wheresshiloh.com is so much bigger than just a set of updates.  Out is West Texas, and the Permian Basin as a whole, there is a lot of beautiful countryside.  Also, anyone who knows us knows our vacations are always driving vacations.  So, between family day trips on days off and family vacations, we hope to have fun with this blog/website.  When he is healthier and ready to be out more, we will begin putting pictures up of Shiloh in various places.  We want this to be a fun game of guessing where he is this week.  Sometimes the place will be an exact name, and other times, it will be an area, maybe an idea.  What we want is for this site to be a way that friends and family who are not immediately around us at all times can keep up with Shiloh and all of the things he is learning and experiencing.  So, as corny as it may be, register for an account and get ready to play.  It will be so rewarding when Shiloh gets older and we can show him how many people were interested in what he was doing and where he was.  Look for a picture soon, and put your thinking caps on.  There may even be prizes later...;)

One of these pics is not like the other..

We made a little change to the nursery.  See if you can spot the difference(s):

Keep watching...More to come!

Third Floor Life

Well, as we returned to the hospital Sunday night, we were surprised to find he was already on the 3rd floor.  The 3rd floor is the NICU step down unit. We saw him late Sunday night, and Carrie was able to get some very good help on the breastfeeding issues.  Carrie could have roomed in Monday night, but she wanted to come home and clean the house and prepare for him to be home very soon.  She will begin rooming in tonight.

Our day yesterday was a little frustrating because the nurse was a little scattered with 3-4 babies to care for so she only watched the monitor.  So, when he did what he had always done, she got a little too concerned.  Shiloh has always had a little oxygen desaturation as he wakes up and shortly after he eats, and since he only sleeps and eats, he has desaturation frequently.  Well, the nurse was concerned about it because she believed it was showing what was really happening as the caffeine he was on left his system.  She refused to listen to the fact that he had always done this.  To top it off, her theory made no sense because caffeine has a 6 hour half life. The small dose that had been given to him Saturday morning would not still be in his system. But she postponed the car seat test because of this.

When the Physician Assistant visited, she looked at the entire situation.  She saw he was desatting, but she also saw he was a little uncomfortable and had spit up.  She diagnosed him with relfux that we had been saying was an issue all along.  They have placed him on prevacid, and we have been told we should be seeing results shortly.

The 3rd floor comes with some changes.  Carrie at least can room in.  We haven't seen the rooms or asked about me, but we will find out  today.  Shift change takes less time which means we have more time in with Shiloh.  Shiloh can now have healthy adult visitors who are not on the list as long as they are accompanied by one of us.  We have not talked with the doctor, but we are assuming we are still on course for 5 days as long as he has no apnea and the reflux can be controlled.

Our prayer requests:

1. Lungs continue to develop
2. No apnea episodes
3. Reflux can be controlled
4. Passes the tests to come home
5. He gain weight on his own
6. Maintain his temperature
7. He continue to get better at breastfeeding
8. Finances & Travel

There was one other reason Carrie wanted to come home - finish the nursery.  So, included in these pics are nursery pics:

Today is brought to you by the number 5.

When I was young, my mom watched Sesame Street with me all the time.  And back then everyday had a different number.  It was a way the show used to teach children how to count.  On that day, everything was done around that number.  So, today as we visited and waited with Shiloh, I thought about how if this were Sesame Street, today would be brought to you by the number 5.

We left this morning to go visit.  We arrived at 11:15 and went inside.  This began our wait for the doctor or physician's assistant to come around so we could talk about a game plan.  Carrie left a couple of times during the day to pump, but I waited by Shiloh's bed for 5 hours on the physician assistant.  When the nurse finally got her to come talk to us, she spent 5 minutes with us talking about the game plan for Shiloh now that he is off of oxygen completely.

She said now the waiting game starts.  He will have to be monitored for a few days to make sure he is able to truly handle no oxygen flow.  Also, she then gave a choice.  We could speed things along and he could go home on the caffeine they are giving him for possible apnea, but we would have to get the very expensive prescription and he would have to wear a monitor full time.  The other choice was to wait a little longer and let them take him off of the caffeine and monitor him for a predetermined amount of days for apnea episodes.  If he has none, then he would be released to come home.

So, again this post is brought to you by the number 5.  I waited 5 hours to talk to the physician's assistant for 5 minutes to find out that as long as he has no apnea episodes, Shiloh will be coming home in 5 days!  We are first in line to be moved to the 3rd floor.  So, things are progressing quickly.

Our prayer requests:

1. Lungs will continue to develop and that he will have not episodes of apnea
2. He will gain weight by feeding
3. He will maintain body temperature
4. He will take to breastfeeding
5. Finances & Travel
6. Pass all tests and get out
7. Find a pediatrician
8. Smooth transition home

Thank you for your support and prayer

Pics:

What a day, what a day!

You ever have one of those days where you don't have enough time to get everything done?  Yeah, we did today, and to top it off we were on pins and needles all day waiting to see what the Doctor said.  We waited around as long as we could, but the doctor rounded late today so we missed him.  We did get to feed Shiloh today though, and Carrie got to try breastfeeding again.  He did better this time, but we still had to finish off with half a bottle.  Then, we came home.

We just called to check on him to see if there are any changes.  Well, there are 2.  First, he has been started on cue based feedings.  This means they feed him when he is hungry.  He will be allowed to go 4 hours between feedings, but if he wakes in between and is hungry, he will get fed.  This is a huge step to him coming home.  The second change is HE IS OFF OXYGEN COMPLETELY!  Now, like everything else in NICU, this begins as a trial run, but the nurse said so far he has been saturating wonderfully. So hopefully he will continue to saturate well and remain off the oxygen.

So, we are flying ever closer to coming home.  He has a few hurdles and tests to beat, but each of these things is one step closer.  So, I look for us to be moved to the third floor in the next few days, and then to come home.

So, what are our prayer requests?

1. He will do well off of oxygen and keep saturating like they need him to
2. He will do well on cue feeding and continue to gain weight
3. He will keep maintaining body temperature well
4. He will pass all the tests he must in order to come home
5. We will be moved to 3rd floor shortly
6. Finances
7. Travel for this last leg.
8. He will continue to get better at breastfeeding

Again, thank you all for your support, love, and prayers.