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.

Let me think about that

That was what I kept thinking as I took that picture.  I took it as I was holding him because it was a better angle. Today was a Daddy and Shiloh day.  Shiloh was not going to quit crying for anybody but Daddy.  When we walked in, he was madder than a hornet.  So, Daddy picked him up and held him for a while.  When my arms got tired I handed him to Mommy and oh my goodness he got mad again!  She tried everything to get him to calm down, but I said I would try, and immediately he quit crying.  Mommy got a little jealous, but we both know there are going to be those days for each of us.  Sometimes he's going to want me and sometimes he will want Carrie.  It really wasn't that big magic touch, I am just a little more "cuddly" and he is to the point where he throws a fit when he is hungry.

Which brings us to the big news of the day.  We made advances on 2 or 3 fronts depending on how you count.  First, he is down to 1 liter on his flow from his nasal cannula.  That is a lot quicker than we were expecting.  The day nurse today said there was a good chance he may come off supplemental air completely tomorrow.  So, we are seeing major improvement in his lungs.  Second, he is now getting his feedings completely by bottle.  Yesterday, they had changed him to every other feed by bottle, but he did so well they made him complete bottle feed.  Finally, Carrie got to try her "hand" at breastfeeding.  Shiloh did pretty good, but there were first time problems.  He did do better than we expected though because after her try, he was given his normal bottle to make sure he got his nutrients and he took the whole thing, but puked afterwards.  So he was getting more from Carrie than we thought.  Overall, today has been a great day and a giant step to bringing the Little Man home.

Our prayer requests:

1. He will come off of supplemental air quickly, and that lungs will continue to develop healthily 
2. That he will continue to gain weight on his own
3. That he maintain body temperature on his own
4. That he will continue to progress on only bottle/breastfeeding
5. That he will take to breastfeeding
6. Finances
7. Travel
8. He will pass all milestones and tests to come home
9. He will come home in the next week or so

Thank you all for your love and support.  Here are some pictures for your viewing pleasure.

That's what I call dinner!

Today was a very good day in the NICU.  We have made some progress on a few fronts.  First, his oxygen flow is down to 2 liters and the percent is 21%.  What this means is he is essentially breathing room air with no extra oxygen, but he is having a little air pushed to him to compensate for his little developing lungs.  As we have said for a week or so now, the rest is up to Shiloh and God.  This could be a week venture getting him weaned down to no flow if he all of a sudden just begins to pick it up and do wonderfully.  Of course, if he takes his usual path, we are probably looking at about 12 days to wean him down to nothing.  He has been taking an average of about 3 days to make a 1/2 liter drop in oxygen flow, so we 4 halves left, that would be 12 days.  In the end, we won't know until we get there.

In other news, he is doing well with his nipple feeding once a shift.  He is taking a full bottle (NICU sized) at each feeding, and he has little or no problem feeding.  So, in the next couple of days, the determination will be made as to whether we will begin feeding every other feed on nipple or every feed.  All of our ducks must be in a row to get every feeding by bottle.  Of course, the best news of all was that he got an extra nipple feed today. The day nurse snuck an extra nipple feed in so that Carrie could give him the bottle, and she could walk with us through some of the special circumstances of feeding a preemie.  But, Carrie did get to feed him and was very content in that.

We still have many hurdles to go, but we are constantly seeing progress.  We could very well be out of here by the end of the month.  To get there we have to get off of oxygen completely, get all feedings by either bottle or breast, gain weight without being force fed, maintain his body temperature, and pass the car seat test.  Some of these things he is already doing, but he has to pass their tests.

So here are our prayer requests:

1. His lungs would continue to develop and he would learn to thrive without the assistance of oxygen
2. He would graduate to all his feedings by bottle and breast
3. He would take to breastfeeding
4. He would continue to gain consistent weight now that he is off iv fluids
5. That he would continue to maintain his body temperature
6. Pass the car seat test
7. Move to the 3rd floor NICU
8. Finances
9. Safe Travel
10. Strength and Patience for Carrie and I
11. Shiloh would remain overall healthy and not catch anything that would hinder his progress
12. We could make a decision on him a doctor for when he is out

Again, Thank you all for your prayer and support.

Pics for your viewing pleasure

That's what we breathe

At least that's what we were told.  Tonight he is at 2.5 liters of oxygen at 21 percent.  We don't quite understand it, but the nurse said that is what we breathe.  He is still being nipple fed once a shift, and the only real problem we have seen today is he didn't want to wake up for his day shift feeding.  The staff isn't too concerned with that because he is new at feeding and he had just been awake and active for 2 hours this morning.  We are trying not to get our hopes up, but there were mentions of him going home soon today.  Overall it was a good day.

1. his lungs will continue to develop and he will be totally weaned from oxygen
2. he will continue to take to the feedings
3. safe travel
4. finances
5. that I will be able to try breastfeeding soon

Thank you all for your support

For your viewing pleasure:

Wired

Quite a day today.  It started off very exciting with a great care package we received in the mail and an anonymous gift on our windshield.  Carrie, however, got very down when we got to the NICU.  It appears at times as if we are digressing instead of progressing, and that is hard to handle, but as the day went on, things got better.

Today his pic line came out which is a big step in the right direction.  He has also been moved out of isolation into the general NICU which symbolizes he is not as sick as he used to be.  We visited with the Nurse Practitioner today and she was very helpful.  She explained the apnea was to be expected since they were finally reducing his oxygen flow.  She assured us this was something he would grow out of.  For now, they have put him on caffeince which she says will stimulate the breathing part of the brain and help the apnea.

One thing I do not believe they counted on was the fact that Carrie never had any caffeine the entire time she was pregnant.  So, in essence, this was his first dose of caffeine, and where it usually puts the baby to sleep, he seemed very wired.  The entire time we were in there tonight, he was awake.  When you add to the caffeine the new sights and sounds of general population, you have one alert little boy.  In fact, today he went from being the "He is so good.  He never fusses and is quiet!" baby to the "He never stops crying" baby.

Immediately when we got there this evening, he began crying.  Carrie tried to quiet him, but he remained fussy.  She then changed him and tried to calm him, but he never would sleep.  When her arms were tired, I took over and after 15 minutes and 3 attempts, he was finally asleep.  In all, he was awake for 1 hour and 20 minutes tonight, which is the longest we have ever seen.  The funny thing is we were beginning to worry today because he never cried, but that has been remedied.  And the crying is good because it will build his lungs more.  Overall a good day.

Our prayer requests:

1. Lungs would continue to grow and become stromger
2. Apnea would clear up
3. Be able to wean him on oxygen flow (they are supposed to try tomorrow)
4. He will calm down in his new surroundings
5. Carrie and I will hold up to this
6. Travel safety
7. Finances
8. Move up to 3rd floor

Thank you all for your prayers and support and we love you.

Scratch that last post

It was a rough day in the NICU today.  After getting such great news last night, we went to the hospital with high hopes which were immediately shot down.  Last night's nipple feeding put Shiloh into some respiratory distress so they have upped his oxygen back to 3 liters and stopped the nipple feeding.  He was also having some periods of apnea last night and this morning.  The doctor believes it is simply a matter of trying too much too fast.  He tried to make too many advances at once and that set off a chain of events. So for now we have taken 2 steps back.

We did, however, take one step forward.  He is completely free from iv fluids.  They are keeping the pic line in as a precaution, but they have upped his tube feedings to 45 ml every 3 hours.  This means he is getting 100% of his nutrition from actual feedings.  Also, he is now being seen by the Nurse Practioner which we were told means he isn't the sickest baby anymore.

Today we found out this may be a longer road than we have been thinking.  We also found out a little bit more about the process.  There are 2 levels of NICU, and once he has been weaned off of oxygen, he will move to the 3rd floor.  On the 3rd floor NICU, there are comfort rooms where the parents can stay with the child.  Once he moves to the 3rd floor, we will be more in charge of his day to day care if we are able to be there.  So, this step is very much anticipated.  I could be wrong, but from the way the staff talks, I do not see Shiloh coming home before the end of July.

Our prayer requests tonight:

1. Pray for his lungs to develop so he can be weaned off of oxygen
2. Pray his periods of apnea to clear up
3. Pray he can be moved to 3rd floor soon
4. Pray for our finances
5. Pray for our safety as we travel

Thank you for your prayers

Big step in the right direction

Just made a call to check on Shiloh before bed, and we have some great developments.  First, his oxygen is down by another 1/2 liter to 2.5 liters.  Lungs are getting stronger.  Also, the drop in oxygen need has allowed them to start nipple feeding once a shift.  So, now once in the day and once at night, he is being bottle fed, and they say he is taking to it wonderfully.  So, tomorrow there is a huge likelihood that Carrie will get to at least give him a bottle.  Lots of good things.  Keep praying.

So much excitement for something that holds poop!

Well, I am being told I must post and show people all the colorful (cute) diapers.  I got a call while I was at the office from a VERY excited Carrie telling me they had arrived.  So, without further ado, here is the diaper collection, cloth diapers:

The status of things

I know I haven't updated in a few days, but there really hasn't been much to tell.  Shiloh has tolerated the feedings very well and they have upped his amount to 30 cc every 3 hours.  He is getting fed 8 times a day.  His oxygen has been taken down from 4 liters to 3 liters and is at 27%.  He continues to make slow progress everyday.

Of course, this process is taking its toll on us.  I came home this afternoon and sat down "for a minute" before getting ready to come to the church for the afternoon and fell asleep.  When I did leave the house, Carrie was asleep.  The schedule itself isn't what is giving us the most problems.  Our real problem is the drive back and forth and the time in the hospital.  If you have never sat in a hospital with somebody, it is the most draining thing you can ever do.  When you compound that with him not being able to talk to us and no tv in the NICU, his room is the sleepiest place on earth.

That's not our only problem.  Shiloh isn't the only one eating 8 times a day.  Okay, we actually aren't eating 8 times a day, but it seems like it at times.  When every meal you eat is on the road, it is full of calories and salt.  You eat more calories than you think you are and you begin to retain water.  I think I have gained 10-15 pounds through all of this.  Carrie doesn't have to worry about gaining while breastfeeding, but we are quickly finding out that the quality of what she eats affects Shiloh.  If the food upsets her stomach or gives her gas, he will have the same problems.  So, we have decided to make a few changes.

First, except for some weekend nights or other special circumstances we will be coming home every night. By coming home, we are able to eat more meals at home, and we have decided that unless someone is taking us out to eat, we will only be eating food we prepare.  To accomplish this on the road, we have begun bringing a loaf of bread and peanut butter with us wherever we go along with some fruit and other snacks.  Our hope is to eat healthier for Shiloh, and to possibly be able to get back to losing weight while going through this.  This should better overall.

Our prayer requests:

1. Shiloh's lungs continue to develop and become stronger quickly so he may be weaned off of oxygen
2. Soon we will be able to bottle feed him and Carrie will be able to breastfeed
3. Safety as we travel
4. Finances for travel
5. Diet would remain healthier and aid both Shiloh and our personal health
6. I would be able to find creative ways to get exercise in in the midst of this.

Thank you all for your support.

Sometimes God says shut up

It is very easy to get downhearted and mad when dealing with NICU stuff.  It's very easy to start asking why me.  We were there this week, but God kinda said shut up.  As we went back in to see Shiloh last night, we had to wait outside the door with another couple.  Their baby had been born at 27 weeks and they had already been there 2 months, and they were expecting another full month.  Then, as we went to find dinner we crossed paths with a homeless man with nothing to eat and nowhere to stay.  Then today a baby was transported in from Hobbs, NM.  Everything we had been griping about seemed so small after that.

To top it off, today was a very good day.  Shiloh is wearing clothes.  We can hold him whenever we like.  His oxygen percent he is being given is down to 28% and he is saturating at 95.  I was just informed they have started feedings again.  There are only two real hurdles to come home, and he is making progress on both fronts.

We took our discharge class today that is designed to teach the parents of preemies the special information they need when the baby comes home.  One thing we were told is they want him only around people he will see on a daily basis (who live in our house) until at least 6-8 weeks after his original due date.  This unfortunately means, there can be no visits for a while from family and friends until the doctor has cleared him to be in public.  The rest of the class was cpr and first aid and general care.  Things seem to be moving along and we are starting to feel the excitement.

Our prayer requests are:

1. First and foremost that he will tolerate these feedings and be able to move on to bottle and breast
2. His lungs would continue to develop and he would graduate off of oxygen
3. Continue to reach the milestones needed to come home - particularly the car seat test
4. Our finances will hold up for the remaining time in
5. The house would be ready for his homecoming

Thanks for your support and here are some pics: