Look Ma, less wires!

Yes, it has been a good day in the NICU.  We are officially off of the high frequency vent and on the "big boy vent."  His blood gas looks normal on the new setup.  The room is less crowded and he was doing good this afternoon.  Also, they have started feeding him the milk Carrie has pumped through his feeding tube.  The atmosphere is a little better, and you can see things moving to the point where we will be able to hold him.  His bilirubin levels are down a bit, and now that he is being fed, they should come down a little quicker.  All of his other labs looked great, and he was a bit active this afternoon.  Yes, it was a good day.

Tomorrow, we will go to church and have our little shower there afterward.  Then, we will return to Odessa where the travel trailer we are borrowing should be waiting on us.  That should help us greatly.  Carrie has a new pump and it is taking some getting used to.  I am having to learn a new avenue of patience. ;)  We are hoping tomorrow is as good as today.

Our prayer requests:

1. Advances remain advances and we see more.
2. His lungs continue to develop and he stays good on this new ventilator
3. He begins to digest his food very quickly and has no problems
4. His bilirubin levels to return to normal
5. Moved out of isolation
6. Us to be able to hold him
7. Travel Trailer won't have any problems being delivered and set up without us there

Thank you all for your support.

UPDATE** 10:23 PM - Just got off the phone with NICU nurse.  He is tolerating food well, and he is doing good on the vent.  They may start weaning him more tonight!

Progress and Blessings

I know I missed last night's update, but there wasn't really anything to tell.  Everything went the same, and we went home for the evening to do laundry and sleep in our bed.

When we came back today, there was progress everywhere.  He had another heart scan today, and the technician could not find the PDA.  So, it appears as if the PDA has closed completely this week.  Also, the doctor (head of neonatology) told us his lung x-rays look good.  His lungs have improved.  As we left tonight, his ventilator pressure was 22 which is down quite a bit, and his oxygen percentage is at 32%.  Things are improving on a daily basis, and the doctor said he may be down to the regular ventilator in a few days.  One great thing for us is you can see him breathing now more than before.  At first all we could see was the movement of the machine, but now you can see the rhythmic rise and fall of his chest.  Carrie was excited today because they let her take his temperature.

Also today we have solved the lodging situation.  On Thursday I had called the Basin Baptist Network about lodging solutions.  The secretary was very helpful, and in the end, has offered us the use of her 5th wheel, which the hospital is going to allow us to connect in the parking lot free of charge.  This is a huge answer to prayer because Carrie will be able to stay with Shiloh and have the comforts of home.  We can cook meals rather than eating out all the time, and we will have a place to relax when we aren't in the NICU.

In the end, this had been a day of progress and blessings, but we still have our prayer requests:

1. Pray that advances remain and more advances come
2. Pray his lungs begin to develop rapidly 
3. Pray the jaundice continues to get better - they were able to remove one bililight today
4. Pray he gets well enough to be moved from isolation (don't really know why he is still there)
5. Pray we can hold him soon
6. Pray for safety during travel
7. Pray for our patience as we wait for August

Thank you all

Bedtime Story

Of all the things I imagined doing with Shiloh over the past 7 months, reading a bedtime story to him in the NICU before leaving for the night was not one of them.  It was however the best part of my day.  Not that the day was bad or that anything bad happened.  Overall, Shiloh is progressing nicely.  All of our advances have remained advances thus far.  The only caveat is his blood pressure which has been a little on the low side, but they gave him packed cells for his hematocrit levels today and his blood pressure perked up too.  So, all in all we have held our ground.  There weren't any spectacular advances to speak of today.  They did try to be more aggressive with the ventilator weaning and he tolerated it some.  At one point the vent was at 27, but they brought it back up to 29 for the night, but that is down from 32-33 yesterday.  His oxygen percentage is at 39% which is down fromaround 45% yesterday.  Small gains but gains nonetheless.  Tomorrow he will have a chest x-ray to look at his lungs.  Friday is the next heart scan.  Bilirubin is coming down so we may be out of the lights in the near future.  No huge gains, but we are making small steps, and we are thankful to God for each one.

Carrie's issues have seemed to all work themselves out.  I got my TDAP vaccine today, and it has kicked me in the teeth.  I felt so bad I wore a mask in with Shiloh tonight, but it is a necessary evil.  Tomorrow our free nights in the hospital are up and we need to get our plan in place.  I know this post is choppy, but the vaccine has me very sleepy.

The bedtime story was a time of normalcy for Carrie and I.  We actually got to do one of the things we want to do with Shiloh.  Even though the circumstances weren't perfect, it was a perfect moment, and we thank God for it.

Prayer Requests:

1. Advances to remain advances
2. His lungs would mature quickly and nicely
3. Chest x-ray will shows signs of progress
4. Heart scan will show the pda closing more
5. Jaundice will completely go away
6. Lodging for our nights we spend in Odessa

Thank you to all of your for sharing this time with us.

The Good News and the Bad News

Yeah, that is how the doctor started her talk with us today.  When that phrase comes out of a doctor's mouth your mind begins to spin.  It's like ahhh...what now?  In this case, the good and bad news were one in the same.  The good news is his only real problem is that he has underdeveloped lungs.  The bad news is he only has underdeveloped lungs.  Why is this bad news?  He is white and male.  Studies show that white males have the hardest time developing and progressing in the NICU.  African American females do the best.  Again, I have no control over that!  So, the good news is this is just lungs that need to develop, and the bad news is he will probably be here 6-8 weeks, but he will come home in a couple months.  She did say the PDA is closing on its own so there is no need for intervention that she sees.  Also, the infection levels are way down so we have this infection all but licked.  She also theorized that this infection was the cause of the preterm labor.  Carrie never knew it was there, but Shiloh did and he said, "Get me the heck out of here!"  Suppositories are being given for jaundice because his bilirubin was up a little again.  Also, his hematocrit levels were down, but that is because they are drawing blood constantly and his body can't keep up.  For today she was taking it easy on oxygen weaning (down to 45% from 50%), but if he does well all day today and tonight, she will be more aggressive tomorrow to see how far he has come.  Overall, another good day.
Carrie is doing better.  Still struggling with breastfeeding issues, but her feeling of sickness and temperature is gone.

Our prayer requests to add to the others:

1. The advances made this week stay advanced
2. The PDA continue to close
3. Jaundice to be eliminated
4. Shiloh to do well with the more aggressive weaning
5. Shiloh to be moved out of isolation
6. Be able to hold him
7. Carrie's breastfeeding issues would resolve themselves

We love you all and we thank you for your prayers

Prayers Answered and another very good day!

First, let me say I am sorry if I have offended any of our family and friends because we don't send messages or call nonstop anymore.  We are forced to turn off our cell phones while in the NICU, and it is simply easier to update this blog once for everyone to see rather than sending every update to 100 different people.

With that said, today was a very good day.  From start to finish, today has been good.  There have been a lot of good things happening in the last 24 hours.

1. His CRP levels were down and his CBC panel looked better which means the infection is being controlled fairly well.  He has been taken off 1-2 of the antibiotics.
2. The doctor didn't even order clotting factor draws today which suggests she has gotten it to the level she wanted
3. The oxygen percent he is being given has been taken down to the low 50's today from the high 70's yesterday.
4. His platelets looked better today
5. His oxygen saturation level wasn't consistently where I want to see it (97-100%), but it stayed above the threshhold set by the doctor
6. The jaundice is still present with a billirubin level of 8, but they are beginning suppositories to help him poop to bring it down.  Normally, they would push breastfeeding, but they can't in him for several reasons.  And for now, his blood flow is going to his brain so they are keeping his stomach empty and feeding by iv.  So, the suppository to poop will help bring those levels down.
7. His blood pressure is remaining stable on its own without medicine.
8. He is way more active today than we have seen him yet.
9. The best news of all..... The heart scan today showed that the PDA IS SMALLER....no medicine right now.  We are waiting for it close on its own.  This was exactly what we have been praying for.

It has been a great day for Shiloh.  The hospital has provided us a room for three nights.  We had some wonderful church members come and take us to lunch today.  We got a good nap.  We have worked out a schedule that alternates nights here in Odessa with nights back home.  So, next week we will spend 3 nights a week here and 4 nights a week at home, but we will still see Shiloh everyday.  We believe it is the most financially responsible thing for us to do.  It is also the best thing for Shiloh.  When we sit in there hours at a time, he begins to get overstimulated and his oxygen saturation falls off.  What we have begun to do is sit with him and talk to him until his oxygen saturation starts to be below 90-91% consistently.  At that point we leave the room for a while so he can rest and recover.  Overall, Carrie is very much more comfortable with this plan of attack than her being here alone or driving and back and forth everyday.

While it was a good day overall, there is a little negative.  This afternoon Carrie has begun to feel a little poorly.  She has had a little difficulty with breastfeeding, and she is now a little red, swollen, and tender.  Also, she got the TDAP vaccine on Saturday before leaving the hospital and those side effects are fever, aches, chills, etc.  So, right now we are watching her overnight to see if the swelling and redness goes away or if we need to take her to doctor for possible mastitis.  The symptoms are similar to the side effects of the vaccine.  She began running a very low grade temp of 99.7 this afternoon so she did not go in to see Shiloh this evening, and I wore full isolation dress including the mask when I visited to be extra cautious.

So that brings us to our prayer requests:

1. Pray that Shiloh continues to improve overall
2. Pray his lungs continue to develop steadily and begin to look better on x-ray
3. Pray the suppositories work and the Jaundice is wiped away
4. Pray that all the advances he has made thus far remain advanced
5. Pray that he can be weaned even more off of oxygen
6. Pray the PDA would continue to get smaller and close on its own
7. Pray that Carrie would feel better.  Pray this isn't mastitis.  
8. Pray for an even better day tomorrow.

We love you all and thank you for your love and prayers.

Today was a good day!

Yes it was!  So, let me preface all of this with the comment that each day in the NICU is its own day.  Today may be great and tomorrow may be not so great, but today was a GREAT DAY!

 Today we spent quite a while with Shiloh in his little isolation room.  We started the day very down because the news wasn't so good to start.  First, the infection numbers had gone up and they added a 4th antibiotic.  Second, they moved the brain scan up by a day because the night nurse had reported that he was too lethargic and a little stiff.  They wanted to make sure there isn't any damage.  Then, I waited in his room for 3 1/2 hours to talk to the doctor.  I needed answers.  So, the Doctor finally arrived and I had my chance to visit with her for the first time.

She said the same thing she had said twice before.  He is a sick little boy, but he isn't a sick little boy who is going to die.  She then discussed the statistics of babies in the NICU, and said unfortunately Shiloh is a Caucasian male and he is following the pattern of Caucasian males in NICU (They are the slowest to react and grow in the lung department)  She said African-American girls do best to which I responded, "Well, I really couldn't help that!"  I asked her about the upcoming brain scan, and she said she was moving it up just to be sure everything was okay and to know whether or not he was a candidate for the medication to close the PDA in his heart.  She said she didn't expect anything to come back because they were watching his soft spot and head circumference and there had been no change in them and no reason to be alarmed.  This scan is to be a precautionary thing overall.  She said his blood gas numbers are about the same and he just has a long road ahead, but it was a road he could travel.  Then she gave me a story of someone who did have a brain bleed, but was successful nonetheless as an adult.  That did wonders for my nerves.  *rolls eyes*  She said overall exactly what she had been saying.

I then took a break to get something to eat and make some phone calls while Carrie took her mom in to see Shiloh.  They were in there for about 15 minutes before they shooed them out to get some things done.  Then Carrie's mom went home and we went back in to see Shiloh, and then the day got good!

First, his clotting factors are better today.  They were around 35 and now it is down to 17.  Not where they want them, but a lot better than before.  Second, the doctor revised her parameters for blood pressure and has taken him off of the blood pressure medicine.  Third, he is feeling a lot better.  The nurse said she could tell how much better he was feeling from how much he was acting up.  He would grab tubes and lines and try to "help" the nurse do things.  At one point I placed my finger in his hand and he grabbed it and his oxygen saturation automatically went up to 100% and stayed there.  Carrie experienced the same thing shortly after I did.  So, it appears we may be getting ahead of the infection.  Finally, the brain scan came back as all clear.  There is no damage or bleeding to be found in his brain.  All of these things add up to a great day!

Tomorrow, we may have some setbacks because, after all, we have to test the waters before we can swim, but WE WILL SWIM!  Yes, today was a great day.

Now we have our prayer requests:

1. Pray the advances we made today would become permanent advances toward Shiloh coming home
2. Pray that the PDA in his heart would close overnight.  Yes, I am asking for a miracle, but if it closes, even a good bit, we won't have to resort to the medicine which can have some steep side effects.
3. Pray the white cell count and other infection signals would begin to decline in the blood work
4. Pray the jaundice would go away
5. Pray that he moves out of isolation quickly and that soon after can be held
6. Pray that his lungs begin to develop quickly
7. Pray that Carrie and I can make the right decision as to how to react in this time.  We want to be here, but we can't stand to be in that room all day not doing anything at all.  Carrie is torn between wanting to stay near Shiloh at all times and not wanting to stay in Odessa alone.  She is praying over whether she wants to stay here full time by herself or if she wants to split time between home and here and both of us spend 2-3 nights a week in Odessa.  Pray we can make this decision in the way that is the most financially responsible and good for Shiloh

Keep praying, and keep checking in for updates.

First Update (The first 2 days)

Well, the past 2 days have been a whirlwind and a rollercoaster.  Thursday night, as embarrassing as it is, Carrie thought she was dealing with a little constipation.  As the night went on however, her pain continued to increase, and by 3 am Friday we were texting the midwife.  After much discussion of kidney stones and other possibilities, it was decided we needed to go quickly to the hospital to get checked out.  I called our youth minister, Bobbi, at 4 and told her to pray.  She began waking most of the church to pray also.  I stopped at Stripes to get some gas and I took the word hurry very literally.  (kids don’t try this at home!)  I drove 95 all the way to Midland.  Now before you say that was stupid, let me say that if I hadn’t, I would have delivered Shiloh on 349 in the back of the van, and neither he or Carrie would have been here today.  We got to the hospital at 4:25 am.  Carrie was in Labor & Delivery by 4:30 am as I was sent to register her.  At 4:40 am, the phone rang in registration, and I was told I was needed up there now!  By 4:45 am Carrie was in active labor.  At 5:25 am on June 21, Shiloh Aaron Strickland was born.  He weighed 5 lb 1.5 oz and was 17 ¼ inches long.  We now know we were 34 weeks along rather than 32.  He was loud so we knew he was okay, but a slight mistake was made along the way and he wasn’t immediately given the surfactant needed to lubricate his lungs. Surfactant is a natural enzyme of our bodies that allows us to tranfer oxygen and carbon dioxide in the lungs. Babies naturally develop it somewhere around the 37-38 week mark. Later in the day he was transferred to Odessa NICU while Carrie had to stay in Midland.  Once we found out she wasn’t being released that night, Bobbi came and sat with Carrie while I went to check on Shiloh.  He was doing as well as could be expected. That first night and second morning were a little rough on him, but he’s holding his own. He has a few obstacles to overcome: 

• His Patent Ductus Arteriosus (PDA) is still wide open. The PDA is the "hole" in the heart that allows blood to go to the placenta to get oxygen rather than the baby's lungs while in utero. The PDA usually closes near the end of pregnancy (up to a little after 40 weeks). Being 34 weeks, his PDA is still open. Doctor isn't too concerned about this, and she is watching to see if it closes on its own (which it should).
• His incomplete white cell count is up which signals infection. He is on 3 broad spectrum antibiotics to fight infection. First, pregnant women are usually tested for strep b at 35-36 weeks and if they are positive, they are treated so the anitbodies will go into baby. Since we were only 34 weeks, and had been told 32, Carrie was never tested. As a precaution, the NICU policy is to automatically give such babies 2 broad spectrum antibiotics to cover the strains of strep b so they stay ahead of the infection if it is present. His incomplete white count being up is also normally expected in babies of his gestational age, and they added the 3rd anitbiotic to cover all of their bases.
• He is a little lethargic, but that is because a combination of infection and the fentanyl which is to sedate him enough that he won't fight the ventilator and cause major lung damage. Babies born earlier than Shiloh lack muscle mass in their lungs and will just chill and do what is needed when it comes to the ventilator. Babies like Shiloh, as it was explained to me, have muscle mass. While he does count on the ventilator to breath (or remind him to breath) he is not dependent in the sense that he can't breath. He can breath on his own, but his lungs are so underdeveloped and lack natural surfactant he overworks his lungs and wears himself out too easily, and then will quit breathing, thus the ventilator. The problem becomes his little muscles work against the ventilator because He wants to breath on his own. To remedy this, they have him on a sedative to keep him from fighting and causing lung damage.
• You can see his red hair today better. His hair is quickly starting to show some red. For those who knew me (Troy) as a child, there is some of that same color.
• His clotting factors in his blood are also off. I talked in length with the medical staff last night about this because this was the most concerning of all. Right now, the plan is to watch and wait. The leading theory is the clotting factor will fix itself once Shiloh expels all of Carrie's antibodies from his body. The thinking is his system is fighting her antibodies because they are different blood types. Carrie is O positive and Shiloh is A positive like me. So the NICU believes this will go away in the very near future.
• This evening a new rule has been put up for Shiloh in the NICU. There seems to be a 1 to 1 corelation between over stimulation and breathing episodes. Whenever he has too many loud noises or is touched too much, his oxygen saturation falls, his heartrate races, and his blood pressure goes up. So, for now, we will not be touching him too much, and we will be whispering in his room. He does fine if Carrie or I place our finger near his hand and he chooses to hold it, but other touching is very distressing to him right now.
• Doctor says everything is going good. Everything she sees in Shiloh is what she would expect to see in a baby of his gestational age. Her exact words twice have been, "He is a sick baby, but he is not a sick baby who is going to die. He is a sick baby who needs some time for his lungs to develop."
  
  

The past few days have been long and tiring, but we have felt the prayers going up for us and Shiloh all around the world.  Thanks to the visitors and all those who have been praying.  God is working through this situation in a mighty way.

• First, he provided dependable transportation for us just one day before we needed it.
• Second, the timing is miraculous. Just a little over 24 hours more and Carrie would have been in Abilene on her way to Garland, and I would not have made it on time. Just a little over 48 hours more, and Carrie would have been in Garland and I would have been in New Mexico and surely would not have made it.
• Lastly, Shiloh's name has been picked out since November. Shiloh Aaron literally means "God's promise of strength." How fitting in this time

If you want to know what you can do, here are our needs and prayer requests:

• Pray that Shiloh’s lungs develop quickly and normally
• Pray the clotting factor clears up
• Pray the pda in his heart naturally closes before time to come home
• Pray the NICU stays ahead of infection
• Pray that God will provide a way for Carrie to be able to stay most of the time in Odessa to be with Shiloh. - Motels are expensive and the hospital isn’t any cheaper
• Pray for travel to and from
• Pray for a quick growth and homecoming date
• Pray for Carrie’s recovery
• Pray for overall health for Carrie and myself
• Pray that when Shiloh does come home he is a perfectly healthy baby
• Most importantly, pray that God is glorified in this situation and that we have opportunities to minister in the midst

Keep checking here for updates on Shiloh and this journey. We will try to update daily.

The Worrier in Me

Of course with a title like that you had to know this would be a post from the male half of this relationship.  This is the point of the pregnancy that is equal parts excitement and worry.  I get excited and awed by the little moments of this journey.  Like when sit down at night and sing to Shiloh.  Each time I do, he begins to move and position his head to where he is closer to my voice.  And then there is that glow coming from Carrie that just melts my heart everytime I see her.  All of the plans that are coming together fill us with this sense of anticpation.  We are eagerly awaiting that day when we hold him in our arms.

Then there is the equal part of worry.  That sometimes impending feeling of doom.  It has more to do with all of the hard times I have gone through in my life than anything else, but every once in a while, it sneaks in.  We chose not to do the blood screening for genetic abnormaltities because it wouldn't change the outcome if we did.  Maybe that was bad for me because I will wonder until the day he comes out, but I know even in the worst circumstances I will love this boy.

Right now my biggest battle is with the worrier in me.  That has always been my job.  I was the one in the family the worry fell on.  I was the one with the answers.  In this situation, sometimes in kicks in in overdrive. So I battle as I wait, praying and claiming the promises we feel God has given us, a healthy baby as our inheritance.  A precious trust to raise in the ways of God.

So pray with me.  Pray that God will cradle my little boy in His hands until he is complete, and even as he takes his first breath of the air in this world.  Pray that everything from Shiloh to his delivery will be normal and perfect.  Pray for peace in my heart as I battle my alter-ego.  Pray that God will be evident in the 2 months to come as we try to patiently wait for Shiloh's arrival.