April 11th: JoAnn wasn't feeling well.  A friend of ours recommended that she go see her doctor for an early checkup.  He sent her to the hospital since she was dilated to three already.  From there, she called me then was ambulanced up to a hospital in Milwaukee.  Pastor Mark offered to drive me up and spend some time with us.  Both of us were rather shook up.

About 15-20 minutes later, at 8:32 AM Ashley Noelle Wester was born into this world. JoAnn was rushed in for an emergency C-section. The first hours of Ashley's life were very tough ones.  The doctors struggled to find a heartbeat for 8 minutes. They seemed to think that her heart was beating, but the blood pressure was very low.

Her low blood pressure was a major concern for several days.  We knew her life was in serious danger, but we didn't find out until later that some of the nurses went home that night never expecting Ashley to make it through the night.

Because of her activity, the nurses have nicknamed her "Acrobatic Ashley." For a while they tried keeping some plastic wrap over her body for warmth and humidity, but she kept pulling it up to get her hand up by her mouth.

This time, the doctor gave us a little more indication of problems that Ashley might face.  She is at high risk of suffering damage to her brain.  She has a 50% chance of Cerebral Palsy and a chance of mental retardation.  Because her blood pressure was so low at birth, there is a chance of part of her small intestine dying due to lack of oxygen supply.  She also has some dead skin on her left shin that has died due to the same lack of oxygen.  This should recover, but leave a scar.  The most critical areas are her brain and internal organs.

The doctor did offer us the option of disconnecting the machinery from Ashley and end her struggle. This never was and option for us. God had answered a prayer of giving us a child.  I thought of the parable of the three servants who were put in charge of their master's money for a time.  The master expected to see a return on his investment no matter how much or little he gave them.  One servant decided to hide the money given to him by burying it in the ground.  The master was not pleased with this servant.  Well, this was one "investment" God gave me that I have no intention of burying it in the ground.

1. After being on a high-frequency respirator for almost a week, she was moved to a normal respirator.  This indicates that her blood pressure, heart beat, lungs where all performing well enough to move to a new machine.
2. Her home for the first 6 days of life was an open air incubator with overhead heat.  This allowed easy access for doctors and nurses to work on her if her condition became critical.  She was moved to an isolette (a plastic bubble with arm holes to reach in - like the ones on TV).  This indicates that she is stable enough that they don't fear her condition changing for the worse.  This also allows for some noise and light reduction which keeps her more calm.  Also during this move, JoAnn was allowed to hold her for a half hour.  This normally would only last 10 minutes, but the nurses were impressed how well she handled it!  When they started moving her into the isolette, several nurses stopped by to watch and comment how amazed they were to see her turn around has been in the last couple days!  
3. Since birth, Ashley has had a mild infection.  This really only bothered her while ingesting food. She has been fed by an IV and she was not handling the fat in her IV food well.  Suddenly, she has been able to start ingesting more fat and protein in her food as the infection is dying off.
4. While moving Ashley, they decided to weigh her.  She started off at 1lb, 4 oz or 565 grams.  They told us to expect her to lose weight; possibly even dropping under 1lb. She weighed out at 1lb, 4.8 oz. Holding her own weight and then some!
5. Later in the evening, after being on the new respirator for about 12 hours, they starting turning down the breaths per minute because she was doing so well!  They were amazed that she handled the change of respirators so well.  They were giving her 50 breaths per minute, but turned that down to 30.  Once that was done, Ashley started breathing on her own, assisted by the respirator.  As soon as she starts a breath, the machine gives her one. Then the same for exhales.  That way she breathes, but the machine does the work.  For safety, the machine will automatically give a breath if she doesn't breath for 2 seconds.  I've never seen that happen, as her BPM have stayed around 40-50; right where they should be!

In light of all of these improvements, her doctor said that is showed very good promise for her brain.  There could definitely be some problems yet, but these are VERY good signs for it.  Only God could have done it.  I have a new nickname for her: My little Miracle.

The also detected the PDA flap in her aorta had opened up.  In the womb, this flap keeps the blood from going to the lungs, since she wasn't breathing anyway.  This is normal in all babies.  However after birth, this flap normally closes and directs blood to the lungs.  In preemies this can open back up.  They gave her some medication to make this close.  If this doesn't close in 48 hours, they will have to do surgery to stitch it close.

Please pray that God may heal her PDA flap, so that she won't need surgery.

Since Sinai didn't have the medical staff to do the anesthetic, Ashley was moved to St. Joseph's hospital for the surgery.  She will probably go back to Sinai Sunday or Monday after the surgery.  The surgery itself is rather simple, but any surgery on a little body like this is pretty tough.  When she arrived at St. Joseph's, they did weigh her and she weighed 740 grams or 1lb 10oz. She has been putting on some weight.  Answered Prayer! It is hard to imagine that she was smaller than her current weight!  She is still so tiny.

Oh yeah, the surgery! Well she did very well during the surgery.  It only lasted 20 minutes, while they normally take about 45 minutes. There were no complications and she seemed to handle it very well. Answered Prayer! Her oxygen needs haven't really improved a whole lot, but they said it might take a few days.

Also, she seems to be doing a little better on her vent settings and oxygen requirements.  Answered Prayer! Tomorrow they are planning on starting her food back up.  She must be hungry after not eating for 4 days! Of course she was getting IV food, but after starting up her stomach, I would think she would have some hunger pains.

I almost forgot!  Ashley's leg has healed incredibly! Answered Prayer! When she was first born, they were concerned that about permanent damage on the skin and maybe worse.  We saw her leg today and you can hardly tell!  She has a small scab on her knee and you can tell the skin on her leg is new and delicate, but it is SUCH a big improvement, her doctor was AMAZED, in awe even about how much it healed.

After the surgery, they started working on her feedings.  They started her way back at 1mL every 3 hours again.  But today that bumped her up to 15mL (1/2 ounce) every three hours.  And she hasn't shown the slightest problem with her feedings! Answered Prayer!

With eating all that food, her weight has been increasing, too.  After the surgery, she was able to purge some fluid that she was holding on to.  So it looked like she didn't gain as much as she should have, but we know that it is now her own weight.  They weighed her today at 815 grams (1lb, 13oz).  Keep putting on the weight little one. Answered Prayer! 

Also after the surgery, her oxygen intake was fluctuating quite a bit.  One minute she wouldn't need much, then need to be bumped up to 100% oxygen.  Last weekend, they started her on steroids for her lungs and that seemed to help almost immediately.  Her oxygen needs have decreased steadily and is much more stable now. Answered Prayer!

So far everything has been going well with Ashley except one thing.  She is eating well, pooping well, breathing well...., but she has a mysterious increase in her heart rate.  Friday night to Saturday, she had a fever (about 100 degrees) and her heart rate was rather high (200 BPM while 160-180 is normal for her).  They put her on antibiotics thinking she may have had an infection, but her blood tests have come back negative.  They have tried a few things that worked with varying degrees of success.  Her temperature is down around normal, but her heart rate was still pretty high this morning.  The doctors decided to stop her feedings for at least a day to see if she might have been having some bowel difficulty.  They had no signs of problems (milk goes in, then comes out), but it is very common with babies like Ashley to have stomach problems.  So they want to see if it might help her to get her intestines cleaned out before continuing the feedings.  Back on IV fluids and she just got all those things out of her arms. 

Also she is up to 1lb 14oz.  We are hoping that she might make 2lbs this week.  That might be difficult, however, on IV fluids. :( 

Since she continued to have bowel movements and good stomach sounds, they also decided to re-continue her feedings.  At least it didn't last too long this time.  Answered Prayer!

Ashley also had her brain ultrasound today.  We didn't find out too much information, but it sounded like it really hasn't changed too much.  Not worse, not better.  Just needs more time to dissolve.

But the best is news is that she was weighed today and we hit the 2lb mark!  Ok, 2 grams short of 2 lbs, but its close enough for me! Answered Prayer!  

Ashley did have a head ultrasound this week.  It seems that the blood clot in her head has been progressing pretty slowly.  I guess this is normal thing, but it sure seems slow.  Thankfully, however, it isn't getting worse, so the doctors are pleased.

The weight keeps going up.  When I look at her, I can tell she is getting bigger, just not fatter.  We found out that she has grown over 2 inches in the last 7 weeks.  I guess that would explain it. ;)  We can also see her head and other body parts getting bigger. Now she has to start taking after daddy and pudging up a bit. ;)

We had Bob and Hannah and kids come visit us (well, to see Ashley anyway ;) and Ashley seemed kind of fidgety, but she hadn't eaten yet so that's normal.  I went to talk to Bob and the kids while Hannah and JoAnn were talking by Ashley in the nursery.  I guess Ashley got tired of that air tube down her throat, so she pulled it out.  Not to worry, though because the nurses were right on it.  Answered Prayer! Hannah said that Ashley was starting to turn purple before the nurses could put a breathing mask on her face, but I think the whole experience was harder on Hannah than Ashley.  I think they gave Hannah some oxygen afterwards, too. :) (Sorry Hannah, I got to tell the story). They warned JoAnn and I that this WILL happen sometime as she grows stronger.  Hannah was just getting used to seeing how small she is when all this happened (not to mention the fire alarm). No Hannah that was not a normal day at the hospital. 

Well, since she had pulled the tube out, they decided to leave her off the intubated ventilator (tube down the throat) and go to CPAP (continuous positive airway pressure).  All that means is she has a little thing on the end of her nose keeping her lungs pressurized with oxygen. Check out the new pictures!  This is much less invasive than the other ventilator and the next step towards being off oxygen all together.  Answered Prayer!  Plus her vocal chords are free now, so we can hear her make sounds.  No crying yet, though.  I think hearing her cry for the first time is going to be very special.  After that it will get old, but the first will be neat. ;)  It is possible that she will tire on CPAP, since she is doing a lot of the breathing, but we pray that she will be able to stay on it.

Also, I got to talk to Ashley's doctor quite a bit about the head ultrasounds she has been having.  All we have heard for the last couple of weeks is "No Change." But that wasn't good enough for me. (Nurse Sandy would heartily agree with that).  I actually got to see one of her first head ultrasounds and last Monday's ultrasound.  It was really cool to see the improvement.  First off, when they said "No Change," they were mostly concerned about the size of her ventricles (normal spaces in the brain). When she had the bleed at birth, the blood clot that formed caused these spaces to grow larger.  This swelling hasn't come down at all in the last couple weeks, but this is pretty normal for the time being.  What they didn't mention, was that for the last couple weeks the blood clot has been dissolving and several holes are now visible in the clot.  Answered Prayer!  It is also much smaller than it was after her birth.  Also, the ventricle on the left side of her brain came down quite a bit from birth and is almost back to normal.  Answered Prayer!  The right side is about the same size as it was at the first ultrasound.  They always said that the Westers weren't in their right mind anyway.  Somewhere out in left field.  ;)

Well, I hope that doesn't give you a blood clot from thinking about all that, but it all boils down to this: God is healing my little girl.  Everyday she grows stronger and more independent. Even when we can't see visible results, God is at work.

But one thing Ashley's doctor is pleased with is her weight gain in the last week.  I wrote June 5th that she passed the 2 pound mark.  Well, one week later, she had gained 7 more ounces! Yes, an ounce a day.  She has REALLY been in a growth spurt lately.  It seems like every time we go up to Milwaukee, she looks bigger.  As of Tuesday, she was up to 2lbs, 12.5 ounces or 1265 grams!  700 grams over her birth weight!  Part of that is some blood that she got earlier that day, but still, she has been growing like a weed! Answered Prayer!  They sometimes worry about her head when she is growing so fast, but there hasn't been any pressure build up at all in her head. Answered Prayer!

Ashley has done well with CPAP, but JoAnn and I were a little disappointed last weekend.  Two of the three times we held her (including my time on Father's Day), Ashley has tired out after an hour and we had to put her back in the isolette.  We knew she was getting her lungs stronger, but because of the extra work of breathing on CPAP, she tired out much quicker.  It was hard not being able to hold her as much, especially while not being able to see her everyday. So we went home a little depressed last weekend.

But......we had the most INCREDIBLE time this weekend.  Rather than the kangaroo kare (holding her skin-to-skin on our chest) we tried holding her in her blankets in our arms.  We were rewarded by having a about 15 minutes of alert time where Ashley looked around, looked at us, just showed us those beautiful dark eyes of hers.

The only bad part of holding her Friday night was the realization that she needed a bath pretty badly.  I've heard of people liking that newborn smell, but you can have it. ;)  So on Saturday, JoAnn gave Ashley a bath.  It was her third bath, but the first that we got to be there for.  Mommy washed and Daddy videotaped.  It was really a wonderful time.  She was VERY alert looking around at people.  Very calm, she really seemed to enjoy it.  Maybe her nose is working well. ;) JoAnn was in 7th Heaven, I think.  When they gave her the bath, her nurses took all of her monitors off (heart, breathing, blood oxygen level).  They even took off the CPAP respirator and used a little breathing mask to just blow oxygen at her face.  After the bath (about 15 minutes off her respirator), the reconnected everything and found her oxygen had remained at 97% (where 90-100% is normal).  The nurses (and we) were VERY pleased to see her do so well off the CPAP for so long.  She just seemed so peaceful.

My sister, brother-in-law and their three kids came down to see Ashley for the first time, too. (They live 7 hours away) They really picked a good weekend to come. They were really please to be able to help me change her diaper and help out with the bath.  They are the first people to touch her besides her doctors, nurses, and us.

Also, last time I mentioned that her oxygen was rather high lately.  Well she was on 70% Wednesday and Friday/Saturday was on 28-31% oxygen.  What an answer to prayer!

But it doesn't end there! (I feel like a commercial selling Ginsu knives or something) Sunday afternoon, the nurse called to tell us that they took Ashley off of the CPAP and put her on Nasal Cannula. That is the normal oxygen tube you've seen people have in the hospital.  It doesn't help her breathe at all, but just blows oxygen at her.  It is much more comfortable than the CPAP. She wasn't even requiring much oxygen at the time.  They don't measure in percentage anymore, but in liters per minute (lpm).  They said she was on 0.15 lpm of oxygen at the time, which really isn't much at all.  The nurse said she had been on it for a little while and doing really well.  She was resting comfortably, happy the CPAP was gone. 

Answered Prayer! Answered Prayer!  Normally put in several red "Answered Prayer" labels in each update, but I would have to put it behind every sentence!  This past week, God has REALLY answered our prayers.  Thank you for joining in with us in prayer for Ashley. Answered Prayer! Answered Prayer!

Ashley has had a few ups and downs.  It started with her not doing real great on the nasal cannula.  Her oxygen needs kept going up.  They then discovered that her nose was swollen a little from so much oxygen being blown in.  It dried up a little and got irritated.  So they moved her feeding tube to her mouth and took her off nasal cannula.  They had her on a oxygen hood for a couple days.  This kept the oxygen content around her head and shoulders up so she could breath.  It was neat to see her without any breathing tubes on her face and she could move her head more freely.  We've seen her pick up her head and turn it to the other direction a couple times now.  But the downside was that it was much harder to hold her.  We had to use a "face mask" to blow oxygen at her face.  It would work for a little while, but we would have to put her back after 30-45 minutes.  :(  A couple days ago, she did go back on the nasal cannula and has been doing well since.  Answered Prayer!

Part of the reason of her doing better is that they started her steroids again.  This really helps the development of her lungs, but hinders the rest of her growth, so they don't like giving it to her that much.  The doctors are suspecting that her adrenal glands may not be functioning, yet.  He said that they will eventually kick in, but they will keep her on a small dose of steroids until they do.  That may be as long as a month.  He said the dose was so small that it shouldn't harm her growth.

This past Thursday, we had a bit of a scare.  I got paged at work with an "URGENT" page and a phone number.  I called the number and it was the office of an eye doctor.  He had checked Ashley's eyes earlier and was recommending laser eye surgery that night!  Ashley has a condition called ROP (Retinopathy of Pre-maturity).  It has to due with abnormal growth of blood vessels in the retina (back of the eye).  The blood vessels try to grow too fast and end up cork-screwing.  So they dilate her eyes and use the laser to damage the retina in an area that she will never use.  That forces the eye to stop (or slow down) the growth of these blood vessels to heal the damaged tissue.  This is common in many premature babies like Ashley.  So Thursday night she had the laser surgery on her left eye.  And she did very well.  Answered Prayer!  She was uncomfortable afterwards, but pretty quiet.  She also did very well on her oxygen during the surgery.  They mentioned that she might have to go back to CPAP or back to the tube down her throat for a little while if she did not do well.  There is a good chance that she will need laser surgery on her right eye on Monday, but we are not sure.  By then, her left eye should have healed fairly well.  The doctor has told us that there is a 99.9% chance that she will need glasses.  Not a big surprise, but we were hopeful that she wouldn't need them.  He said that most babies as premature as her need them anyway, but the ROP nearly insures it.  We knew of this possibility, but it still was a scare.

On a more positive note, her weight gain has been doing well lately.  Answered Prayer! We had one day where she dropped in weight and another where she didn't lose or gain any weight.  She had a couple days in a row where she hadn't pooped.  On Tuesday night, JoAnn and I were up there and she had two HUGE diapers.  The first was mine (lucky me).  It weighed almost 1.5 ounces.  She was weighed after that diaper and lost about 2 ounces of weight (surprise, surprise).  Then JoAnn changed the next one and it was even bigger.  The nurse told us that she had two "out-of-diaper" experiences with Ashley the next day before her weighing in.  So I figure she was doing pretty good just holding her weight.  Since then, she has gained that weight back plus some.  Either tomorrow or the next day she should be big enough to go to a crib and out of the isolette! Answered Prayer!

JoAnn and I are doing OK.  The drive to and from the hospital has started weighing heavily on us, but we trudge on.  The reality of Ashley coming home soon has really started to hit home.  Its amazing to see babies in the NICU that are actually smaller than her now.  Next thing to work on is feeding.  Its exciting to think about her taking food orally and not through that stupid tube anymore.  She has been sucking pretty well on her pacifier lately, so it will be interesting to see how she does.  If she takes after daddy, she'll have it figured out in a couple days. ;)

And...... since she is in a crib, she hit 4 pounds!  Answered Prayer!  Monday night she hit it on the nose. And she's grown so much we have been picking out the smallest outfits people have given us for her to wear.  There was a "one-sie" that someone gave us last Sunday that will soon be too small!  It is a weird feeling to see her grow out of something.  Plus now there are smaller babies in the nursery.  I'm so used to looking at the other babies and them looking so large.  Now Ashley is bigger than some!  

Also, we mentioned that Ashley might have eye surgery Monday.  So far, it has been held off.  They examined both eyes and the left eye looks pretty good after her surgery.  Answered Prayer!  She has started to open it back up, after being swollen shut for a couple days.  Her right eye isn't as bad right now, but the doctor thinks that she will eventually have surgery on that one, too.

Wow! While I was writing this, one of Ashley's nurses called to give us an update.  Ashley took 5 mL of milk through a bottle nipple today.  Answered Prayer!  Her occupational therapist wanted to see how well she would do and she did great!  She thinks that by next week, she should be able to start some bottle feedings!

I've written about a little boy next to Ashley that was born two weeks ago. He was born about the same gestational age that Ashley was (~24 weeks) and just a little lighter than Ashley (1lb 3oz).  It was so neat to see him and see how far Ashley has come.  He was doing so much better than Ashley at that age.  He had a much better start and was weeks ahead of her.  Saturday night, just hours after JoAnn and I left the hospital, that little boy died from an infection.  They only discovered the infection hours before.

That really shook me.  He was doing so well, better than Ashley at that point.  Taken in just hours. How close did Ashley come to that point? Were your prayers the only difference between this boy and Ashley?  I guess I wonder if that should have been Ashley's fate instead of this boy's.  The more I learn about preemie births, the more I see how she should not have lived.  There is a test that all babies go through when born. The doctors rank the child's condition from 0-10.  0 to 2 points are assessed for Activity, Pulse, Grimace (Reflex irritability), Appearance (Skin Color), and Respiration (APGAR).   They assess this at birth, 5 minutes and 10 minutes.  Normal babies rank from 7 to 10.   Ashley rated 0, 0, and 3.  This little boy came out crying.  He was able to skip several steps of life support that Ashley needed. Never more have I felt less worthy to be blessed with her life. Never more have I been more thankful for her life.  Answered Prayer!

Ashley did hit 5 pounds this week. She is now over 4 times her birth weight. Answered Prayer! She is taking 3-4 bottles per day. Answered Prayer! When she hits 8 feedings (all of them) she gets to come home.  :)  She may be ready, but I'm not sure JoAnn and I are. ;)