This page is a journal of the trials and tribulations all three of us endured while Ashley was in the hospital. I hope that by reading this page you may see God's hand at work healing our little girl. To Him be the glory.
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.
JoAnn had to remain in a hospital bed with her feet up and her head down. Doctors weren't sure if she would go into labor soon or be able to hold out. Since she was only 23.5 weeks along (out of 40 weeks) in the pregnancy, every day they could add would help.
|April 13th: JoAnn's water broke around 8:30 AM. Since there weren't any contractions, there was no change in medication. Just a more likely chance that she could go into labor and go fast.|
|April 21st: After laying in bed for a week
and a half, JoAnn started feeling contractions at 7:00 AM Thursday
morning. She had some mild contractions before, but this seemed
different. The nurses put the monitor on her to check out the
contractions. A little after 8:00 AM, a doctor checked to see how
far JoAnn was dilated. Not only did she figure JoAnn was dilated to
9 or 10, but she felt the umbilical cord as well. This is a bad
thing for a baby in the breech position.
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.
It is a difficult was to see a prayer answered, but we did pray for children and God provided one. Answered Prayer! Also, JoAnn did hold out for a week and a half before giving birth. Ashley's chances of survival rose from 33-50% up to 75-90%! Answered Prayer!
|April 22nd: Even though she made it through the
night, keeping her blood pressure constant was a major concern.
Saturday morning, they performed an ultrasound on her brain to see if it
had sustained major damage (indicated by the fluctuating blood pressure).
She was diagnosed as having a minor grade 3 bleed in the brain.
Bleeds are common in premature babies, but a grade 3 was getting into the
serious area. This could effect her chances of survival and
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.
|April 25th: By this time Ashley has stabilized
fairly well. She has survived past the first three days that the
doctors didn't think she would. She is off all blood pressure
medication. Her heart and lungs have been working very well for
their premature age. And the doctors did another ultrasound on her
brain again. Again she was diagnosed with a mild grade 3 bleed.
Not getting better, but not getting worse. She has started
urinating, indicating that her kidneys are working!
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.
This was a very hard day. Probably the worst so far for JoAnn and I. But yet, Ashley's blood pressure has stabilized and her kidneys started working. Answered Prayer!
|April 27th: What a change! Answered
Just two days
earlier, we were wondering if she could survive and if she did, how
severely handicapped would she be. Now both doctors and nurses are
amazed to see how Ashley recovered. Seeing the healing touch of my
God, Jehovah Rophe (Exodus 15:26: God who heals), was both humbling and awe inspiring.
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.
|April 30th: Wow! Ashley started drinking milk today! Answered
Prayer! They had told us that they would probably wait another week
before they started drinking milk. But when we had got to the hospital
this afternoon, she had already drank her first 1mL of milk (about 1/4 of
a teaspoon). This is done by putting the milk in a syringe connected
to the tube to her belly and letting gravity do the work. They want to see
how well she reacts to the feeding and start her stomach and intestines
digesting. She did very well on this for the days we were there.
Every drop was digested and there seemed to be no problems from the food
at all! Plus, she has started having bowel movements. Answered
Prayer! She has passed twice in the last two days; both times being
the black tar-like substance babies have after they were born. I had
the "pleasure" of cleaning up after one of these times. What a
mess!!! I think it took me a half-hour to clean it all up!
|May 2nd: Ashley had her head ultrasound today. The news was
pretty good, as the blood has started to recede some. Answered
Prayer! The doctors
were glad to see the blood to go down some and said it would be a slow
process before it was all gone.
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.
|May 4th: Well, the medication did work and her PDA flap did
Prayer! The doctors did say that if it did open up again (it may take 2-3 weeks to
heal shut), they would have to operate.
|May 5th: Happy 2 Week Birthday Ashley. Ashley weighed 650 grams
Because they weighed her, I got to hold her for 45 minutes.
She felt so light it was like she wasn't even there! She did really
well for the time, too. No fussing or problems at all. Just
|May 7th: Then on Saturday, they increased the milk she was
drinking from 1mL to 2mL
every 4 hours (That would be 1 teaspoon up to 2 teaspoons per day). She did so well digesting her milk, that they increased her on Sunday to 3 mL every 4 hours! Hey and were not finished. Today they decided to increase her feedings, so she is currently eating 3 mL every 3 hours! Answered Prayer! They also weighed her today. She dropped down to 630 grams (1lb, 6oz), but she was retaining some water the last time they weighed her.
Warning, this paragraph contains potty language. But it is important to parents. She started pooping on her own. Up to this point they were giving her some glycerin to help her push it out, but since yesterday, she has pooped 4 times without any help. Answered Prayer! I'm so proud! ;) As for the poopy diaper count, I've changed two poopy diapers and JoAnn has zero! I don't know how she misses them.
Also, our doctor has allowed us to go ahead with Kangaroo Kare. This is were we wear a special gown to wrap Ashley in and hold her skin-to-skin. This helps calm her and help her develop. They say that babies eat and sleep much better after a Kangaroo Kare holding session. JoAnn got to take the first turn today. Now since she is more stable, we can do one Kangaroo Kare session everyday. These sessions can last for 1-2 hours depending on how Ashley responds.
|May 11th: Wow, so much for going slow! Since they have
started feeding Ashley, she has not had one bad reaction (not digesting,
extended bowel, ...) to the food. So her doctor decided to start
increasing her feedings. And she meant it. After one week at
1mL every 4 hours, we have moved up to 6mL every three hours since
Saturday! That is 4mL per day up to 48mL (almost 1/4 cup) per
day. Since she is eating so much milk, they have cut her IV fluids
down to almost nothing. Due to the fact that she is pooping
regularly and eating so much without problems, the doctor is much less
concerned about her small intestines! Answered
|May 14th: There was some concern that Ashley might have an
infection in the lungs, so they put her on antibiotics last
Friday. As it turned out, she didn't have an infection, but it
looks like the PDA flap in her aorta has opened back up again. The
result of the flap being open is more liquid builds up in her lungs,
making it hard to breath. They started her on a medication that
might close it, but if it doesn't work, they might do surgery to close
the flap. Due to the medication, they had to stop her feedings for
a day or two.
Please pray that God may heal her PDA flap, so that she won't need surgery.
|May 16th: Well, we have been up for a while now, so I
guess it is time for a down
period in the roller coaster ride.
This weekend, Ashley's PDA opened up again. This is the artery that connects the pulmonary artery (to the lungs) to the aorta. Due to her infection, the doctors thought it would be wise to run another course of medication to try to close it again. If she hadn't had the infection, they probably would have done surgery. Her last dose of this medication was today and it sounds like the PDA has closed. She will have a heart echo later today to see if it really did close. If it didn't close or will re-open in the future, they will be forced to have surgery. The actual surgery itself is really a minor surgery, but we are more concerned how the stress, anesthetic, possible infections, etc.... will effect her.
Also today, she had her head ultrasound. This was looking at the brain bleed she had at birth. The blood clot has been dissolving, but it looks like the ventricles are swelling a little bit due to the clot blocking the normal drainage in the brain to the spinal cord. If she continues her present course, there is a good chance that she will be fine. It is possible, however that the clot could leave scar tissue in the brain or that the fluid build-up will need to be relieved by a spinal tap.
On a more positive note, the infection that they thought she had this weekend was not an infection at all. All blood cultures came back negative, so they figured what seemed to be bothering her must have been the fluid buildup in her lungs from the PDA. Answered Prayer! Interesting enough, it was that reason that surgery wasn't considered but give her more of the medication to close the artery instead. Also, since she is off of that medication now, they are starting her milk feedings back up again. Answered Prayer! She will start at 2mL every 3 hours and go up from there. This time they won't need to go as slow as last time.
|May 18th: Well, Ashley did have surgery today. The
PDA did not close with the last dose of medication, so they went ahead
with the surgery. We were hopeful that it wouldn't come to this,
but we thought it might come. Ashley's oxygen needs had been
getting worse over the last couple days, so this should
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.
|May 21st: Yahoo! Ashley was stable enough to transport her back
to Sinai. Answered
Prayer! It was nice to get back where we felt more
comfortable. We know the nurses and everyone at Sinai a little
better, so it makes it easier to handle everything that is going
on. If you didn't know better you would think a couple of her
nurses were Ashley's mother. We had many nurses welcome us
back. Nurses we didn't really know even. It was nice to know
they were keeping track of us while we were gone.
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.
|May 31st: There hasn't been too much to write about
lately, but that is a good thing. She has been pretty quiet
lately. So she must be giving us a rest before the next round. :)
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!
|June 4th: Last night we stayed overnight at the
hospital. They have two parent rooms in the NICU that they allow
parents to sleep overnight for free. Since we live an hour away
from the hospital we normally stay there one or two nights a week. It
makes it really nice to be able to wake up in the morning and walk over
and see Ashley right away. Other parents use these rooms when they are
closer to taking their child home. One of Ashley's neighbors had
his parents sleep over last night and he got to stay in the room with
them. I wonder how much sleep they got. ;)
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. :(
|June 5th: Well you must have prayed hard for Ashley last night.
The doctors decided that some bacteria in her respiration tube was
causing the increased heart rate and temperature. They put her on
some antibiotics last Friday and it seems to have worked after a couple
days. Her heart rate is back down to the 170s. Answered
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!
|June 13th: You know what they say. No news is good
news! And there hasn't been much to tell lately. But that is
a good thing.
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. ;)
|June 15th: I guess I should have waited a day for some
excitement. Wednesday, June 14th, JoAnn and I spent most of the
day at the hospital. Luckily my job is flexible enough to let me
work a few hours at the hospital and make up the rest the other 4 days
of the week.
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.
|June 22nd: Wow, what a week! After Ashley decided
she didn't want the tube down her throat anymore, we were just hoping
that she was strong enough to stay on CPAP (Continuous Positive Airway
Pressure). She has done pretty good on it so far. Answered
Prayer! She has been up and down a
bit on some aspects of her breathing, but she has done well. One
concern still resides, as her oxygen levels remain pretty high.
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!
|June 24th: Praise the Lord! There is only one
reason why Ashley has done SO well. The healing hand of God.
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!
|July 4th: More good news to report. Last Friday
Ashley jumped up over 3 pounds! Answered
Tonight she was 3 pounds 3 oz! She keeps growing and growing.
She has finally started to fill out a bit, too. Chubby cheeks,
belly, arms and legs. She is still in her isolette, but with her
weight gain, she doesn't need much heat to keep her warm, anymore. Answered
Prayer! The isolette is on the lowest setting.
She needs to hit 1800 grams (just under 4 pounds) to move out of her
isolette and into a little crib.
Also cool! I got to give her a bath last Saturday. I have to admit that I was a little nervous. You have to hold her in the water with one hand and wash her with the other. But she wiggles so much I thought for sure I would drop her. But I didn't. ;) Again she did really well during the bath. She sure seems to enjoy getting washed up. By the time I got her clean (ok, I admit I forgot behind the ears), her little hands were cold. :( But we got her dried off and wrapped up and she warmed right up. No problem. (Whew) Answered Prayer!
This last week or so has been so special to see her open her eyes and look around while we are there. She is so alert at times. It only lasts 15 minutes now, but those are some really cool times. Answered Prayer! Also, we brought her smallest outfit we were given for some "growth inspiration." But by the next time we got there, her nurse had already put it on her! She was drowning in it, but it was so cute. Then she spit up and exploded out of her diaper! Of course, all dressed up and all messed up.
And this weekend, Ashley got to be held by "Oma," "Opa," and "Tante" Lete. That is German for Grandma, Grandpa and Aunt. JoAnn's parents and aunt were here. They are full blood German, so we call them by their German titles, like JoAnn did with one set of her Grandparents. They are Opa and Oma and my parents are Grandma and Grandpa. Less confusion that way. ;)
|July 15th: Wow, it has been quite a
week-and-a-half. Work went nuts for me for about a week or
so. I had a project come up quickly without much time to finish
it. So I've been very busy.
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
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. ;)
|July 18th: Yet another milestone reached! On
Sunday, Ashley moved into a crib! Answered
Prayer! It is one of those clear plastic
types that full term babies get to sleep in. It was so weird to
see her in there. It just didn't seem right to have her out in the
open like that. It was nice to change her diaper and pick her up,
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!
|July 24th: Ok, this time we have good news and good news,
so I'll give you the good
news first. ;)
Ashley did have laser eye surgery on her right eye last Thursday (ok, so that's not that good news). The good news is that she came through it very well. It only took a half hour this time (as apposed to 1.5 hours) and her eye barely looked swollen. She even opened it briefly that night. It took a couple of days, but now she is back to opening both eyes with no problems or discomfort. Answered Prayer! Hopefully, these two surgeries will have done the trick and she won't need glasses. This eye doctor seemed to think she has a decent chance of not needing them. We will have to wait and see, though. The surgery itself is pretty common for preemies and not extremely complicated. There is a chance that she could lose her sight due to the pre-maturity of her eyes and the surgery decreases that chance significantly.
Tonight, I got to give Ashley her first bottle! Answered Prayer! We started with 25mL of milk in the bottle. She drank, rested, drank, rested..... until the whole 25mL was gone. We went to put the rest of her feeding (38mL total now) into the bottle, but she fell asleep. But just as we started giving her the rest of the milk in her feeding tube, she woke up and sucked hard on the pacifier for the rest of the time. Her nurses were VERY pleased with how well she did on her feeding. She didn't have any problems breathing or with her heart rate or anything else. Answered Prayer! We had to work at the burp, but it eventually came, too. ;) They want her to take two feedings per day from bottle or breast. So it looks like we (mostly JoAnn) will be up at the hospital much more often from now on. As soon as she can take all feedings by bottle or breast, she gets to come home! It looks like it won't be very long, either. I'm not sure if I'm excited or scared over that fact. Probably a bit of both.
|August 1: What a bittersweet day we had yesterday.
Ashley has been doing so well. Its just so amazing to see her
grow, get stronger, and getting close to home. Its so hard to be
down when I want to jump up for Ashley's sake.
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. ;)
|August 4: Today (August 4th) is Ashley's due date.
She is zero today! Well, in adjusted age anyway. ;)
Seriously, the doctors and nurses have "warned" us that we are
getting very close to coming home. One or two more weeks to go!
Prayer! Ashley's nurse tonight
said that she took every-other feeding from the bottle today. She
said that when babies get that down, the other feedings come very
quickly. She was thinking that next weekend we could be taking her
Ok, I'm fine now. We just have to learn infant CPR, how to use the baby monitor, get all of her medications and learn how to give them to her. Ok, breathe, whew, whew, whew, hee, hee, hee. Oh, wrong event.
Ok, I'm being a little silly here. But I'm tired and nervous and feeling like we're riding a bullet train heading for the station of homecoming. Its coming fast folks. And we appreciate your prayers that have helped us get here. We really don't feel alone as we see the time coming, since we still have God on our side and all of your prayer support.
|August 16: Sorry for not writing in such a long time.
I know many of you are wondering when Ashley will come home. The
answer is Friday morning! Answered
Prayer! JoAnn and I have
been spending more time at the hospital trying to get her and us ready
for the transition. We have taken CPR training, worked on feeding
her, trained on using the oxygen and monitor, and learning how to give
her the medications she will need. We also were trying to schedule
appointments to all of her "icians" and "ologists."
You know, pediatrician, optimologist, neurologist, endocrinologist,
....... And who said we will get to stay at home for a while! ;)
We have always prided ourselves on being a good Aunt and Uncle. Now I guess we'll find out how good of parents we will end up being. "You mean I can't give her back when she cries?"
Ashley did have her last ultrasound while in the hospital today. She will have follow-ups done after she gets home, too. The result showed that the blood clot has pretty much disappeared. Answered Prayer! The problem remains that her right ventricle is still rather enlarged. Her doctor thinks that there doesn't seem to be any pressure built up in that ventricle, so he thinks the enlargement is due to a loss of brain tissue in that area. So once again, we are faced with the fact that she is at HIGH risk of cerebral palsy and possibly even mental retardation. Both JoAnn and I took this kind of hard today, since it just came out of the blue. Her neurological signs have been so positive. She is alert, looks around, focuses on an object, and responds to sound, touch, and sight. It just seems hard to believe there might be a problem. Even her nurses have remarked how well her neurological development is for a baby with her road in life.
It feels a little weird with Ashley coming home. I think I would be more elated and excited, but more than anything I think I'm just relieved. Sometime in the middle of last week, I hit the wall. I'm amazed that it didn't come earlier. I just felt emotionally spent and physically tired. I was just sick and tired of going up to the hospital. In the 4 months that we have been going up to the hospital, we have made 53 trips up to Milwaukee and back (6519 miles). I just wanted Ashley to come home. One of her nurses mentioned that it could take as long as the end of the month for her to come home; I almost lost it. That was NOT what I wanted to hear (especially at the time, Ashley's doctor was mentioning today as her target date for coming home).
I think JoAnn has been feeling pretty much the same way, too. Today we decided to put Ashley on formula from now on. JoAnn has been pumping for almost 4 months to provide Ashley with food to eat. That is a LONG four months without being able to breast feed or even see Ashley while pumping. She pumped 6-7 times a day (including once in the middle of the night). Many times we had to schedule shopping, church, or anything else around he pumping schedule. So we decided today, that with Ashley coming home, JoAnn didn't need that extra stress of taking care of Ashley AND pumping at the same time. She did a marvelous job of feeding Ashley when she needed it most. Preemie babies many times have difficulty digesting, with formula causing some of the problems. Thanks to JoAnn's milk, Ashley didn't have one (not ONE) problem eating ever since birth. Answered Prayer! Not once did the doctors have to stop her feedings due to digestive problems. Now JoAnn can just concentrate on Ashley.
|August 18th: It is with joy that I write this e-mail.
After 4 long months, our daughter Ashley Noelle Wester has come home.
Prayer! We said good-bye to
many friends we made at the hospital. Hopefully all visits from
now on will be social and not health related. ;)
Answered Prayer! I would like to thank every person that reads these updates for your continued prayer support. It has been unbelievably encouraging to hear so many people praying for us. There have been some dark times for us, but you kept bringing us before the Mercy Seat and God kept answering. Answered Prayer!
I hope the God has worked through me in these updates. I hope your lives have been encouraged by hearing prayer answered over and over and over again.
I will continue to write updates on Ashley as I know many of care for her nearly as much as we do. I probably won't write as often, but I will try to keep you up to date on the latest happenings.
Again God bless each one who has prayed and encouraged us in these