Face to Face

Black and white images streamed through my head as I tried to remember every detail of what had flashed on the screen the previous day.  The hand I would one day hold while crossing the street, the foot that I would tickle and the little back I would pat: these were all visions that I eagerly anticipated.   As telling as that moment was and as fortunate as I felt to have had it, something was missing.  I began to bite my lower lip as I always do when I get impatient but suddenly my thoughts were interrupted by a smiling nurse calling my name.  Pleased I wouldn’t have to clock anymore time in my obstetrician’s waiting room for the week, I followed her to the ultrasound room.  I was about to see the missing piece of my puzzle!

The day before, Jeremy and I had gone to get my 20-week ultrasound to find out the gender of the baby.  As rookie parents, we were so very relieved to hear the nurse finally tell us that everything looked as it should and our baby was healthy.  Then came the moment of truth that we had been waiting for.  To our surprise, she told us our baby was actually a “she”!  For some reason, we thought Morgan was going to be a little boy but of course we were overjoyed that in fact we I would give birth to a baby girl.  Of course, this put a kink in my plans for our son to become the next “Billy Graham” but of course God has even better plans ahead my Morgan.

As much as we had enjoyed seeing our little girl for the first time, she would never turn her little head to the correct angle to catch a glimpse of her face.  I told Jeremy how frustrated I was about missing this important “detail”.  So, my impatience got the best of me and I made another ultrasound appointment for the next day.  This time I was determined to see my daughter’s face for the first time.

                                       ___________________

In Psalm 27, David writes: “You have said, ‘Seek my face.’  My heart says to you, ‘Your face, Lord, do I seek’.”  Earlier in verse 4, he writes “One thing have I asked of the Lord, that will I seek: that I will dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to inquire in his temple.”

 I always wondered why David used the word “face” instead of just referring to the Father directly or to another part of God like his “hand”.  Why is it so important to see his face specifically?  The answer came to me as I sat in that waiting room.  I kept wondering why I was so obsessed with seeing the face of my little girl.  I certainly wouldn’t have made another appointment if I hadn’t seen her foot or an arm. However, I realized it’s a person’s face that makes them uniquely special and different from any other individual.  One notices new characteristics about someone as time is spent in their presence appreciating their very countenance.  Their specific attributes are often never detected upon first glance, but are often observed as their face becomes more familiar.  In Psalm 27, God is telling David to seek His character and favor – to seek the very essence of who God is.  There is no fault in seeking God’s hand by seeking His blessings or direction, but here God wants David to specifically seek His face, to gaze up the beauty of His Godness.  To seek God’s face means to immerse oneself in His character and to meditate on His precepts. 

John 14:21 says “Whoever has my commands and obeys them, He is the one who loves me.  Whoever loves me will be loved by my Father, and I too will love Him and show myself to Him.”  In other words, if we love God, we spend time with him and in turn God reveals more and more of Himself to us.  God must reveal himself if people are to see his face.  In Job 34:29, the Greek word for “revelation” literally means “removing a veil from one’s face”.^[1] That’s why it is so vital to make time to sit in His presence and mediate upon His Word.  Time with God can’t be rushed like every other aspect in our lives.  When we are in a hurry, our minds flutter back and forth between God and the tasks on our “To Do” list.  However, God wants us to push back the demands of life to create time to rest with Him.  He demands this time of focused attention to bless, strengthen and equip us for what is ahead.2  There is no wiser investment than making a daily appointment to spend time with God.  He faithfully rewards those who seek Him by showing them more and more of His character.

                                          __________________

The second ultrasound appointment proved that Morgan once again was not in the mood to get her picture taken.  She seemed to squirm in every possible direction but she wouldn’t lift up her head towards the “camera”.  The nurse said “Well, it looks like we just aren’t going to see her face until she is born.”  It was right then that Morgan happened to lift her head up suddenly in time for the nurse to snap the picture she needed.  Her timing was perfect and so was what I saw.  I realized I was looking at the face I would stare into for the rest of my days.  It was my first glance of what would turn into years of long gazes as I would see how God would grow her into the woman He wants her to be.

I’m sure to some that the ultrasound picture was unrecognizable.  However, as I have looked at this face over the last 18 months, it becomes clearer to me who my daughter is – a true blessing from our Creator.  The same can be said about gazing upon the face of God.  Although our first glance might not have been so clear, we grow so much closer to the One who knows us better than we know ourselves.   The Father of Abraham, Isaac and Jacob is the same yesterday, today and forever and He has immeasurable blessings for His children.  He wants them to seek a relationship with Him by making a regular appointment to seek His Face. 

   

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^[1] Manser, M. H. (1999). Zondervan Dictionary of Bible Themes. The Accessible and Comprehensive Tool for Topical Studies. Grand Rapids, MI: ZondervanPublishingHouse.

² Young, Sarah. (2010),  Jesus Calling, Grand Rapids, MI: Thomas Nelson, May 30.

Looking Up!

Morgan just turned 18 months and is a real ham.  The other day Morgan had  so much fun playing in the dirt and with sticks outside.  Then she wanted to play in the dog water.  I got her to come in and she went straight to my makeup table.  She sat there and opened my blush compact and put blush on both cheeks by herself!  So, I guess she is a girly girl and a tomboy.  My Morgan has quite the extroverted personality.  When we go to our weekly blood drawers, her game is to wave at as many people as possible as they walk by.  She also has a temper and I can't imagine where she got it from.  :)  When she gets mad she pulls her bow out of her hair and throws it on the floor.  If I don't see her throw it on the floor, she picks it up and throws it again to get her point across.  She is really something else and I just do my best not to laugh in those moments.

Morgan’s ANC went down to 200 last Friday which is not good.  However, we did injections three days in a week this week and now it is 17,000!  It is great to know that her body is very receptive to the injections.  Her hematologist switched her to getting four injections a week but hopefully we will get down to 3 again soon.  He said it is just a process of trial and error to get the proper dosage.

Our new protocol for her getting sick is that if her fever gets to 100.4, we are to call the hematologist.  Depending on her levels at the time and other symptoms, they may tell us to either wait a few minutes to see if it goes down, go to our pediatrician, go to see them in Temple, or go to the ER.  So, we just take her getting sick on a case by case basis.  This is much better than before she was on Neupogen where we had to go straight to the hospital in Temple if she ever got over 101.  However, I’m pretty much scared to death about her getting sick.  I know it seems silly but my biggest fear about her going to the ER is the IV splint.  They have to put an arm splint on toddlers when they get an iv.  Morgan goes BALLISTIC with even a band aid so I don’t think she will handle an IV well. 

For now, we are keeping playdates to one-on-one and only one or maybe two a week.  Also, she can’t be in any enclosed areas with a lot of kids so the church nursery is not an option.   This new careful lifestyle definitely adds a new level of stress to most things we do but all in all we are SOOO fortunate that she doesn’t have one of the other forms of neutropenia.  I always tell myself that Autoimmune Neutropenia is merely an inconvenience considering what some other families are going through.  This has been a very eye-opening experience.  Every time we go to the hematologist, we see a child getting chemo.  We are SO fortunate!

Overall, things are looking up and we have come a long way in the last couple months.  Kristy and I are meeting once a week and it’s nice to talk with someone that can relate.  We were sitting at Jason’s Deli last week and I heard a kid behind me with a horrible cough.  I gave her a look like “oh crap!” and she started to laugh.  Then we started talking about lifespans and incubation periods for various bacteria.  It was nice to converse with someone that is as OCD as I am these days.

Also, I started a Facebook page for Autoimmune Neutropenia.  It only has 9 members but I’m hoping that I can be encouraging to some moms that are just now finding out about their children having this. 

Jeremy also likes to remind me that since Morgan has been on the Neupogen, she has never slept so well!  This is the first time ever that she has slept through the night consistently.  It’s pretty stinkin’ amazing to get some real sleep!  Also, Morgan is obviously going to feel better when she gets more sleep.

Here are some recent pictures of my baby.  Enjoy!

Ups and Downs

Here is an overview of Morgan’s ANC (absolute neutrophil count) with the Neupogen injections.  For those of you that just tuned in, neutrophils are the most prominent white blood cells that serve as the front line of defense against bacteria.  Severe neutropenia is 0-500, 500-1000 is moderate and 1000-1500 is mild.  A child under 2 has a normal count when it is over 1500.  Neupogen is a drug that causes her bone marrow to work in overdrive to make more neutrophils to compensate for the ones that her antibodies are killing off.  Morgan gets injections on Monday, Wednesdays and Friday evenings and we do bloodwork every Friday morning.  Dr. Grayson wants to keep her counts between 1000-1500.  Here are her counts from the first weeks of Neupogen:

Friday before Neupogen - 220

Week 1 – 1581

Week 2 – 2500

Week 3 – 300  (last Friday)

Wednesday morning of this past week – 600 and she was very irritable

Wednesday evening– started new vial of Neupogen   

Thursday – great mood and very content!

Friday(yesterday) – 4500 and very irritable

Needless to say, we were very discouraged on Monday when we found out her ANC was only 300.  We think she had a little stomach bug which could have lowered it.  She was really irritable Wednesday morning so I took her to the pediatrician to have her checked out and to have bloodwork done.  She checked out fine and her ANC was 600 something.  Dr. Grayson said this isn’t where we want it but fortunately it is moving in the right direction. 

I was so encouraged when she was in a wonderful mood this Thursday.  However, she was in a horrible mood on Friday so I thought her ANC had dropped again.  We were very happy to hear last night that it was actually very high at 4500!!!  This is actually too high but at least we know the Neupogen is working.  The high number also explains her recent irritability because Neupogen can cause bone pain and headaches.  We are giving her motrin to help with this.

Obviously that is an extreme jump from 600 on Wednesday to 4500 on Friday and we think we know why.  I found a new friend in College Station whose toddler has tested positive for AIN also.  Actually, she found me through the Baby Center neutropenia board.  It is really a God thing that we connected.  We had dinner on Tuesday and are going to get together once a week.  Kristy is very well-read and has a good understanding about the latest research and challenges concerning kids with Autoimmune Neutropenia.  She told me that there is some controversy over whether to use the 1ml vials of Neupogen more than once.  The nurse at the hematologist’s office told us to use the 1ml vials over and over until each is gone and showed us how to use it “sterilely”.  However, Kristy showed me how the company clearly states that they are “one-time use” vials since they contain no preservatives.  My question was then if the reasoning was to prevent bacteria from entering the vial or because the Neupogen becomes less effective.  I called the same nurse the next day and she assured me it was only for sanity reasons and said the way she showed us to administer the medicine would keep things sterile.  

However, I talked to Dr. Grayson that evening who said that using the vial multiple times could actually decrease the effectiveness of the drug.  For Monday’s dose we were at the end of a vial, so we started a new vial on Wednesday and that explains the high number on Friday.  Therefore, the nurse was incorrect which caused several of Morgan’s injections to be ineffective or not as effective.  If Kristy hadn’t pointed that out to us, we would have kept wondering why her numbers were going up and down for no reason!  I’m so grateful to her because I would have been such a basket case.

The drug is very expensive which is why wasting the rest of a vial is an issue for a lot of people, especially for those without insurance.  In Morgan’s case, she only gets 0.17 of a 1ml vial.  A box of 12 vials (4 weeks worth using 3 a week) was $3400.  That comes to $283 an injection.  Fortunately, our insurance is paying most and we’ll of course do whatever we need to for our baby girl to be healthy and happy.

It is SOOO good to know that the Neupogen is doing its job.  We go to Temple on Tuesday for our monthly appointment.  He will probably tell us to lower her dosage or at least that is what we are hoping.  J  He also told us that as long as we fill up three syringes at once on Mondays, they will be effective for Wednesday and Friday’s dose.  I’m not completely sold on that idea since the Neupogen company clearly gives other instructions, but I will ask him more on Tuesday.

Jeremy just said to me how far we have come in the last few months.  We figured out why she was sick all the time.  We got a diagnosis.  We found an effective treatment and as of a few weeks ago.  Morgan is sleeping through the night. And more importantly, we know that she will spontaneously go into remission.  We know that this will come to an end.  God has been so faithful to assure me through this process – through His Word, through people, through songs, etc.  He is so faithful and He has brought us a long way.  One thing is for sure, our little girl is so special and he has some amazing plans ahead for our Morgan!  Please pray she goes into remission soon, and that we find the right dosage so she feels better.

Reflecting Back

Morgan had bloodwork done on Friday to see how well her body is responding to the Neupogen injections.  In spite of getting poked twice, she did a great job!  I think she is getting used to all the blood draws.  We got a call from the hematologist Friday evening.  Dr. Grayson said he “was very happy to say that her neutrophil level is 1580 and her overall white blood count is 9000.”  We were ecstatic to hear that especially since it was 0 a couple weeks prior.  This is exactly where he wants her neutrophil level and so we are going to stick to the same dosage for now.  She will do blood tests weekly as we watch what her levels are doing.  Hopefully in a couple more weeks , we can start having playdates again. 

This whole process has been somewhat isolating.  We haven’t been to church regularly in the last year because Morgan was getting sick every time she went to the nursery.  This is a stark contrast to my life when I was pregnant since I worked full-time at our church.  Also, we haven’t had playdates with friends in a couple months.   I think God has done that partly to force me to draw closer to Him.  I’m just sorry that my little extrovert can’t see her friends these days.   I look back and know now why I didn’t feel comfortable taking her certain places or why I have been obsessive about germs.  That’s the kind of mother Morgan needed and God is so faithful to speak to us through our “motherly instincts”.   It’s nice to now understand why she was always getting sick and that I wasn’t just an “overprotective first time mom” as someone told me.  I can even see how the milk allergy and reflux played into this because I think it was good preparation for the three of us.  Now, that I look back, I can say to God, “Oh, I get it now.”  My heart longs to serve Him in some capacity but I understand now why God has wanted me to focus all my time and energy on Morgan.  God is doing some exciting things and He has some really big plans for my little girl!


Morgan has had more energy than ever.  Her favorite activity is chasing the dogs with her lawnmower.  She starts laughing so hard she can't stand up straight.  Today she put on one of her shoes by herself and decided to walk around with one shoe on for a while.  I found out I have some thyroid issues last week, so hopefully the medicine kicks in and I can have more energy to keep up with her.  She says several words but also has her own language too.  We tell her "I love you" often and Morgan says I love you by saying "AYY-yah".  It's pretty funny and there is no doubt that is what she means.  She has also started to sleep a lot less and her nap has now moved to 3pm instead of noon.  She seems much more contented now that she feels better.

From 6 past blood draws from her old pediatrician, I calculated the ANC’s.  In August of 2011, she had an ANC  of 2500 which is outstanding.  Then, it kind of goes downhill from there.  I think she has had this since at least October of last year.  If that is the case, she has already had it 8 months.  So, I am starting to pray that Morgan goes into remission early.  I guess we would know by the weekly blood draw counts and another antibody test when the time comes.  I have tried to network with other moms of kids with Autoimmune Neutropenia.  There are about 14 active AIN moms on a Babycenter board I found and 3 of them have kids with anc’s low enough to be on Neupogen regularly.  Hopefully, I hear back from them as I have questions like “Will she get sick as often as she did before or will it just not be as severe or both?”  I guess I am interested to see what our new “normal” will be in a few weeks.   God has brought us a long way in a short time period and I’m sure He will continue to do the same.

During the past month, I don’t think I have ever heard the Lord speak more clearly to me.  It has been amazing how God has communicated to me very specifically through His Word. During the week we were waiting for her diagnosis, I literally felt as though God had a protective spotlight of his love and peace on me at all times.  I’ve spent years in seminary classes but I have learned more about His character in the last few weeks than any time in my life.  I could spatter off a whole plethora of verses that God has emphasized to me but the ones that are heaviest on my heart right now are 2 Cor. 4:16-18. “ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  

Neupogen

On Friday morning, we went to see Dr. Grayson in Temple.  Morgan has been in a great mood this past week and has come a long way since our last visit to Temple.   She had a lot of fun playing in the exam room and looking at the animal pictures on the walls. 

Dr. Grayson explained that the Autoimmune Neutropenia is not caused by a lack of neutrophils being made in her bone marrow.  There is actually an antibody in her bloodstream that kills her neutrophils which is why her counts are so low.  Autoimmune Neutropenia occurs in 1/500,000 and there is no known cause.  Fortunately, he said she will grow out of this by the time she is school-aged and probably sooner!!! 

In the meantime, we will give her Neupogen injections three times a week.  The Neupogen causes her body to make more neutrophils to compensate.  On Fridays, she will get blood taken in town to monitor what her levels are doing.  Hopefully in a few weeks her white blood counts will be at a normal level.  Until then, she won’t be able to play with other kids and we just need to be really careful about where we take her.   We are so fortunate for the injections as her low levels can put her at a high risk for deep skin abscesses, pneumonia and mouth sores (which she already has had). 

The only negative side effect to the injections is that it can cause some bone pain and headaches.  She was irritable after her first injection but she has two incisors coming in, so it might have just been her teeth bothering her.  Pray that her levels normalize soon and that she doesn’t have any side effects.  Thank you so much!

We have a Diagnosis! :)

I was laying on my bed praying during Morgan's nap and unexpectedly, Morgan's hematologist called.  He said he already had the results of the antibody test.  He had some excitement in his voice when he said she is positive for the antibody.  That means that her bone marrow is creating antibodies that are attacking her neutrophils.  The reason her counts are so low is that she is making neutrophils but her body is killing them off before they can mature.   It is called Autoimmune Neutropenia or Chronic BENIGN Neutropenia.  The GREAT news is that she will grow out of this by the time she is school-aged.  In the meantime, Dr. Grayson said there are some injections we can give her to help her not to get sick so much.

This is such an answer to prayer that she does not have the more serious kinds that can lead to cancer.  We have SO much to be thankful for and God has been so faithful to us!  We are also overjoyed that we do not have to do the blood draws.  We go to Temple on Friday at 10:30 to find out about the injections and to find out more about the Autoimmune Neutropenia.  We are so relieved!!!  Thank you so much for your prayers.  This is a huge weight that has been lifted off our shoulders.  We can't thank you enough for your prayers, love and support!

Rough Morning

 I just found out her bloodwork still has not changed (0-70).  

  I'm so frustrated and upset.  I found old bloodwork that said that she had neutrofils levels at 2500 at nine months.  Also it said her levels were 700 just two weeks ago - april 12.  There was another set I found from several months ago that said her levels were 900.

Morgan's new blood draws have all shown so far that there has been no change in her neutrophil levels.  I just got a call them saying that yesterday's blood draw was 64.

I got copies of the old cbc's from upa and found out that there are at least three occasions that Morgan has had neutrophil levels over 500 in the past.  In August of last year (at 9 months) her counts were 2500, which is well in the normal range.  It also shows that her level was at 793 on April 12, 2012.  I told the hematologist this yesterday and he said "At this point we can probably  assume she doesn't have the congenital and that we are looking at AIN, cyclic or transient."  He said we just need to see what all the results show in the next few weeks.

I'm having a rough morning for some reason.  These low levels this week make me keep wondering if it is congenital. 

We find out at by the end of this week what the results of her antibody tests are.  A possible explanation for the low levels is that she has the Autoimmune type.  This is where the body kind of has an allergy to her neutrophils and are killing them.  This is actually not such a bad thing bc it always goes away by the time they are 5 years old at the latest.  Also, the injections can help in the meantime.  The antibody test might tell us this.  It has a high rate of false negatives.

Morgan has been on bactrim a lot in the past and I was on it a lot when I was nursing her.  This can also cause neutropenia.  I gave her two doses last weekend for the sore in her mouth because I was desperate.  I am wondering if that has anything to do with this.

Pray that I have a peace about this and that I can rest in what the doctor said.  We are so thankful that Morgan is in a great mood and eating well.