Prayer For My Sweet Charlotte - Diagnosis

In the NICU

These past few days have been really trying for me. I am sure any mother (or father) can understand the feelings that begin to surface when your own child is sick, or when the potential diagnosis is one you have been dreading (and avoiding).

As many of my readers know, Charlotte was born with SVT. She spent the first week of life outside of my womb in the NICU. Within in a hour of her birth she was taken from my arms and rushed to the NICU because her heart rate was frantically racing at 280 bpm (beats per minute). Once the pediatric cardiologist got her heart medication at the perfect dose for her, we were told she could come home; however upon our arrival to the NICU things had changed. At some point during her 3^rd day at the NICU Charlotte developed a nasty rash on her back that was cause for alarm. (One explanation was it could have been from the digoxin - but the cardiologist said it was not that) The neonatologist called in a dermatologist who examined Charlotte and felt the rash was benign, but the neonatologist (who I really did not like) decided that on top of the SVT Charlotte had neonatal lupus. She was certain that is why she had the rash. This meant more blood test, and even blood test for me. Neonatal lupus can only be passed to a child from the mother. (I had never in my life been diagnosed with lupus) More drama occurred with the blood work and it was just all a mess. Fortunately my OBGYN (sweet man he is) went and examined Charlotte himself and determined that my child needed to be home with me. You see, the neonatologist wanted to keep Charlotte in the NICU for a whole month waiting on the results from the neonatal lupus! This was highly absurd because if she did have neonatal lupus, it was in no way life threatening and there isn’t anything they can do for it anyway and it would go away.

My poor baby with the rash

The blessed day came when we brought our little fat baby home. Charlotte weighed 9lbs 14.1oz at birth, although the doctor swears she weighed 10lbs because she peed all over him the second she came out! This is when the real struggles began. Charlotte cried (and I mean screamed her head off) from the time we brought her home until she was about 5 or 6 months old. She nursed every hour to 2 hours until she was about 7 or 8 months old, and has only slept for more than 2 hours twice in her whole year of life. Each time we went to the pediatrician with our concerns about her not sleeping and all the crying and constant nursing we were told she has “colic”, but was not told “what” colic was. On top of all this, Charlotte began to fall off the growth chart with her weight.

The pediatrician that we had at the time kept pushing me to discontinue nursing and start Charlotte on formula; I of course refused, knowing that breastmilk was 100% better for her than formula. This began a battle of the will with our pediatrician. Every month Charlotte had a weight check and every month she was below what the pediatrician felt comfortable with. The last straw was at Charlotte’s 10 month check up when she literally walked in with a case of formula. She also said that she was sending Charlotte for a ton of blood work and to test her for Cystic Fibrosis. At this point I was exhausted with this doctor and my patience was completely gone. Fortunately I have a husband who knows me well enough to know this was all I could handle, and he made the decision to get a second opinion and never see this pediatrician again.

A few days later we had an appointment with a new pediatrician that my lactation consultant referred us to and it was love at first visit (ok, so cheesy, but you get the point). This doctor examined Charlotte, went through her medical records and asked us lots of questions. She immediately calmed our fears that something “must” be wrong with Charlotte since she is so little, but instead was very optimistic that Charlotte was simply just “little”. Just to be on the safe side we allowed her to order blood work to check Charlotte’s thyroid, kidney and liver functions and a few other things, which all came back normal. From this point we have been able to breathe because all is well in the land of “Charlotte”.

At this point I must say that as I type tears will most assuredly stream from my ever so tired eyes.

Last week Charlotte was sick pretty much all week. I had no success at home in getting her fever to break and she was simply miserable. After two trips to the ER and one trip to see the pediatrician, we finally found out Charlotte had a “big ole’ fat virus” (yeah that was exactly what the doc said…technical huh?). Then she developed a viral rash, which I have never heard of happening before, but as of today, Charlotte is well (so it would appear from the outside).

We took Charlotte in for her 12 month baby-well check-up and it seems that my sweet darlin’ has only gained 4oz in 3 months, leaving her at a not so whopping weight of 15lbs. If you go back and do the math that means that she has only gained 5lbs in 12 months. (Here comes the water works…so bare with me)

All of the fears that I had about Charlotte being so tiny and not gaining weight are all rushing back to me with relentless force. The pediatrician put in a referral for a consult with a pediatric nutritionist, but our insurance denied the referral because they do not (under any circumstances) cover nutritionists. The pediatrician also ordered a bone age scan of Charlotte’s wrist to determine her biological age. Basically if she her biological age (late bloomer) was 8-10 months old, then weighing 15 lbs would not be cause for concern. That scan came back this week and her biological age is anywhere between 12 and 15 months, which causes much concern about her weight. When we found this out my heart sank in my stomach. I cannot even begin to explain the fear that begins to cloud my ability to think objectively at this point. (It’s a good thing I have my husband and some awesome women of God around me)

Hopefully the last time with the Holter Monitor

What’s the next step? The doctor wants to go forward with the test for Cystic Fibrosis and she is referring Charlotte to a Gastroenterologist. Had she thought this was an issue of being a late bloomer then she would have suspected a hormonal issue and referred us to an Endocrinologist; however that is not the case, it must be a digestive issue. The doctor suspects that Charlotte is either not getting enough calories in her diet, or her body is failing to absorb that calories she is getting in her diet. If it is the former then we count calories, weigh her food before she eats and weigh what she didn’t eat and we determine what she is getting every day at every meal. If it is the latter, then we face the possible diagnosis of Cystic Fibrosis or some other genetic or physical defect that needs to be addressed and remedied quickly.

Breathe….

Wipe tears….

Ok…

What does this mean? This means I am one worried momma, and no amount of “it’s going to be ok” is going to make me “feel” better about all the potentials. I must confess I am pretty strong and able to maintain composure with most things, except when it comes to my husband and children. It’s like all rational thought just oozes out of me and I am on frantic mode until the dust settles. These are not my finest moments.

I know that God is Sovereign over all things and that Charlotte simply does not belong to me. She is the sole (and soul) property of the One who Created her inner most being, and He can do and allow whatever He wills for Charlotte; without asking for my opinion or my approval. I have learned to trust the Lord with my soul, my finances, my shelter, my food, but when it comes to my husband and especially my children I want to hold the reigns a bit a lot. Peace seems to be a distant carrot that I am stumbling through the darkness to grab a hold of.

God’s word tells us to “Cast our cares (“anxiety” in the NASB) on the Lord, because He cares for you.” 1 Peter 5:7 and in Philippians 4:6, “Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”

When I begin to panic these two verses flood my mind (there should be a “flash flood” warning). I called a sweet friend of mine yesterday when all this began to overwhelm me and I went on to tell her “I know that God is Sovereign, that Charlotte does not belong to me, and that I am to be anxious for nothing and cast my cares on the Lord…but…” and that is where she stopped me and said “no, no but”. She was is totally right. I know that when we say something and then proceed with the little word “but”, we have just negated everything said prior to that “but”. What a silly little word!

I have learned that when I create a hypothetical situation in which I leave no room for God’s Sovereignty or His Grace that I am removing that which commands me to place ALL my trust in Him; and this results in sin. There are no situations in this life in which God is not bigger, more powerful and more knowledgeable on ALL possible outcomes. Who am I to think I can create a situation in which He has no control? Who am I to question what He allows to have happen to my children? Their lives are NOT about me. Am I affected by proxy by the events that occur in their lives when they are little and possibly when they are grown, yes. Does that mean that I am afforded the right to through a huge pity party in my honor because of the trials they face? No. What God does in their lives and to their lives is simply not about me. When they receive healing (or not) He gets all the glory. When they come to the knowledge of the law, are aware of their sin and position to God and hearken until to His calling and receive salvation, it is not about me, it is all about God. My children belong solely to the One who Created them and all things. They are simply placed within my stewardship until a time comes when they leave and cleave to their own spouses. Even if they grow up to be great men and women of God, I cannot be so arrogant to take even the smallest amount of credit; it ALL belongs to the Lord God Almighty. He is the Author not only of life, but of life eternally. If I can take no credit for my own salvation, then I surely cannot take any credit for my children’s.

Even in the midst of this trial, I must remain focused on Christ and know that it simply is not about me! God is doing what He wills for His own purposes and good pleasure. My children are on lease to me, but ultimately are owned by God. Who am I to tell Him what He can and can’t do with or to these children that He has entrusted to my earthly, limited knowledge and control stewardship, for HIS purposes? One day I might have the honor of seeing the bigger picture, but for now my scope of the picture is very limited. While I walk though this trial with my Charlotte I need to be a shining example of what it means to “walk by faith and not by sight”. My children’s very first impression of the Lord and His ability to care for our family even in the midst of illness is going to come from me and my husband. No one else can have such a permanent impact on these children.

Please be in prayer for Charlotte. What we ask most is that God’s will be done in her life and in Sofia’s life. If that means Charlotte has Cystic Fibrosis, then praise the Lord for He is in control and is not panicking one bit. If Charlotte has some other serious illness, or is perfectly healthy, we need to all praise the Lord for all He does is Good. He gives and He takes away and is Justified in all He does and allows to have happen.

Serving God and My Family,

Crystal <>< (SAHM)