Showing posts with label neonatal alloimmune thrombocytopenia. Show all posts
Showing posts with label neonatal alloimmune thrombocytopenia. Show all posts

Saturday, April 20, 2013

Sunday's Coming

At our church, we have a phrase of hope when things are tough.  "It might be Friday now, but Sunday's coming."  It stems from an Easter service where we contrasted the hopelessness of Good Friday to the overwhelming joy and promise that Sunday morning would bring.  The application of that Easter message to our lives has never hit closer to home for me, than right now...
In the early hours of Tuesday morning, nurses came to tell me my newborn baby girl was in the NICU with dangerously low platelet levels.  Normal range is somewhere between 150-200 thousand.  Hers were 9,000. She could possibly have bleeding in her brain and major organs.  There were no answers yet for why this was happening to my baby.  I couldn't see her, hold her, or feed her. 
That was Tuesday, but Sunday's coming...
By Wednesday morning, my two-day old daughter had undergone a blood platelet transfusion.  She was being tested for a full gamut of infections, blood disorders, and dangerous viral diseases with long term effects.  Still no real answers for what was going on inside my girl. 
That was Wednesday, but Sunday's coming...
Thursday rolled around, and Lucy had undergone a second platelet transfusion.  This time her levels one hour after transfusion were 198k, which was a big step in the right direction, the first time we crossed into safe platelet levels so far.  However, she was still not holding on to her gains, and she dropped back down to 108k twelve hours later. 
That was Thursday, but Sunday's coming...
Friday marked the first day that little Lucy was making progress in the right direction on her own.  Without transfusions or IVIG treatments, she increased her own platelet levels by 7,000.  A small gain, but we would take it.  Dr. Walker seemed fairly confident that Lucy was not suffering from an infection or a life-threatening virus after all.  She was tentatively diagnosed with neonatal alloimmune thrombocytopenia.  Still no discussion about when our girl could come home though. 
That was Friday, but Sunday's coming...

Saturday morning, this morning, we made our usual call to the NICU to check on our girl's progress and found out her platelet counts had come up to 236k without any interventions!  Her body was winning the fight!  We celebrated our biggest win yet and prayed right then giving thanks to our God who is faithful to answer prayers and fulfill the desires of our hearts.  We headed to the hospital to visit our girl to find her detached from all wires, tubes, and monitors.  Dr. Walker came over to inform us Lucy was being released and could go home with us...tomorrow...Sunday. 
Right now, I type this post from a complimentary hospital room with my healthy baby girl asleep beside me.  We are "rooming in" with her tonight.  She finally got to meet her big brother this evening, and he is enthralled with her.  She will go in for one last set of lab tests in the morning, and provided all goes well, we will take her home around lunch tomorrow. 
It's Saturday now, and praise God, Sunday's coming! 

Thursday, April 18, 2013

Along Came Lucy

What a whirlwind these last couple of days have been.  Perhaps I should start from the top...

Monday morning on my way to school, I knew something was different about the way I was feeling.  By the time I got to school, I thought my water may have broken, but since I had never experienced that before and it wasn't like I'd seen in the movies, I wasn't sure.  Shortly after, I began having contractions, nothing too strong or serious, but noticeable.  I began timing them on my phone and they were coming fairly steady at five minutes apart.  But, I could talk and teach through them, so I did...all day until 8th period rolled around and it was hard to keep a straight face in front of students about every 3 minutes.  I skipped the faculty meeting and called Michael to ask him to meet me at my doctor's office to be checked; we might be having a baby today.  Sure enough, I was 5 centimeters dilated and water was broken, so we headed to the hospital.  By the time I got checked into a room and settled, I was at 7 centimeters.  Epidural, check.  Thirty minutes and four pushes later, we had a baby at 7:21 pm weighing in a 8lb. 1 oz. and 20.5 inches long.  It was just that easy.  I thank God for such an easy delivery, because I would need every ounce of strength I had a little later...

When Lucy was born she was VERY bruised, especially her face and shoulders.  We didn't think too much of it at the time because being born is a traumatic experience and some babies bare the marks. However, this was the first sign that something wasn't quite right with Lucy.  We bonded together for about an hour right after birth and then the nursery took her for labs, weight check and a bath.  When she came back again, she had started to develop a rash of speckly red dots on her head and other parts of her body.  Again, babies are born all colors, no worries.  She nursed well, and all was right with the world.





The nursery came in early the next morning to take her for her checkup with the pediatrician, and by 6:30 two nurses came back to our room to inform us that Lucy was being transferred immediately to the NICU.  They explained that the rash had spread all over her body and caused them to run some blood tests.  The results showed she had a severe blood platelet issue.  Normal platelet levels are somewhere between 150,000 and 400,000.  Lucy's platelet levels were 9,000.  She was diagnosed with neonatal thrombocytopenia.  Something was attacking her platelets, and her blood had almost no clotting ability.  What we thought was a rash and bruises was actually internal bleeding.

We were stunned into silence.  We couldn't see our baby.  We couldn't hold her.  I couldn't feed her.  We hadn't spoken to a  doctor.  All we could do was wait, and pray.  So that's what we did.  Immediately, we gave Lucy to our Healer in prayer and claimed complete healing in Jesus' name.  And even then, in that moment of great fear and unanswered questions, I felt God whisper, "I made her.  Don't you think I can take perfect care of her?"  And my heart had a peace, but the Momma in me was in tears.  I had to relinquish control.

The NICU doctor finally came to talk to us and explain what was going on.  She was extremely concerned about Lucy's platelet levels and observing her closely in the NICU.  She needed to be handled as little as possible.  There was a whole list of things that could be causing Lucy's condition ranging from "no big deal" to critically life-threatening.  She needed several more tests run and time to observe her.  She urged us to be patient...and stay off Google.  So we waited, and prayed, and alerted our friends and church families to pray.  Before long, our baby Lucy was on every prayer list in a tri-state radius, and we were humbled by the outpouring of love and support.

Dr. Ravenscroft decided to start a treatment of IVIG (intraveneous immunoglobulen) which would help to "protect" the platelets she had from further attack.  Shortly after, she decided a blood platelet transfusion was necessary.  I can now say from experience, signing a paper to okay a blood transfusion for your one-day old daughter is much harder than it sounds.  The doctor's priority was to at least bring Lucy's platelet count above a critical level.  We were shooting for above 50,000 after the transfusion.  The doctor also ordered a head ultrasound and chest x-rays to check for internal bleeding in her brain, heart, lungs and abdomen.  Talk about scary, but I refused to be overcome by worry and fear.  I didn't cause the situation.  I couldn't change the situation.  And, I was powerless to cure it.  But, I was completely leaning on someone who could...

I can't imagine what it must be like facing situations like these without a personal relationship with God.  There were moments when I couldn't breath.  I couldn't move.  I can't imagine processing all of this alone.  God has carried my husband and me on his shoulders.  I know so, because that's the only way I can sit here and type this right now.  By the end of day one, just when I thought I would break into tiny pieces, Lucy's platelet results after the transfusion came back at 75,000 and her x-rays and head ultrasound did not show any serious internal bleeding on her brain or major organs.  What a difference some good news can make!  My hope was renewed.  A major win for day one!

The next morning, Lucy's platelet levels had dropped back down to 45,000.  Something was still destroying her platelets, and we didn't know what.  The major suspect was alloimmune thrombocytopedia, meaning the antigens she inherited from Michael and me were attacking the platelets in her body.  Michael calls it a "street fight" in the blood.  And, believe me, with all the options on the table, this is the one we are hoping for.  Eventually, it will fix itself usually.  Still there were several tests needed to know for sure, and some of the tests wouldn't come back with results for several weeks.  The doctor ordered another round of IVIG and another blood platelet transfusion, a repeat of the prior day's events.  This time, Lucy's blood platelet results came back at 198,000 after transfusion, which was a total miracle from God.  In a day's time, Lucy had gone from 9,000 to 198,000, a normal range reading.  We just needed her to hang on to those levels...

This morning (day 3) her levels had dropped again to 108,000 still indicating a pretty aggressive level of attack.  We still don't know what, and I still haven't Googled it.  Dr. Ravenscroft says, "When you hear hoof sounds, you think horses...not zebras."  Meaning, there is a wide range of possibilities still on the table, we are going to look at the most common (and less serious) ones now, and worry about the zebras (less common and more dangerous) later.  She ordered another round of IVIG, but no transfusion this time.  We have been allowed to hold and feed her today since her levels are within a safe range, and she is not at risk of uncontrolled bleeding.  Lab results from this evening showed an increase to 130,000 platelets without a transfusion.  Another success.  All glory to God.  Again, just when I think I can't press on, God reminds me, "Lean on me.  I can handle this.  None of this has taken me by surprise."
Yet again, I have entered motherhood reminded that my children are not my own; they are His.  I am honored to have the opportunity to be Lucy's momma, but He is her Father.  He has her in the palm of his hand, and He doesn't make mistakes.  My baby girl is safe in her father's arms.  Each day, I am being refined as we live out God's plan for baby Lucy.  And just like gold must go through fire to bring out its true beauty, we must endure trials from time to time to grow closer to God and become more mature.  I am trusting and believing for complete healing and restoration of our little Lucy.