A PIECE OF MY HEART

I know, I know. It's been too long and I never updated when our precious, promised daughter from the Lord arrived, BUT there was good reason. I had most likely mentioned in my previous post about the annoying rash I'd developed with my pregnancy with her. It wasn't terrible, but at times did require some benadryl for me to get some sleep, but for the most part was managed by topical ointment. Well, let me take you back to the month of June 2012.

First, we normally celebrate our precious Layah's life by going to the beach each year the first week of June, but obviously we couldn't do that this year so we decided we'd take the boys to the Georgia Aquarium. We took a trip on Saturday which was the 2nd, Layah's actual birthdayMatt began a program. I wont go into all that but I'll just say, it was a partial program to help him with some things he was struggling with that had really gotten out of control that we knew needed to be addressed before Arwyn was to arrive. So while he was doing this program that we were told would be 8 weeks, Tobi began to not feel well. To make a long story short, Nana took him to the doctor after 2 days of a stomach ache and him not wanting to eat, which is HIGHLY unusual for Tobi, and we were referred to the ER, and it ended up being appendicitis. So on Matt's birthday, June 21st...Happy Birthday to you Dad, Tobi had his appendix removed. He had not ruptured, bu the surgeon advised us it was acute and could have made him extremely sick had it ruptured or they not gotten to it when they did. So, home we go.

Then, the next week, I got my cerclage removed. We had scheduled it to be done in labor and delivery because of the way that my cervix is. Dr. Davis did have some difficulty getting to it, and we were all very glad that we'd not attempted to remove it in the clinic. Mom and I went and ate at Red Lobster and then headed home. As I was sitting in the floor playing with Luke, I looked at him and saw a bulge under his chin. He looked like he had an Adam's apple. So, I felt it and it felt like a moving ball in his throat. He was breathing and eating fine. I'd called the pediatrician and the nurse said we could have it checked at the after hours clinic. The ER doc there said that it was a cyst of some kind, but that it needed to be checked by ENT. I went back to work and and then on that Wednesday I ended up having to get Matt to take me to the hospital in the middle of the night because I was having contractions. I was 37 weeks. We thought Arwyn was coming and this was gonna be it. I ended up having a UTI and was dehydrated. Once they got me dehydrated and gave me Demerol and IV antibiotics for about 18 hours, they let me go home, and I actually went back to work that Friday. We just knew that she would come that weekend.....but no....Arwyn had a plan of her own. She was not ready.

Matt's mom ended up taking Luke to his ENT apt with Dr. Witrak and he said that he suspected it was a thyroglossal duct cyst and would need to be surgically removed but for now, he'd be put on antibiotics to shrink its growth and once we had Arwyn, we could schedule his surgery. So, daily, we were anticipating that Arwyn would be arriving....then we got to suspecting that it might not be happening.... I went for my weekly OB visit and I wasn't dilated anymore than most non high-risk moms at this point. We had my shower on dad's birthday (June 23rd). We'd gotten her room ready, everything washed, car seat installed, pump ready, bags packed for boys and me and Arwyn, now all we had to do was wait for her to arrive.

The Cornwell's were planning a family reunion for July 4th weekend at Peggy and Earl's house. I told her we'd try to be there but it would just be in there air...up to baby Arwyn. We were able to go and I thought "what the heck, the swimming might actually get things going and get her ready to come out." It didn't. She wasn't ready. It was good to see all the Cornwells, especially Ashley and her girls all the way from NJ, even though I get to keep in touch with them through FB it was good to put my hands on her. I went back to the OB that week and we were no closer, so we scheduled the c section for that Monday, July 16th. We spent that week doing the usual and finally realizing, Arwyn Hope Shelfer wasn't coming on her own, she was nice and content where she was and she was gonna have to be taken out. It was all part of the plan.

The 11th of July Tobi had been attending the Church of the Highland's version of VBS and he made the eternal decision to accept Christ and the make the profession of faith to others and get Baptized so he was by Pastor Blake, It was an amazing experience knowing that I'd started this church single back when it first began with just 400 people showing up in 2000. Pastor Chris dedicating my precious miracle son Tobi back at the Mountain Brook High School auditorium when he was finally able to come outside when it was springtime in 2003. Then Blake becoming part of our family as he prayed over our tiny and very sick Layah as she clung to life and then he so generously gave his time to perform her funeral. Then, Pastor Chris dedicating or blessed Luke, right next to Pastor Blake and Lindsey as they welcomed their son Liam, Now to be about to have our promised daughter Arwyn, and here's Tobi being BAPTIZED by Pastor Blake! It was AWESOME!

 So I finished out the work week with no signs of her on the move...fortunately for my boss who I knew had been on edge ever since I'd come back from being admitted at the end of June. We decided to take the boys to AL Adventure on Sunday. We had a great time and afterwards, Nana had made an appointment for she and I to go and have a mani/pedi- since I could not see my feet! It was so nice and I was thrilled to get to do this since I'd never done it before. We planned to have the boys spend the night away so we could get to the hospital early the next morning. We got to the hospital and we were ready to go by 7AM. Dad arrived and waited with us. I was more anxious anticipating the c-section than if it'd happened like Luke's where my water broke on its own and things progressed and then the c-section happened rather quickly because of me being in active labor. I don't think I felt the spinal at all. I was very scared that I was gonna feel the scalpel. I don't know why, but I just kept thinking, what if my lower half is not asleep yet and I actually feel this. It was and they all calmed me, including Matt. Then the sound. I heard her cry. The sound of her crying as they took her over to clean her off. Wow....She was here. She'd finally arrived, full term, healthy! God's faithfulness had come to fruition! Our verse

 HABAKKUK 2:3 LB : THESE THINGS WONT HAPPEN RIGHT AWAY. SLOWLY, STEADILY, SURELY, THE TIME APPROACHES WHEN THE VISION WILL BE FULFILLED. IF IT SEEMS SLOW, DO NOT DESPAIR, FOR THESE THINGS WILL SURELY COME TO PASS. JUST BE PATIENT! THEY WILL NOT BE OVERDUE A SINGLE DAY!"
 
was now here! Arwyn was born at 8:38 AM, weighed 7 lbs 10.2 oz. She was 20 : long. She was perfect. She had to go to the NICU just for a little while because she had a little fluid in her lungs from being a section baby, so I didn't get to see her until after lunch. I was still on cloud 9....but I was itching. I thought it was just from the morphine pump so I dismissed it and thought as soon as I could get off it after the 24 hours, I'd be fine. I noticed my hands began to itch worse. It was not getting better but getting worse. They began giving me medication for the itching, but nothing seemed to help, even once the pain pump was disconnected. Dermatology came by to see me and examined the places that began to look angry and decided to put me on some antihistamine medications along with the benadryl and anti itch medication I was already taking. I looked past it, trying to enjoy all these first moments with our precious Arwyn. She was so beautiful. She then developed a "newborn rash" where her eyes were all puffy and red, but we were assured that it would go away. I had vaguely remembered Luke having it for a short time, so I didn't think too much about it. Derok came up and bless his heart, tore his ankle all up as he left the hospital so Dad had to take him to the ER after leaving our visit. We were discharged from the hospital on my birthday. Although I was thrilled to be going home, I was very anxious about what could be going on with my skin. We thought it was PUPPS. As we tried to settle in to having Arwyn home, I was miserable. I couldn't get comfortable. My hands and feet, palms were on fire, stinging and itching all at the same time. The more I clawed, the more they were inflamed with raised bumps. I tried cool baths, homeopathic soaps, Sarna lotions, and the only thing that brought me any sort of relief was ice packs or frozen sponges that Matt's mom had made for me in zip loc bags that I could change out once they'd thawed, but I had a new baby, a baby we'd prayed for and waited for and here I was, with stuff slathered all over my hands and feet trying to get relief. I couldn't hold her because I was usually scratching...or pumping or trying to feed her when I could. But my dear Arwyn, she was so content, such an easy baby, not startled or upset or fussy in the least bit. Going through such a difficult time, the Lord gave her such a pleasant disposition, just as H had with Luke. Sleep for me was out of the question, even on benadryl and the Atarax I was on, on top of Claratin and Allegra. I didn't sleep but maybe an hour or two a night. I cried-a lot. I really wanted to die. I couldn't think of anything but how miserable I was. I loved this precious child but what was going on with my body and how long would this last? What I read said that this PUPPS should go away after the baby was born or a day or so after the hormones were gone, so why was it getting worse? It was spreading... Mom took me that Saturday to triage so they could see how it was getting worse. They wanted me to max out all the over the counter anti histamines before changing anything so we could make sure we knew what we might be dealing with. I cried on the way home. As we were on our way home though, there it was, a beautiful full half circle rainbow in the sky. I knew it was a sign that this would get better. He promised and He always kept His promises.

So that Monday we had an apt to see the Dermatologist at UAB. When Matt's mom came to get us, she gasped. She was not expecting me to look the way I did. The rash was now spread to all my extremities, my abdomen, chest, and now my neck and one place on my chin. She could tell I was miserable. We got to UAB and the barrage of nurses,  medical residents and attendings came in. I was in no mood to be a case study, but it didnt look like I had much of a choice. They discussed what this skin condition was that was tormenting me and decided to do a biopsy to confirm their suspicions. By this time, there were several places that had begun to 'bubble' an blister around the folds in between my fingers and several places near my stomach so they found a place near my c section scar wear they could remove a blister, a healthy piece of skin and a sample of skin next to the blister. They put 3 stitches in it after they biopsied it. They gave me a steroid shot and then called me in steroids which I would be on high doses until we could get this under control. The pain medication I was taking had not even been able to take the edge off, so I was praying these steroids were really gonna be the miracle drug.  Over  the next few days the spreading slowed but the blisters worsened. They were so uncomfortable and difficult to wear clothing beacuse anyting that touched me would ruptre the blisters...i know, gross. The doctor herself ended up calling me to confirm their suspicions. They told me that what I had was called PG pemphigoid gestationis, which is so very rare like 1 in a million literally. here is what the NIH says about it.

"Pemphigoid gestationis (PG), also known as gestational pemphigoid or herpes gestationis, is an autoimmune skin disorder associated with pregnancy. Signs and symptoms of the disorder typically present during the second or third trimester of pregnancy, but it may occur at any time during pregnancy or anywhere up to six weeks after giving birth. Although the signs and symptoms are variable, a red, itchy rash with blisters is common. The rash may occur in different parts of the body, but usually develops near the belly button and/or the arms and legs. The condition is caused by the production of antibodies that attack the person's body, leading to damage and consequently blister formation. PG is caused by the production of an antibody that belongs to a specific class of antibodies called IgG1. This antibody attaches to a specific protein called bullous pemphigoid antigen. The antigen-antibody complex, through a series of reactions, results in the release of certain molecules by special cells called eosinophils. The molecules, which are normally released in response to inflammation or infection, cause damage in the layers of the skin, leading to symptoms of PG such as blister formation "

So over the next few weeks it gradually began to dry up and heal. I was able to actually hold my precious girl and take care of my family. The tragic part of this condition I beleive is that it robbed me of nursing my sweet baby girl. Although, I've been able to continue to pump for her, she doesnt nurse. I was so miserable and always crying and trying to get comfortable no matter what position I was in and who would want to try to eat while being bounced around non stop? I know I wouldnt. So, although I'm very blessed, beyond blessed. I'm a little bummed about that because she is our last child-unless there is a miracle since Matt and I have both been 'fixed. Hopefully I will be able to come off the steroids soon. The doctor at UAB that I've been followed for this is the Director of Blistering Autoimmune Disease, Dr. Navee Sami, and boy and I glad for UAB. If you have something rare and bizaree and of course that's twice now in my life that i've been text-book rare, UAB is the place to be seen next to the NIH.

So i'm sure I've probably missed a good bit doing this update so far off, and i'll try and get back soon. With 3 kids, some issues we've been dealing with in Matt's struggles and trying to work as its gotten busier with folks moving around and the changes with Healthcare Reform (which is a whole other topic), I'm just really too busy and tired to post most times.

God is so good and I'm so privledged to be a part of a story He's chosen to write through me and my testimony thorugh struggles, loss, and life. :) I'll forever bee greateful to my God, no matter what may come.

Mika