Ella Grace: Where Do I Even Begin?!

Note: I'm sorry this post is so long. I also apologize for the choppiness & poor writing...I only have so much time to write...this took me all day! ha! So, If you have time to read a poorly written novel, proceed...

This little angel girl has taught me more about being a mother in a few short days than I could have ever imagined . I have learned:
1. how powerful a mother's love is, even when she has only just met her child. I've been amazed at how deeply my heart could break over someone I've just met.
2. that you have to fight for your child, and be her voice and her advocate because no one else will care the way you (and your spouse) do
3. a lesson in compassion
4. a greater understanding of what a blessing it is to have a healthy child


I suppose I'll start from the beginning: the birth story!
My water broke at 9 PM on Saturday, September 17...at least, I thought it was my water. I called the doctor, arranged for Julian to stay at my friend's house, and we headed to the hospital. Yes, my water had broken, but I was only dialated 1 cm! However, there was meconium in the amniotic fluid. This terrified me. I always thought that if your baby passed his/ her meconium while inside you, it was time to get that baby outta there, and fast. But no one seemed to be worried. So I called my brother, and he reassured me that all was well. He told me it was fairly common, and as long as Baby's heartbeat was strong, we had nothing to worry about.

Since I'd given birth to Julian without any pain medication or an epidural, I decided to give an epidural a try to be able to have that experience too. I agonized over this decision my entire pregnancy, & I only came to this conclusion the day before going to the hospital. I was able to make this decision only after multiple reassurances that the epidural stays in the spinal column and doesn't get to the baby, & thinking about how my mom didn't have one with her first three kids, but she did with my little sister and I & how she raves "Kimberly, the epidural was the BEST decision of my life!" And talking with all my friends who've had them before who say they'd do it all over again. So while I loved the experience without an epidural, it was NOT EASY and I figured "why suffer again if I don't have to?"

So finally I came to my decision the day before I gave birth, and I was firm and confident in it. I felt good and excited about it! I kept asking for it all night, but never got it. The nurse said my midwife wanted to see if I'd progress to about a four, and then I'd get it. Plus, the anesthesiologist had gone home. Well I was in agony all night. I could not sleep. So...finally I got my epidural at 7 AM...when I was already dialated to a 9. My midwife asked me at that point if I was sure I really wanted it, because I was almost done. I said YES! haha. I said "I do not want to feel that dang 'ring of fire' again!"

So the anesthiologist, Dr. Yao, came in and shot me up and I felt immediate sweet relief! And then I passed out! I was sleeping, but still conscious of my surroundings. On a scale of 0 to 5, 0 being wide awake and 5 being dead asleep, I was probably at about 3 and 3/4 asleep. I was in an exhausted and blissful state.

Both of my actual birthing experiences were beautiful, and I'm glad I know what both drug free and epidural experiences are like. But I was much calmer, able to focus, and READY to hold & bond with my baby after the epidural. (Now, this was just my experience-- I know it is different for everyone.) So, if I had to do it all over again, yes I would get the epidural! (Next time: I want it earlier though! ha!)

The midwife and nurses came into deliver Ella Grace at about 9 AM, and laughed and said something like "we've never had a mom be asleep during delivery!" They let me rest for a few more minutes, and then came in and said it was time to meet our baby girl!

I pushed for four 10 second counts and she was out! But she gave us quite a scare right after she was born. Can you imagine birthing a baby, that moment you've been waiting for for 40 weeks, there's excitement and joy in the room as you anticipate her getting placed directly on your chest so you can hold her, calm her, & tell her how much you love her. The nurses and your husband cheer you on as you give that final push that brings her into the world, and you hear nothing. but. silence. She's not given to me right away as agreed upon with the nurses earlier. I turn to my husband and fear grips my heart when I see the worry on his face, and I can only manage to get out the words "why isn't she crying?" over & over again as I cry. The tears in Stace's eyes and worry on his face (that almost looks like he is going to be sick) do not provide the usual reassurance my husband is always able to give to me so freely and sincerely, and so I continue to cry as the nurses, midwife and respiratory therapist work frantically to get her breathing. There's a nurse to my right watching the clock intently, calling out how long it's been since she's been born and not breathing.
Finally, after the longest two minutes of my life, that blessed sound of my daughter's first cry fills the room, and I smile a sigh of relief. Everything's fine now. This love I feel resonating between my husband and I for each other & for this new, precious life we've created makes everything seem perfect. At that moment, I couldn't have been happier. What a roller coaster.




(We rehashed and relived that situation after she was born over and over again with each medical professional who would talk to us-- including a specialist this week-- to calm our fears that the time she didn't breathe wouldn't have any long term effects on her. All of them say that since her Apgar went up to a 9 at 5 minutes (up from a 1 at 1 minute), since she's been feeding vigorously from the get go, and her diapers need changing (VERY) regularly, that she is perfectly fine! My brother said it was a real blessing that she didn't cry, because then she could have aspirated the meconium into her lungs, and developed pneumonia. Side note: this happened to a friend of mine's baby here in Gainesville, and he was in the NICU for 2 weeks. Now he is a handsome and clever little 3-year-old boy!
Since that was a very emotionally traumatic experience for me, and I truly feel & believe that the doctors are correct in their assestment of her being just perfect, I really don't like to talk about it. It was really awful. The pediatric specialist we saw this week (for something else) assured us "Babies are amazingly resilient. Think of how many babies have been born without all of the medical care, that turn out perfect." And even the babies that have to be in the NICU for weeks or months on end, that turn out just fine. True...ahhh...sigh of relief...)

On Wednesday I kept reflecting on how strange it was this time around to bring a new baby home & to not feel as though my life was just turned upside down...that life hasn't completely changed. That was definitely a huge feeling I had after Julian was born. "That's because you're already a mom," my mom said. That made sense.

Thursday, four days after she was born, she woke up with lots of gunk in her eye. I worried that she had pink eye. I called the doctor and they said I just needed to keep it clean, and if it still looked bad on Monday to bring her in. I hung up the phone, but that response did not sit well with me. I called them right back and told them I thought she needed to go in that day. So I took her in and found out it wasn't pink eye, but actually she was born with a blocked tear duct. But her eye was really swollen and infected. So they prescribed medicine for us to apply twice a day for seven days. It cleared up really beautifully a couple days later, though we still had to remove gunk throughout each day. But I kept thinking "what if we had waited until Monday!?" It would've probably been very uncomfortable for her, and just gotten more infected. Why wait for a problem to get really, really bad before trying to remedy it? ugh.

When I got home from the doctor, Julian woke up from his nap with the third fever of his entire life. Ah!! really? The week I bring a newborn home from the hospital? My mom took care of him and gave him medicine while we tried to keep a safe distance between him and his baby sister.

Stace gave Ella Grace a blessing Thursday night before we went to bed. I wanted him to give her one because of her eye, and because of Julian's fever. This was her very first priesthood blessing. Among other things, he blessed her that she would know and feel that her parents love her very much, that her body would be strong & would be able to withstand any sickness Julian had & that her blocked tear duct would go away & get better & withstand infection. At the very end, he blessed her that her "mental capacities would be fully functioning" and that she would "grow to be smart and quick."

I thought that was sweet & special of Heavenly Father to inspire Stace to throw that last bit in there, but didn't fully appreciate why He would have until later.

Friday I got a call from the pediatrician's office. "What could this be about?" I wondered as I called back. "Ella Grace's lab results from the hospital for PKU came back abnormal, so we need her to get retested." What?! I had no idea what PKU was, but I went straight to the doctor, got the lab slip and went to the lab. When we got there, the lab tech also said she was getting retested for her TSH levels. So two diseases? I was so confused. Stace arrived right before they started drawing blood. I was so glad he was there because I couldn't hold it together. I bawled right along with Ella Grace, while Daddy was strong as he tried to soothe her for the worst 45 minutes of my life as they squeezed (and squeezed) two viles of blood from her teeny tiny little heel.

I didn't know what either disease was, and didn't have time to look it up before leaving for the lab. So after she was done drawing the blood, I asked the lab tech what PKU was. She casually said the words "mental retardation" and I froze with shock. Did she really just say that? Stace looked up TSH (thyroid stimulating hormone) and saw that Ella Grace's lab results pointed toward a disease called hypothyroidism...which could also lead to mental retardation. We drove home separately and I was seriously hysterical. When I pulled into our driveway, Stace had to almost pull me out of the car, as it hit me: "it's my fault! If I hadn't gotten the epidural, I wouldn't have fallen asleep! and she would have come right out and breathed!" I told him I just wanted to die. He held me and kissed me and said "Kim, it's genetic!" PKU occurs from a recessive gene from both the mother and the father, and it's a 1 in 15,000 chance. Once you have a child with PKU, the odds of your next child having it goes up to 1 in 4. Hypothyroidism isn't genetic, but it is a result of the thyroid not developing properly while the baby is in utero. In the back of my mind, the words from her blessing just the night before kept trying to reassure me, but I couldn't stop crying & worrying. The lab tech's words "mental retardation" kept replaying in my mind, & I couldn't make them stop.

The lab tech said we'd likely have the TSH results back that day, but the PKU results would take several days. So I waited all day, and when I hadn't heard from anyone at about 4:20, I started making phone calls. My pediatrician's office didn't have the results. They basically just told me to be patient. Riiiight. So then we called the lab. The lab tech said "I'm not supposed to tell you this over the phone, but I'm going to go ahead and tell you. Her TSH levels are HIGH." Her tone of voice when she said "high" indicated they were very high. She said she was faxing the results to the doctor right then. So I called back at 4:55. They still hadn't gotten them. The nurse told me she'd call me first thing Monday morning, and told me not to stress. Riiiight.

One of the worst parts of all of this was that it all happened on a Friday. So that meant we were alone with our thoughts and GOOGLE until we found out the results. I kept thinking over the weekend what a cruel trick my mind had played on me, if she did have one of these 2 diseases, thinking life hadn't completely just changed...

Last weekend I started out my journal entry like this: "I keep feeling like I should write down my feelings today, but part of me desperately doesn't want to because I never want to remember how I've felt again. I want to pour my heart out onto the pages of a book, as if somehow doing so would expel the heartache, lock it up and throw away the key.
On one hand, my joy has been so full. I have been blessed with this beautiful, angel, baby girl. She is so teeny tiny and perfect. She has a full head of blonde hair, the cutest little button nose, the SOFTEST back, and the skinniest little chicken legs- I'm so in love with these fragile little legs! On the other hand, my heart feels as though it can't quite take much more worry and pain. Fear of what could be tries to take over, and being a brand new mom to this brand new angel who I'm just getting well-acquainted with, the fear keeps winning and the tears won't stop coming."

Friday night, Stace was so sweet. He kept hugging me and trying to tell me everything was going to be alright. Then he said "we are going to watch a movie and eat ice cream, and we are going to find the girliest chick-flick ever created!" And that we did.

We prayed and prayed, and asked our families to fast on Sunday. Stace's dad came by on Sunday evening and he and Stace gave Ella Grace another priesthood blessing. It calmed my fears, but I still was having a really hard time. Thankfully, Aunt Candace took Julian home with her on Friday to let him recuperate from his fever. He stayed with Stace's family that weekend, and I was so grateful because I would never want him to see me in the state I was in last weekend.

On Monday we found out her levels were still high, so the pediatrician's office said they'd be referring us to a specialist: a pediatric endocrinoligst at Shands. The nurse said she'd give them a call and fax them the referral (which they needed before any appointment could be scheduled) and told me to wait for their call. I asked if I could just call them, and she insisted they would call me. UGH. fine. I waited and waited all day. Nothing. Agony. Eternity.

That afternoon Stace and I decided to go see the numbers for ourselves. So we went up to the pediatrician's office and asked for a copy of her lab results. Don't even get me started here. I am just going to copy and paste the email I wrote to my family on Tuesday:

Stace and I went to the pediatrician's office yesterday afternoon to collect her test results so we could see the numbers for ourselves. Upon viewing the results and asking questions to the staff, we learned Ella Grace's PKU levels were never an issue and they were within normal range from the get-go. UGH! That was a lot of worry and tears over what turned about to be nothing. SERIOUSLY!!!!???? But thank goodness! This left us with just one disease to worry about, having to do with her TSH (thyroid stimulating hormone) levels, which appeared to be high, which would indicate hypothyroidism.

We also found out that our pediatrician's office never faxed Ella Grace's results/ referral to Shands (no wonder they hadn't called me all day). On top of that, they never scanned her results into the computer, and they just ended up going into the recycle bin. So after digging the results out of the trash right in front me, they faxed them yesterday at 4:45 PM, and we called Shands directly afterward to make the appointment. The earliest they could fit us in was this Friday, though we'd read that treatment for hypothyroidism should begin in the first week of life. We decided this morning that was too long of a wait, so we collected her records in their entirety from the hospital where she was born, and went to Shands pediatric endocrinology office unannounced, hoping to get a moment with a specialist to let him/ her see Ella Grace's results and tell us what to do.

Thankfully, the receptionist at the front desk was kind and took Ella Grace's results to a doctor. She came back two minutes later and said the doctor would see us today...right then! We were so grateful! We then saw the sweetest doctor I've ever met (aside from my brother Chris, of course!;) who really took her time with us, and was so compassionate, although we'd showed up without an appointment. She explained the numbers to us: anything above a 4.5 TSH level is considered high. However, they spike 48 hours after a child is born (to around 50), and then continue to drop until they get to below 4.5 in a couple days. Ella Grace's labs from Friday showed her at a 7. Today we learned these numbers can be all the way up in the 100's, so while a 7 is above normal, it's not incredibly worrisome. She ordered another lab to see if they have continued to fall since last Friday, and she felt confident this would be the case. If the numbers are a 9, 10 or above, we'll do one more draw, and if they still haven't fallen, then the doctor said we'd start treatment. >end of email

Blood draw on Tuesday. They couldn't get enough out of her heel, so they had to stick her arm, too:(
On Wednesday we found out her levels had dropped to 5.1! Yay! The doctor was very optimistic because they are trending downward, though her levels are still above the normal range. She told us to take Baby Girl back in for another lab in ten days just to be sure, but that she is confident they will be within that normal range. We are confident this will be the case too, and we are so grateful. And SO relieved!

Wow. That was a long post.

So back to what I've learned from our sweet Ella Grace so far:
1. self-explanatory
2. thank goodness there are people out there who will care and be compassionate, but sometimes you have to really search and search until you find those people. I am so grateful we found those people in the receptionist and in the pediatric endocrinologist that we met at Shands.
3 & 4. sitting in the waiting room at Shands and looking around, it hit me: what a blessing it is to have a healthy child. We take it for granted so easily. Health is probably one of the easiest things to take for granted, but perhaps one thing we should strive more so than almost anything else to not take for granted. Looking around that room, I saw so many children who were sick. It hit me: my baby is not the only baby who is (so I thought) sick. But that's all I could think about then. Poor babies, poor mothers and fathers who deal with illness every single day of their lives. It made me want to be able to do something to help, but I have no idea what. For now, I look at this precious baby girl of mine and realize I need to be more thankful for the blessings I am given, and that I should probably get on my knees now to thank Him for seeing us through the last few AWFUL days, and keeping our angel girl safe under His watchful eye.

We are so blessed.