Friday, February 19, 2010

The Discovery

Part 1



The morning of January 5, 2010 couldn't get here soon enough. I was suddenly tired of being pregnant, but probably more excited to finally meet our little girl. Interestingly, Zachary's birthday is August 5. We would soon come to realize all the similarities that were about to be. They would share more than just a number.
We arrived at the hospital at 5 AM. I was so afraid to get my IV. Strangely, I fear the IV more than anything else in childbirth. They took me to my room and made Matt stay in the waiting room until I was settled. I had to get my IV without Matt there to hold my hand. Thankfully, it was the best placement I'd ever had and it really was pretty simple.
The induction was started, and everything progressed as expected. I told the nurse when we started that my baby was posterior. She said we would see. I could tell though, by the movements I'd been feeling that she was facing the wrong way.
I managed to get through my sixth induced labor without an epidural for only the second time. The first being with Zachy.
As she was coming out, the doctor said, "oh, there's her face!" and the nurse asked how I knew she was face up. She was pretty surprised that I was able to tell her that. Zachy was my other sunny side up baby.
I have no idea how it came to be that with these two I didn't do an epidural. I'm sure their births were more painful than the other four together. And yet, I was determined, both times.

Natalie Grace was born at 1:32 PM weighing 8 lbs 13 oz and was 19 inches long.
When she came out, there was no putting her on my belly. They whisked her away to the warmer. She wasn't crying. I've had another baby not put on my belly because he wasn't crying. Guess who? Yep, Zachy. I'm not sure how, but they gave her apgars of 8 and 9. They got her crying and finally brought her to me. At which time I tried to nurse her. But she wouldn't latch very well. The nurse told me to go skin to skin with her to help. It did help, a little. If you're thinking that I probably had this problem with Zachy..you would be right!
Since I had had no epidural, I was able to move from the labor and delivery room to the post partum room pretty quickly. The rooms are on separate floors, and in the elevator I told Natalie that she was such a good girl. She was breathing so well and I told her she would be our baby to avoid a NICU stay. Several of the kids have grunted when they breathed and had to be checked over in the NICU, but she wasn't grunting. I was so happy!
We went to our room and Matt started calling people. He was holding her, and she wasn't wrapped in her blanket. I noticed she was a bit blue, and told Matt she must be cold and to cover her up. Right about that time, the nurse came in to take her to the nursery to transition her.
At the hospital I gave birth at, they take the baby to the nursery to give them their first bath and just check the babies over. She said it would take about an hour.
An hour came and went. Matt was still calling people. I was having quite a bit of bleeding, and asked him to please go check on her. He said we could wait for awhile, that they would bring her back, or tell us if something was wrong. More time passed and I couldn't take it anymore, I told him he had to go check on her. This time he went.
When he came back, he informed me that the nurse noticed that Natalie was a bit dusky and did a pulse ox and her O2 Sats were low. I would later come to learn that they were in the low 70s mid 60s. She had put blow by oxygen in her crib and had called the pediatrician. He then asked if I thought we should tell her about Zachary's heart. I said of course we needed to do that.
The next time he returned he said the plan had changed. The neonatalogist was now coming instead of the pediatrician.
The neonatalogist came and talked to us and said he had to take her to the NICU and run several tests to see if we were dealing with her heart or something else. He talked to us for quite awhile about different things that could be wrong, but it is all a blur to me.


We went with him to the nursery to see her before they took her to the NICU. Also, our kids had just arrived at the hospital with their grandparents. They saw Natalie through the window before they took her away. During that visit, the doctor told us we should have some answers in about an hour.
The kids went home, and we waited. An hour passed and we headed downstairs.
I will never forget walking into the NICU that night. The doctor was a retired military doctor and this was his first night at this hospital. As we walked in, I overheard him talking with the nurses about where they transfer babies to. I felt my face go white and turned to Matt and said, "they're transporting her". Matt said we didn't know that for sure.
The doctor then came and said the tests indicated that it was her heart, and the cardiologist had been called in. My heart sank. I think at that point, though I didn't want to admit it, I knew exactly what was coming.
Right away, the cardiologist was there to do an echo. He introduced himself and then asked us to leave and wait out in the hallway while they did the echo.
We made our way to the hallway to wait. What a long day of waiting it had been.
We tried to make small talk, but we both knew what was happening.
At one point I said the echo was taking too long, and that something was wrong with her heart, but surely it couldn't be TAPVR. I hoped and prayed it was something simple.
After what felt like an eternity, a nurse came out to the hallway and announced that the doctor wanted to speak to us in the conference room. Just so you know, if a doctor wants to talk to you in a conference room, it's usually not good.
I'll never forget the doctor coming and the words that followed.
He said, "I understand you have a son with TAPVR"
"yes," we answered.
"Do you know what type he has"
"yes, supracardiac".
*sigh* "That's exactly what we found with your daughter."
I knew it was coming..I did..but I still felt like all the wind had been knocked out of me, and that this was a horrible dream.
How could this be happening again?? As the doctor continued to talk I just kept wondering why and how. I have no idea what else he said. I was dying inside. I wanted to rewind the day. I wanted her back inside me, where she was safe. I wanted a do-over. I wanted anything but to be sitting there listening to this. I was holding tight to Matt's hand, probably tighter than while I was in labor. And as strong as I tried to be, the tears were just flowing..silently. He kept talking..I remember thinking, "please, just let me go be with my baby". I do know he was talking about how unusual this is, that he's never seen TAPVR repeat in siblings, that this just doesn't happen.
But it does happen.
And it did happen.
And a piece of me died.
I was changed when we went through this with Zachy, I didn't realize I'd be changed even more, but I was. I haven't decided if it is a change for the better or worse.

Finally, we got to go be with our sweet, sweet girl. The transport team was already there, but bless them, they just hung out for awhile and let me hold my baby. For that,I was very grateful.


Sending her to a hospital away from me was so hard.
It came time for her to go. I didn't want to let go. Somehow, I managed.
Before they took her, I had Matt take some pictures of her. I knew there would be very, very few pictures of her without a scar on her chest. For the rest of her life.


We headed back upstairs to my room so Matt could get his stuff and follow Natalie.
My nurse asked me how it went. We had to tell her it wasn't good. She said, "lucky for you, you have a nurse who believes in the prayer. And you have a nurse who serves a God that answers prayers." I will never, ever forget that. I can't remember her name, but I will never forget those words.
I truly believe that had the first nurse not decided to do a pulse ox test on Natalie, she would not have been diagnosed when she was. She seemed so healthy.
Matt left, and I was alone. What a horrible feeling, to be in a post partum room, and have no baby with you. It was just me and facebook.
I didn't sleep that night. I don't think Matt did much either. He says he did, but I know him, and I don't think he did. We knew what was coming, and it wasn't pretty. Our baby girl was fighting for her life. We know people who have lost their babies to TAPVR. We knew..all to well..what might be.
And there wasn't a thing we could do about it.
Except pray. I am eternally grateful that we serve such a loving God. A God who cares what happened to our baby. And a God who held me up, when all I wanted to do was fall into a pit of despair.
Yes, through it all, we knew...God is good.

The Birth Story

Tuesday, February 16, 2010

The Journey Begins

On May 7, 2009, my husband, Matt, and I learned that we were pregnant for the seventh time. Much to our surprise. It was definitely a pleasant surprise, but a surprise, nonetheless.
You see, for only the second time in our married life, we were actually trying to prevent a pregnancy. Not that we didn't want another baby, but we were planning a family vacation to Walt Disney World, for two weeks in May.
Back in July of 2000, we went to the World and I was six weeks pregnant. Upon returning home, I miscarried. It was devastating to lose one of our precious babies. I did not want to go back, pregnant. I didn't want to worry the whole time, and I certainly didn't want a repeat of the last time.
But, there's always a but, one night, we threw caution to the wind. And as they say, it only takes one time.
We were leaving on our trip May 9, and my period was due to start on the 10Th. I didn't expect to be pregnant, but thought I would test..just in case. Lo and behold, two gorgeous pink lines. Six really, because I had done what any good woman does, and bought a three pack of tests. I'm not one to let a test go to waste, so I used all of them. And they all told me the same, wonderful news.
The next morning, I woke up to use the restroom and was greeted by brown spotting. I was so scared we would lose the baby, but had no other choice than to just go about getting ready for our trip. Thankfully, I knew that brown meant old blood and I just might be OK.
We left on our trip, excited but scared.
On the way over (we drove) there were all kinds of pro life signs talking about when a baby's heart beats. Matt and I had fun counting how many days pregnant I was, and determined our baby's heart was indeed, already beating.
Although we were nervous about telling the kids, we knew we had to tell the eldest two, at least. We normally wait for awhile, just in case we lose another baby, but with me not being able to ride the rides, we knew they'd wonder what was up. We ended up telling all four of the boys in the pool once we got to our condo. They were all so thrilled.
We spent two weeks at Disney World. The first was excruciatingly hot, the second, it poured. Not only did it pour, but morning sickness hit with a vengeance that second week. I felt pretty miserable, but took it as a great sign that this baby was going to stick around. There had also not been anymore spotting since the first incident.
We came home and got back to life. Which for me, meant setting up appointments with my OB and the Perinatalogist.
I am considered high risk because my fourth son, Zachary, was born with a complex heart condition. It is called TAPVR, and it happens when the pulmonary veins do not connect to the heart correctly. He had open heart surgery at less than 72 hours to correct it. I also have a minor blood clotting issue, and I take baby aspirin throughout my pregnancy.
I see the peri for monthly ultra sounds to check the blood flow to be sure there are no clots. Also, to check the heart.
I was in the peri's office by seven weeks. That was when we first met baby Tarzan. We called her that because Zachary always asked if we could call our next baby, Tarzan.
It wasn't long though, until we discovered that Tarzan, was a girl. Our second daughter. How God had richly blessed us!
Around 28 weeks, I had my fetal echo cardiogram. The doctor looked long and hard, and said she saw at least two pulmonary veins, and they appeared to be draining into the left atrium, like they were supposed to. What a relief.
When I was pregnant with my number five, Emily, I was very stressed out. I was so afraid she would also have TAPVR. But she didn't, her heart is perfect.
This time around, I prayed endlessly for strength. Not once did I pray for our baby's health. I just prayed for strength to get us through whatever may come. I felt, somehow, that something was wrong. At a brunch I attended with my women's ministries group, I confided in my pastor's wife that I knew something was wrong with my baby. I told her whatever it was, it would be OK, because I knew we could get through it, but I just had a feeling something was wrong.
Appointment after appointment, the peri declared our baby healthy. And we were at such peace.
In fact, this pregnancy was a piece of cake. I felt great, until the very end, and even Matt commented on how great I seemed to be feeling. Most of the time, it felt totally surreal that I was even pregnant.
That all changed right around 36 weeks. Suddenly, I just became really uncomfortable, and ready to meet our baby. We couldn't wait.
Oh how I had wanted a Christmas baby. It wasn't meant to be, however, and my doctor scheduled me to be induced on January 5. I was due January 14, but because of the blood clotting issue, the doctor likes to induce me early. And, as bad as it sounds, I'm totally OK with that.
My mom and step dad came down at Christmas time to be here when our newest baby was born. Little did we know, just how fortunate we were that they were here.

Wednesday, February 3, 2010

May be changing things

So, I've been having a really hard time dealing with all that has happened.
I just had my post partum appointment where we talked about depression. The doctor is convinced that I will come out of this on my own as Natalie continues to improve. The plan for now is to go back in a month to see how I'm doing. I decided I would start writing again, telling my story. Sort of a type of therapy for me.
The only problem I'm having is where to start.
I keep thinking of totally changing up my blog and making it just my story. I do all my updating about the kids on facebook anyway. But then, my story could get old. And again, where do I start? And do I tell my story as if to someone who knows nothing about us? I need to think about what would serve as therapy the best.
What is important to know, is that Natalie is currently doing well. Things were just so crazy. She is still on the formula, and I'm still pumping and praying that someday she'll come back to breastfeeding. I think when that happens I'll feel much better. Oh, and she is home. All our family has left, and Matt has gone back to work. The kids started school this week, and we are just trying to get life back on track.
As for me, I'm in an angry phase. Not angry with God or anything, just angry. I'm so so mad that this has happened again. I need to get through this, hence the reason for my writing it all out.
If you have any great ideas for how to begin writing, please let me know.
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