Tuesday, March 30, 2010

Just One More Reason I Hate You, CHD...

Last night, Zachy asked me if I thought we were going to have another good Christmas this year.
I told him that sure we would
He then asked if we were going to have another baby this Christmas.
I told him that no, we wouldn't be.
He was so sad and asked me why. Then Dillon chimed in, "yes, why not?"
I had to explain to them that not all babies with CHDs live, and I could not handle losing one of them. It would just be too much.
Dillon said, "yes, but isn't it really rare to have three babies with heart defects?"
Then I had to explain that it is indeed, very, very rare...but it is also incredibly rare to have two with the same defect. A rare defect, at that.
Zachy then told me he guessed it wouldn't be a good Christmas this year,after all, not without a new baby.


Yes, CHD, we would have loved to have more kids, but you have ruined those plans for us. I hate you intensely because of that. I grieve the children we won't have, because of you. I hate you.

Thursday, March 25, 2010

Not there yet

Tuesday night, our family attended a Mended Little Hearts meeting. I've been somewhat involved in this group since moving here. It's been really hit or miss with the group because I often feel further out than most of the other families. I wanted to be involved to support people, just never got the opportunity.
Fast forward to this year. I'm right back where I started. So, we decided to get more involved in the group. I really want to be on the support side of things, and I really thought I was ready.
However, on Tuesday, the leader was talking about all the different aspects of the group. Be it support or being supported. She said we are all in different places on this journey. I was fighting tears the whole time, for some reason.
I guess I'm not as ready as I wanted to be.
It's strange, really. I feel like I'm in two different places on this journey. I no longer question why Zachy was born with TAPVR, but I do with Natalie. I no longer cry over Zachy, but I do over Natalie. I guess there are things that apply to both of them, like why did this happen twice? I should say why did it happen at all, but it's always, why twice.
I truck along, usually happy, but sometimes, out of the blue, this overwhelming sadness comes.
I just really don't know where I am. And I'm not sure I need to know. I guess I just need to be. Where ever, and however that is.

Friday, March 19, 2010

Unbreakable Bond

I have been meaning to write about this..and every day it gets better.
The bond between Zachy and Natalie is unbelievable.
Zachy tells her every day that he is so glad she didn't die, and that God let her stay with us. He truly means it.
He kisses her all the time and is always whispering in her ears.
Today, he asked me if we were going to have anymore babies.
I explained to him that I didn't know, because I couldn't have handled if either of them had actually died, and we weren't sure we wanted to risk that again.
He said, "that's why I want to protect babies. I want to be a doctor"
"oh really? A doctor that takes care of babies? Or a doctor that takes care of babies hearts?"
"A doctor that takes care of their hearts. I don't ever want a baby to die because of their heart"
This is the first time he has expressed an interest in being a doctor.
We have often asked him if he wanted to grow up and be like Dr. Bush, and the answer was always no.
Apparently, seeing what it does to someone, other than yourself, totally changes things.
He never used to really talk about his heart, but now he does.
He tells me, "me and Natalie have the specialist hearts in the family".
He loves her so deeply, and it touches me so much. They will be bound for life.
He is young, and time will tell if he becomes a pediatric cardiologist, but I can't imagine anyone more empathetic than him.

Monday, March 15, 2010

Dear TAPVR

Dear TAPVR and your faithful sidekick ASD,
I'm writing to you because they say that sometimes it is easier to talk about your feelings in writing. I'm willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don't particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I'm not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor's minds. They will do x-rays to be sure blood isn't backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone's minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I'm sorry no one informed you of their ability to do that.
I don't like you. In fact, I hate you. And I don't hate easily. In fact, I can't think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat...no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I'm so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn't know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.

Friday, March 5, 2010

Coming out of my hole

I feel like I'm coming out of a hole.
When I'm pregnant, I tend to become a hermit. I really don't know why. I don't feel depressed or anything like that, I just like to be home with my family. The kids did their play, I helped with that, and there was always church involvement, but that was about it.
We are part of a home school group that meets every Friday for park day.
Last week was the first one we have gotten to this year.
This week, we have kicked school up into high gear and are back to our four day schedule. Usually, Friday is our catch up day. So whatever they were unable to complete during the week, gets done Friday.
Today, Dillon and Matthew both have a little bit of lap booking to do, and when I say little, I mean they both have one mini book to complete...which is not a lot.
Which all means we're hitting the park again today!
Last night, we had some friends over for dinner, so I got the house all clean for that. And that means I have very little preparation for Sabbath.
It's almost like a day off today! Woo Hoo!
I do have some picking up and laundry to do, and some errands to run, but for the most part, it will be a laid back day.
I feel like things are starting to move along like they did in the days before I was pregnant and in my hole. I like it.
And once the trees start to bloom, I'll feel even better! I can't wait! I'm so envious of all the people in the northwest who are talking about flowers that are starting to peek through the ground. I miss bulb flowers so much. I guess it doesn't get cold enough here to do to the bulbs what has to be done during the winter. So for now, everything is dead. That gets old real quick.
Spring is just around the corner though! My second favorite season.
Good times are ahead! I can feel it.

Thursday, March 4, 2010

The Wait

Part 1
.Part 2


The next morning, I was dying to get to my baby. Of course, I had to wait for my doctor to discharge me. Unfortunately, I didn't see her until about one in the afternoon. She had no idea that Natalie had been transferred, and immediately discharged me when she heard.
Matt took me to the other hospital, where I was finally reunited with our sweet girl.
We didn't get to stay too long with her because the cardiologist was there and took us into a room to show us the angiogram they had done that morning. He also told us she would be having her surgery on Friday or Monday. It was Wednesday. Later that day, we were told it would for sure be Monday. The reason for the wait was to get her eating well. Apparently, feeding issues are the main reason a baby stays in the NICU after surgery.
The end of the week was pretty uneventful. Natalie looked so good that it was very, very hard for me to tell my head she did indeed need surgery.
It was quite the emotional roller coaster, that week. For one thing, I had all the post partum hormones on board, and they were swinging.
The other thing was, when you are waiting for open heart surgery, you flip between being so thankful you get to wait, and wanting it done RIGHT NOW. You know, just in case they wait too long.
I wanted to be with her every moment, in the back of my head was the thought that this could be the only week we had with her. I don't know that you can understand that. I think any heart mom can, but unless you've been there, I'm not sure you get it, completely.
Unfortunately, there was no way for us to stay at the hospital. So we were commuting back and forth. This meant we were normally at the hospital from about 11 till 6. That wasn't nearly enough time for me. While we were there, I was nursing her, and pumping. She was feeding very well.
On Saturday, things started to change.
While we were there, her O2 sats were dropping. The alarms would sound at 75 and it was going off almost constantly. Finally, they just muted it.
By Sunday they had set the alarm at 65. Her sats were still low, and her respirations were up. So in addition to the alarms for her sats going off, the alarms for her respirations was going off as well.
Being her parents, this was so stressful for us. In our minds at any moment she could crash. Although, I don't think that's how it works, but again, as her parent, that's how your mind goes.
Sunday, Matt's parents also flew in to be with us. We are so very grateful for all the support from our family, and were very, very glad they came to be with us.
Monday morning was surgery. For some reason, she was the second case, so we had to wait on the surgeon.
In the NICU, we noticed her nails and lips were blue. The nurse said it was definitely time to do the surgery.
I felt like it was almost like watching someone die. Each day, something new happened. It was really rough.
We ended going to the holding room around noon. The poor baby was so hungry and crying like crazy by then.
I was trying to hold it together. All I could think about was what if she didn't make it through surgery. And the fact that after this, everything may change. I couldn't even hold her because she was attached to several lines. I just wanted to scoop her up and snuggle with her and nurse her. All I could do was rub her head and talk to her while she cried. At one point, it was too much for me and I just had to sit down. I felt like I was betraying her, sitting there and not being with her. I just felt so helpless. I shed so many tears, and said so many prayers.
Finally, they took her back. Again with the mixed feelings. Relief that if all went well, she would be fixed. Sadness to know that if all went well, she would be hurting. And fear of it not going well. I wanted to take her and just run and never deal with any of it. I wanted it all gone.
We headed to the waiting room to wait for what would feel like an eternity.
Finally, the cardiologist came to talk to us and tell us everything went well.
The tears just poured out. I was so very, very relieved.
We would head to the PICU for a bit of recovery before being sent back to the NICU.
In a way, the ride was just beginning. We didn't know what we were in for, and it would probably be what brought me to needing to write all of this out. It was very, very difficult, but that's a different story, for a different entry.

Wednesday, March 3, 2010

Caridologist appt.

I'm taking a little break from my story to let you know about Natalie's appointment yesterday.
She weighs 11 pounds 2 ounces now. I knew once the lasix was stopped she'd start putting on the weight, and she has. Almost 2 pounds in a month! WAY TO GO NATALIE!!
She has an upper left pulmonary vein that is narrow..however, it has always been narrow. If you look at the picture, you can see that it actually attaches to the lower left pulmonary vein. It's something that we have to keep an eye on. If it gets too narrow, it may need surgery. The doctor said that since it is only one vein, if she doesn't have any issues then it may not need anything. We'll pray for that!
Also, she has a bit of narrowing at the repair site. This is the one that will be more important. As she grows, the scar may or may not grow well with her. If it doesn't, then they will have to redo things and fix that. If it stays the same narrowness (is that a word?!?!) that it is now, it should be fine. Again, we're praying for that!
In a few months, Dr Bush thinks he will probably do an MRI to see things more clearly, but maybe not.
It feels like everything is wait and see! God really must think I need to work on my patience. Who am I kidding? He's right!!
Also, Dr Bush still thinks her rhythms are good. If she needs paced he thinks it won't be for "decades and decades". I'll take that!! None of this four year old business.
So for now, we wait. Which is good. I'd rather have that then some issue that needs to be taken care of right now.
Here are some pictures from before her heart was fixed.
The first is her pulmonary veins that are clearly, not attached to the back of her heart. The vein that they are attached to, isn't even supposed to be there.
The second is just showing how much bigger the right half of her heart was. It is all back to it's normal size now, thank goodness!

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.

Wednesday, January 20, 2010

So Perfect

A friend sent this to me today. I pray my Natalie does this,

Once upon a special day,
In heaven up above
The tiniest souls sat at God's feet
Surrounded by his love.
The time was coming very soon
God said "Do not be scared"
Your family awaits your arrival
Now let us get prepared
and so.....God looked upon these souls
In mute consideration
He knew the life each one would live
He weighed each situation
The souls chatted amongst themselves
And wondered who they'd be.
They knew the day grew closer..and so on
They'd meet their family.
"How would you like to change the world?"
God asked each soul in fun
"The chance to make a difference
is held by only one."


I'm going to make the world laugh
One soul said with a smile.
For laughter heals a broken heart.
And helps us through each trial.
Then take with you the biggest smile
and share your laughter well
The soul thanked God immensely
And down to earth he fell.


And I'll remind the world to sing
A sweet little soul told the world
I have the gift of a beautiful voice .
I can hit every note, every chord
You'll have the gift of music then
A voice lovely and strong
Share your gift with others
Let them hear your song.


I will show compassion
The next little soul raised his hand
Some people only need a friend
Someone to understand
Compassion is a good thing
God said with much delight
To you...I will give mercy
You'll perceive wrong from right.

and so each soul....shared every thought
their plans their hopes their dreams
As God explained that life.....
is much harder than it seems
And as each soul began to leave
in a scurry of laughter and fun
heaven became quiet
left was only one....
Come sit with me my little child
God said with just a sigh
Do you know how many you will touch
in a world left wondering why
From the moment that your life begins
You will know strife
But you'll touch those that know you
To cherish the small things in life
and some may only know you
through a simple photograph
they'll never hold you in their arms
Or memorize your laugh
some may only know you
through the words they read each day
But you'll do something wonderful
You'll make them stop to pray
The tiniest soul raised her head up
To touch God's strong firm hand
Father I am ready for
The life that you have planned
And I will do the best I can
without a word or deed
for you Lord are the planter
And I will be your seed
She could already hear many praying
and although they had not seen her face
they were praying for her safe arrival
they were asking for mercy and grace
What talent do I leave with Lord
what gift to you impart?
All that you will need God said
I've placed within your heart
and so God kissed this tiny child
knowing all that she would be
and whispered as he watched her go
You'll teach them to see me.

Sunday, January 17, 2010

Update on Natalie

What a long week this has been. Natalie had her surgery on Monday. Surgery went well. The day after surgery Natalie did GREAT. They extubated her and we got to hold her all day. She even nursed quite a bit on Tuesday. By Tuesday evening they moved her from PICU to NICU. This was a great step. And they had said she was doing so well that she would probably be home by the weekend.
However, Wednesday's chest x-ray showed fluid around her right lung. The dr tried to drain it just with a needle, but only got 10 ccs. They knew there was more so opted to do a chest tube. As of today that tube has drained over 200 ccs of fluid. A lot of fluid for a little baby.
The day after the tube was placed the nurse let us hold her and nurse. Since then, no nurse has let us hold her. :-(
Yesterday, they told us that she now had fluid around her left lung and had to do another chest tube on that side.
Today, we found out she has chylothorax...basically the fluid she is having is lymph. So, they put her on a special formula that has a very low fat content, to try and seal that up.
At this point, we've been told she will be in the NICU indefinitely. Most likely at least 2 more weeks.
My mom and Dave are still here, and Matt's parents have been here the last week. They leave tomorrow. I have no idea what we would do without them...it is really hard trying to figure out how to divide our time between the hospital and the kids. Thankfully, Matt has taken the month of January off. It's just been really hard.
Prayers would be appreciated. She's a little fighter and I know we'll get through this, it's just a matter of time.
I cannot wait to get her home with us, and to be able to snuggle with her whenever I want.

Sunday, January 10, 2010

Natalie Grace's Birth Story

I tried everything I could think of to go into labor on my own, but it wasn't meant to be. I had been scheduled to be induced on Jan 5, and I made it to that day.
We arrived at the hospital at 5 am and got things started. I was terrified of the IV, but it was a really good placement and I did well with it. I was so proud of me! LOL
When they checked me I was still the 2 cm I had been at my last appt a week before.
I had said all along that I didn't want an epidural but that I wasn't someone who was going to let myself feel like I was dying.
Around 7 they started my pit and the doctor came in to check me. She said I was a 2 and asked if she could break my water. I told her last time they broke my water they didn't let me sit up after that, so asked that if that was the case, she not break it. But she said Natalie was low enough so she broke my water. Boy was there a lot, it just kept coming.
Matt and I started to play cards and the contractions were coming every few minutes but were very tolerable.
We made it through our game and turned on the TV. We watched a bit of the Price is Right and while we were watching that, the contractions started to get pretty painful.
The doctor had told me not to wait too long for the epi because I labor fast and she didn't want me to wait too long. The nurse said as soon as I was ready, she had filled out the paper work for the epi and she'd call the anesthesiologist. I just really felt like I could do it without.
Around 11, I asked to be checked because things were starting to pick up and I was wanting to see how far along I was to make the epi decision. I was a measley 4 cm. I thought I probably had a ways to go. I asked for something in my IV instead, just to get back on top of things.
Whatever they gave me, knocked me out. It must have been so weird to Matt, because I was out cold but every couple minutes I would wake up moaning and saying, "ow ow ow" and then I'd be out cold again. Matt went and got lunch at that time. I don't even remember him being gone.
Suddenly, at 12:30 I was in a ton of pain. My back was killing me and I wasn't sure I was going to make it through this. I was checked and was a 6. They offered me the epi, but I knew that transition was just around the corner and I'd go really fast after that. So I refused. I did ask for more IV meds because I really wanted to sleep and not deal with the pain! However, it was too soon after the first dose to give me anything.
At that point though, with nearly every contraction, I was bearing down. I couldn't help it, it was the only way to feel any sort of relief. The pain in my back was almost paralyzing. I was sitting on the end of the bed and couldn't move from that position. The contractions would just start to die down when another would come. I was crying at this point saying I couldn't do it. But I knew I had no choice. They kept checking me and it hurt sooo bad, I'd tell them they needed to get their hand out NOW. But each time I was a cm more dialated than before. Finally, they said I could push, but I got really scared. I had been pushing all along, but now was going to do it in earnest. I had so much pressure that I kept telling the dr I was going to poop on her! She said it was ok, but I was so freaked out about pooping on her! I don't think I ever did, but it was the thing I was concerned about at that time.
After pusing for about 3 contractions and 10 minutes Natalie came out, sunny side up. And it HURT. Badly. She wasn't crying so they wisked her away and Matt went to be with her. I don't remember him cutting the cord, but he says he did. I remember still being in a load of pain, with tons of burning. Finally, when the placenta came out, the pain was gone.
She was born at 1:32. It took two hours from being 4 cm to having her, not bad! She was 8 lb 13 oz and 19 inches long.
This is only the second time I've gone with no epi, strangely enough, it's been with both my TAPVR kiddos, and they both happened to be sunny side up.
I'm not sure I would recommend going without and epi in an induced labor. It is very intense and you literally go from totally tolerable contractions to 'oh my gosh I'm gonna die' contractions in a matter of minutes.
But, it's done. I didn't tear. My precious girl is here and I feel great.

Saturday, January 9, 2010

Short update

I just wanted to let everyone know that Natalie Grace was born on January 5. She weighed 8lbs 13oz and was 19 inches long.
She is about the cutest thing I've ever seen!
I was induced at about 7 AM and she was born at 1:32 PM. Once things started going, it was a pretty intense labor. She was born sunny side up like Zachary which made things incredibly painful. But, we survived.
After having her with us for a couple hours the nurse took her to be "transitioned". This is a time they give them a bath and just generally look the baby over.
During this time, the nurse noticed she was "slightly dusky" and she did a pulse ox test. Pulse ox tests are not routine, for reasons I cannot fathom. Her O2 sats were in the low 90s so the nurse called in the ped.
When Matt went to check on Natalie he was told we were waiting on the pediatrician. At that point, Matt mentioned Zachary and his heart defect, TAPVR.
The nurse spread the word and shortly the neonatologist was called in. He explained to us all the tests that needed to be run before calling the cardiologist. They then transferred her to the NICU, and we were told we would have some news in about an hour.
About an hour later, we went down to the NICU, where we were told that all the tests indicated it was probably her heart, and they were waiting on the cardiolgist to get there to do an echo.
When that was done we were taken to a conference room (never a good sign) where we were told that Natalie has the same defect as Zachary. She has unobstructed, supracardiac TAPVR. What a blow! This defect is so very rare to begin with, and it is even more rare for it to repeat in siblings.
She was then transferred to a different hospital. I had to stay the night at the other hospital, which was very hard for me. Matt went over with Natalie.
The good news is, she is in much better shape than Zachary was. She isn't even on any oxygen. She will have her repair on Monday. It is so very hard to look at her and know that this HAS to happen for her to survive, she just seems so healthy.
So for now, we sit at the hospital holding her, and loving on her. Come Monday, all that will change and we won't be able to hold her for awhile. Breaks my heart!
Please remember Natalie in your prayers this upcoming week, she could really use them!

Thursday, December 31, 2009

Still Here

I have neglected my blog so badly.
I've had such computer issues..and just yesterday sent my laptop back to the company to be fixed for the second time in 2 months. What a pain. And I'm lazy, on top of that. It's so much easier to get here when it's all in my favorites.
Anyway, I am still here. Still pregnant.
I am now 38 weeks. I haven't gone past 38 weeks since I had Dillon, 11 years ago. It's weird. My doctor would really like me to go into labor on my own. But if I don't, there is an induction date set. I'm not going to say it here, because it will be a surprise to some people who would like a surprise!
We had a great Christmas. My mom and step dad are here and it was a nice, quiet, family Christmas. Although, we are praying that next year, in Ohio, we'll get a white Christmas. It is really hard for it to feel like Christmas when it's warm outside!
The kids are done with school for now, until after the baby is born, so we've all just been hanging out playing with the new Christmas toys.
Oh, I wanted this to be longer, but Emily is wanting some attention, and I'm trying to give her lots in these last few days.
I'll update when Natalie is here!

Thursday, November 19, 2009

It is highly possible that I am the worst mother alive

I am sitting in bed, listening to Emily scream her head off.
She is with Matt, but is throwing a huge, ginormous fit.
I honestly don't know what to do.
You see, she still nurses. Yes, yes, I do know she will be 3 in March. And yes, I know there is going to be a new baby in a matter of weeks. I know all of this.
To wean or not to wean has been the ongoing question here.
On the one hand it would be really great for her to be weaned before the baby is born.
On the other hand, I do not want her to feel rejected by me. And I really don't want her to hate Natalie.
It is such a hard, hard decision. She really enjoys nursing. And I really do not at this point.
So tonight, I let her nurse to sleep, which is about the only time she nurses. But she woke up after about an hour. And not just a little. She must have dreamt something bad because she woke up nearly screaming. So, I scooped her up, and naturally, she wanted to nurse. Normally, she will latch on and nurse for just a few minutes and I can tell her that's enough and she's fine with that. Not tonight though. She just wanted to nurse and nurse. And I just wanted to crawl out of my skin. I'm reading a book about tandem nursing, and it turns out this is a totally normal feeling when you are nursing while pregnant.
I told her that was enough, and she lost it. And she's been screaming ever since. And it's breaking my heart. I'm not sure what we are trying to accomplish here. All I know is I don't want to nurse her right now.
How selfish. She needs comfort and all I care about is my own comfort.
See. I told you..worst mother alive.
This all sucks. Really, really bad. My mother would tell me that she has told me all along to wean her, we have just really struggled with if that was the best thing for her. It's funny, because my mom likes to spout off about me weaning her, she has no idea what we have been going through regarding the whole weaning issue. It isn't one we are taking lightly, it has been a source of major stress for us for some time. It's hard to know what the right decisions are when it comes to our babies!
I need a fairy godmother to come wave a wand and make this all better. *sigh*

Friday, November 6, 2009

Where is my music?

Do you hear my wonderful Christmas music???
I don't even see the box. It's in the html but it isn't showing up to me. Where did it go???

My head hurts

Matt has been in New Jersey for the week. He is coming home tonight. He can't get here quick enough.
It has just been a very trying week. Several things have gone wrong. The kids have been trying my patience. And well, I'm just tired.
My head is killing me this afternoon and I'm trying to decide what to do for dinner. I'm thinking maybe fast food, because I just don't have it in me to do much else. Maybe Taco Bell, we never eat there. Or Arby's.
Matt bought me a gift certificate last Christmas to be used for a massage. I found a place where I can get two 45 minute massages for the price of the gc he got me. I was wanting to do one next week on veteran's day because Matt has the day off, but we'll see. For some reason, I'm a bit nervous to make the appointment. Mainly because I know nothing about the place (though it got good reviews) and because I've never had a massage. I keep thinking that the people will take one look at me and think, "oh heaven's NO..I am NOT putting my hands on HER!!"
Anyway, Matt comes home tonight, but I won't see him much this weekend. He is doing and evangelistic series at church. I'm really proud of him for this, but meetings that normally are spread out over several weeks, have been condensed into two weekends worth of all day long meetings.
Next week the kids' play start. They have practice every night then the play starts Thursday. Usually, one of us takes the boys and the other stays home with Emily. If we do that, it means more time to not see him.
OK this was a really whiny post, I'm sorry. I'm just spent right now and felt the need to share that with all of you!

Tuesday, November 3, 2009

Birth Announcements or No??

Originally, I had planned on not doing Christmas cards, and just sending out birth announcements with the required picture and letter.
And I've been thinking lots about announcements and what I want them to say.
But then, I got to thinking...should I even do announcements?
I have always done them, but wonder if people get them and think, "oh, Matt and Bekki had another baby, big surprise". I also wonder if people think we send announcements to get gifts. This has been an issue for me for several babies. I do not want people to think they need to send anything, we send announcements to share our excitement with them, nothing else.
Then there is the issue of making them. I have made all the other announcements, but am not sure I want to do that this time. But since I've done it five other times, would it make sense to change now? Assuming I even do them!
AAAGGGHHHHH, who knew birth announcements could create such a dilemma for me??
I realize this entry makes very little sense, and is quite grammatically incorrect, I'm just trying to figure out what to do.

Saturday, October 31, 2009

Update of sorts

I know it's been forever since I wrote anything significant. I just get in these modes where I just don't have it in me. Besides, it is so much easier to just throw a status update up on Facebook than it is to post here.
The first big update is on Zachy. Last I wrote the nurse had called concerned about some fast rhythms he was having. When we saw the Doctor he wasn't concerned at all. He said it registered as too high on the equipment because pacemakers aren't made for children. So what is a normal active rhythm for a child is too high for an adult. So all is well with Zachy. Thank goodness!
Matthew has been saving his money for a very long time, and yesterday was finally able to buy himself an iPod. He got the nano which has a camcorder on it as well. He has been taking videos all morning. He would probably be just fine with it even if it never played music. He loves making videos.
Their play is in two weeks. I will be glad when it's done. We love it, but by the end it is always nice to be able to stop making the drive twice a week. It's hard because the practices are 1 1/2 hours on Thursday and 2 hours on Sunday. Well, it is far enough away that by the time you turn around to go home it would be time to turn right back around to pick them up, but too long to just sit there. Although this year, I've been helping make the costumes and Matt's been staying home with Emily.
As far as the pregnancy, this has to be the easiest pregnancy I've ever had. In the beginning I was really sick, but since that has passed I have felt great. I'm 29 weeks and time is still flying. Natalie will be here before we know it.
Other than that, we've just been busy doing yearly eye exams, doctors visits for me, and dentist appointments. Oh yes, school too. Which is going great.
I wish this entry had been more entertaining, but alas, that's what happens when you wait so long in between entries! Sorry.
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