big family, big dreams, big fun
7:00 am – Mommy’s “wake up to pee” kicks
9:20 am – morning exercise
11:00 am – kicks and wiggles
1:15 pm – after-lunch happy dance
3:15 pm – soccer practice
6:00 pm – “Daddy, I’m home!” dance
9:00 pm – evening excercise
11:15 pm – “last dance” for the night (that Mommy knows of!)
Sometimes he likes to change it up, but this is his regularly scheduled programming.
Just a quick note to say that my little man has been all wiggles this weekend. I wonder if he’s trying to roll over; bless his dear little heart. I love feeling him move around!
Always a dangerous thing but we have to do this.
I had an OB appointment today. Our doctor was nice enough to read the letter that they sent to her from Philly. We got another missing piece of info… Gabriel’s heart is perfectly normal! YAY! In my mind this makes the chances for a live birth much much greater.
The plan from here is for Brian and me to talk and decide when we want to schedule the c-section. Dr. M is going to check with the hospital to see how early we can deliver – even if we decide we want to wait until 39 weeks – just so she knows. Then we will work on our birth plan so that we can be sure that all of the care team is aware of our wishes. It’s hard for me to grasp that only 8-10 weeks from now we will be meeting our baby boy. And we quite possibly could be saying goodbye.
So, that’s where we stand today. Please pray for us as we face these decisions. Pray for clarity and guidance on the timing and the plan. Pray for our hearts and minds and that we would not lose hope. And PLEASE continue to pray for a miracle of healing.
Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!
Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!
First – we survived the first week of kindergarten. By we I mean Brian and me. Chloe had a great time!
I had a hard day yesterday. We were cleaning out our room in what seems to be a constant preparation to sell the house. We were taking boxes out to the garage but kept the last one inside. This was Felix’s box. I can’t stand that all of the tangible memories I have of my son now sit in a cardboard box. I decided to go through it because it had been a long time since I’d looked at it. I took out the measuring tape the nurse used to measure him and the teddy bear she took his picture with. (so tiny) I smelled the teddy bear and wow, smells really bring back memories. I started to cry. If I closed my eyes tight enough it was like I was smelling him. I know that may sound weird but don’t we all love to smell our babies?! [Read more…]
My oldest starts kindergarten tomorrow. She’s never been to daycare and my mom has been her preschool teacher. I’m a little nervous about leaving her with strangers but she is totally excited about it. A big milestone to celebrate.
Other big milestones to celebrate: she has her own blog and recorded her first podcast tonight. Look out world – here she comes!
Reality is sinking in. That does not mean that hope is floating away.
Since our appointment at CHOP I think that I’ve finally allowed myself to begin to really grieve for Gabe. In some way I think that I was so convinced that we would go to Philly and everything would change – that we would find out our docs were wrong. They weren’t (which is good and bad). I want you to know that I have cried a lot since we got home and I’m not looking at that as a bad thing. I am not always strong and confident and okay. I need to grieve the loss of a “normal” pregnancy. I need to grieve for my son. I need to let the emotions out and let reality in so that I’m not allowing my mind to fool me into thinking that nothing is wrong and everything will be fine. Fortunately, my heart has stepped in and allowed God to speak and say that this isn’t over and that He is holding us through it.
I read a great book this weekend called “Waiting with Gabriel” by Amy Kuebelbeck. She wrote about carrying her son to term with a fatal diagnosis and the short, precious moments of his life. It brought up my memories of Felix’s death and delivery and our time with him – all of the sorrow and joy in meeting and saying goodbye to our little boy. Then I became overwhelmed with sadness in this one moment and all I could think was “God, please don’t make us do this again! Please don’t ask us to bury any more of our children!” I really don’t want to choose another outfit or casket or bouquet of flowers for a baby’s funeral. I don’t want to only have a few hours with my son and then have to say goodbye; sending him off with strangers to some refrigerator to wait until it’s time to put his body in the ground. Can you hear my heart crying out? I want to keep Gabriel. I want to raise him and watch him grow. I don’t want my children to lose another brother.
So, while we all keep asking God for healing for Gabe, Brian and I are preparing ourselves for the worst. We are going to be working on a birth plan and we’ll also need to meet with the funeral home to get those details worked out before we’re in a complete mental and emotional fog. And somehow – without dashing the kids’ faith and hope – prepare our little ones to go through this with us, again.
Thank you for your love and support and prayers. It means a lot to us.
First, let me thank you all again for covering our family in your prayers. We really have felt at ease.
Now, for the news. The news is… the same. They confirmed the diagnosis and, worse yet, the anticipated outcome. We got a better look at the defect – which we found includes the liver, bowel, stomach, and part of the right kidney. One end of his heart is also at the tip of the defect. I’m not sure what is wrong with the heart. It didn’t look “normal” to us. His spine makes a 90 degree turn not too far below the rib cage. His feet are okay, though. That was one thing that was better than what we had previously thought. Basically, though, there is just too much to fix so it’s not possible for them to fix it.
Their main concern is for my health. If I have any leaking, bleeding or contracting I am to call the doctor and go to the hospital immediately. Because Gabe’s cord is extremely short (I think the measurement was 4-5 cm) I am at risk for placental abruption. They were also concerned about uterine rupture due to my previous c-section. Neither of those things would bode well for me. SO, it looks like we’re on baby watch for the next 10-15 weeks. They wanted to make sure that the hospital back home has a good support system and we told them that they do. The OB also asked if we had used Now I Lay Me Down To Sleep when we had Felix. We did not because we didn’t know about it but I told her I had been looking at photographers and plan to contact one. (I would like to have a family photo shoot prior to Gabe’s birth – for us to have some family pics and so we can get to know each other; not meet under less than happy circumstances.)
So, there it is. It’s okay, though, because at least we know we had someone familiar with the condition assess him and can be comfortable that we’ve done what we can. And it’s not over yet. God has the final say and we will NOT stop asking for a miracle for Gabriel.
I’m going to wrap this up with some scripture. I signed up for the Beth Moore simulcast again this year. She will be speaking on Psalm 37 so I decided to read through it tonight. I can’t wait to hear all that God wants me to get out of this as I stew on it.
3 Trust in the LORD and do good;
dwell in the land and enjoy safe pasture.4 Delight yourself in the LORD
and he will give you the desires of your heart.5 Commit your way to the LORD;
trust in him and he will do this:6 He will make your righteousness shine like the dawn,
the justice of your cause like the noonday sun.7 Be still before the LORD and wait patiently for him…
18 The days of the blameless are known to the LORD,
and their inheritance will endure forever.
19 In times of disaster they will not wither;
in days of famine they will enjoy plenty.
We will not wither, we will delight ourselves in the LORD.
(P.S. – please feel free to leave a comment so I know who’s out there! :))
First of all – thank you all for covering us in prayer. We can feel God’s presence with us.
I wanted to put a quick update on here since I couldn’t figure out the wi-fi at the Ron Don last night. We’re doing well – made it here safely (although delayed) and managed to get a cab and get to Ron Don. They are doing construction and we woke up with no water this morning. Then we only had cold brown water. Then I went up just before we were to leave to give it one more try and I was able to at least wash my hair! (yay)
CHOP today:
So far we’ve spoken with the billing coordinator who told us that EVERYTHING is COVERED! Woo-hoo! They are in the BCBS network so that is a big relief.
I had my MRI done. I think Gabe held pretty still although I know there were some noises that made him jump and wiggle. I don’t have any desire to have that done again!
Right now we are waiting for our fetal echo appt which starts at 11:00. Following that I will have an ultrasound at 1:15. Last on the agenda for the day is meeting with the surgeon and high-risk OB at 4:00. I will post more later, so stay tuned!
Yet another Andrew Peterson song that I adore…
I give you praise, O Great Invisible God,
for the moon in the space of a dark night,
for the smile on a face in the sunlight.
I give you praise, O Great Invisible God,
for the sound of the storm on the window,
for the morning adorned with a new snow,
for the tears on the face of the old man made clean by the grace of the good Lamb.
And oh, I long to see your face, Invisible God.
All the works that you have made are clearly seen and plain as day,
so mighty and tender. O Lord, let me remember…
that I see you everywhere, Invisible God,
in the seed that descends to the old earth
and arises again with a new birth;
in the sinner who sinks in the river and emerges again, delivered.
And oh, I long to see your face, Invisible God.
All the works that you have made are clearly seen and plain as day,
so mighty and tender. O Lord, let me remember…
your power eternal, your nature divine.
All creation tells the tale that Love is real and so alive.
I feel you, I hear you, Great God Unseen I see you…
in the long cold death that the winter brings and the sweet resurrection of spring.
