In the quiet

Finally... it is so much quieter. Emily was brought up to full body temp today and is doing well. She is still hooked up to wires and an IV, but lost a lot of that stuff since she's off the cooling pad.

Where there used to be 5 different machines with screens constantly blinking and sounds beeping, there is only one. We have space.

Where there used to be wires all over her, in squiggles on top of her head, across her face, forehead, in her mouth and nose, now, there's just a feeding tube and several probes stuck on her little body. We have our little girl's sweet face.

Where there used to be us, crowding around the machines, trying to touch her as much as we could - there we still are, but we have space.

We haven't handled the past few days very well at times. It's still hard. But, we did our best. And we have grace.

Tonight we start the wait for her MRI results, but oddly enough, I'm not anxious. At least not right now. I think the world of difference is being able to hold her and feel her and smell that amazing baby smell.

And there goes the curtain and new nurses step in, and I should probably go. The one thing I keep thinking is that Chris Tomlin song line: "You are good. You are good." And He is, no matter the outcome. I know this because today I get to hold my baby girl, and today, that's enough evidence for me. 

One tough cookie

Emily was taken off the ventilator around noon yesterday! She is still breathing well without it.

I had my days mixed up. Tomorrow (Saturday), not today, is when the MRI will be done. We won't get results back until 12-24 hours after the MRI. Tomorrow morning at 6am they will begin the process of slowly warming her body back up to a normal temp. It will take about 6 hours to do so. The MRI will likely happen tomorrow night or Sunday morning at the latest.

They track her brain activity through these crazy probes, and we can see her brain waves on a monitor - it's fun to see how she responds to us! But the point of the monitor is to see if she has any seizures, which she has not. Phew!

After she is off the cooling mat, we can finally, finally hold her. I can also begin nursing her, too. She will still be fed through her tube, but I can't wait to hold my sweet babe and nurse. Today she began taking in my milk through the tube, about 6ml every 3 hours. The rest of her nourishment is coming from something called TPN, which from what I understand, is a super-charged fluid full of vitamins and everything good.

Last night they had to give her more platelets and are still keeping an eye on that. She is off of antibiotics. Her glucose levels have still been low; they are stopping it today and will retest a few times to see how she does. She is on morphine and atavan to keep her comfortable. When it starts to wear off, she voices that she's not too happy - I'd be the same if my body temp was that low! We heard a little cry for the first time this morning. It was actually very reassuring. I want her to tell me all about it!

Just a couple hours ago, we had a little scare with one of her tubes. Blood was clotting at the end of it which they spotted during a heart ultrasound this morning. But, when they took the tube out, the clot came with it... so relieved about that.

I got to see Oliver today which did my heart good. He'll meet Emily tomorrow once we can hold her - we didn't want to scare him with tons of cords and stuff. She'll still have a bunch of tubes and cords, of course, but at least we can wrap her up and hide them.

My milk is coming in:) It makes me feel good to be able to do something for her. My heart just aches to hold her.

Thank you for your prayers and keep em coming!
-Pray that the damage is none to minimal.
-Pray that she will be able to stabilize on her own once she's off the cooling mat.
-Pray that her blood pressure increases - it's consistently low.
-Pray for overall healing.
-Pray for wisdom for all her doctors.

I'll try to update tomorrow, too. Love you guys:)

Sweet friends: please pray

Hey everyone... It seems impersonal to plop this on a blog, but it really is the easiest way for me to communicate right now. Baby Emily made quite the entrance at 3:43am today, and we could use your prayers. It was a pretty traumatic delivery/c-section. They had to completely knock me out. When Emily was born, her heart rate was super low and it took 20 minutes to fully revive her. She had already lost a ton of blood and was distressed.

Because of her significant blood loss, she may have brain damage. They are keeping her at a cooler temp, around 92.5, until Friday. They are trying to mitigate any possible brain damage. On Friday they'll do an MRI and we'll know a lot more then. The good news is that she's wiggly, has great reflexes, and is getting ornery- so much so they had to sedate her. As far as brain damage goes, they are telling us that's a positive sign. So we'll take what we can get. No big surprises as far as her heart- all looks as we expected it would, so that's good too.

Something weird was happening with my placenta. The doctor said it was calcified and in two halves; Emily wasn't getting enough nourishment. As for when the placenta went "bad," they are trying to figure that out right now. I had an appointment last Thursday, and everything looked great then.

I'm a mess. I haven't gotten to hold her yet and I won't for quite a few days. I'm working on getting my milk supply established which is a challenge strictly pumping, not being able to do skin-to-skin, and just dealing with c-section pain.

Trying to stay positive but we need our prayer warriors! Please intervene for supernatural healing and strength. I fully believe that there is incredible power in prayer, but I'm pretty shot right now, and can't pray much more beyond "Jesus, please help."

I (we) love you all and will do my best to keep you updated. Please text encouragement my way - I'll try to respond, but it's a little overwhelming here. Please know that I am reading it and needing it even if I don't get back to you.

Oh, and she's adorable:)

Plastic chairs and promises

Last week, as we sat in the cardiologist's office, we watched her draw out the anatomy of our baby girl's heart. This is now the fifth time a doctor has drawn it for me. She was making sure - as doctors do - that we understood exactly what was going on. I know that I'm not done putting in my time sitting in uncomfortable plastic chairs, nodding and listening as different doctors sketch the ins and outs of her heart, of the surgery, of the recovery, of the bypass machine, and on and on. If you've ever dealt with health problems - either personally or have been through it with someone else - you know what I'm talking about.

God doesn't do that. He doesn't sit us down and calmly draw out his plan, making sure we understand the terms, the detours, the risks, the complications, and the prognosis. None of this happens. Ever. And at times that is frustrating. He "knows the plans he has for us" (Jeremiah 29:11), but he doesn't sit us down and tell us those plans in detail, all at once. He chooses instead to walk along with us on the journey. He knows where we are going, but we do not, and he asks us to trust him. He tells us of his goodness through promises in his word, through others who know him, too, and, in the hardest moments, through soft reassurances you feel in your heart as you sit in your car and cry. 

The beginning of journeys like this begin with the unexpected: a diagnosis, a loss, a relationship cracking, a child leaving. And then we have a choice. Do we scramble, looking for anyone or anything to give us reassurances about exactly what we're in for, to give us some kind of a guarantee? Do we try desperately to fix the very thing that is breaking? Or, do we choose to turn to God and ask, "what are your promises for me?" 

So, I've been asking that very thing lately: what does he promise? What are truths about him I need to purposefully store in my heart?

• He promises that he will sustain us through it all: "He gives power to the faint, and to him who has no might he increases strength." -Isaiah 40:29

• He works all things for our good: "And we know that for those who love God all things work together for good..." -Romans 8:28 

• He is always good, no matter our circumstances: "Whatever is good and perfect comes down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow." -James 1:17

• He is able to do much more than we can even imagine: "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory..." -Ephesians 3:20-21

• When we go to him in prayer, he will give us peace: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." -Philippians 4:6-7

• He promises that he will never leave us; in fact, he is one step ahead, fighting our battles: "So be strong and courageous! Do not be afraid and do not panic before them. For the Lord your God will personally go ahead of you. He will neither fail you nor abandon you.” -Deuteronomy 31:6

But sometimes as we sit in those uncomfortable plastic chairs, those truths and promises are not the first thing that comes to our minds. 

And it takes some work to let go of the anxiety and make a deliberate decision to trust God instead. Yesterday was one of those days for me when I was deciding this ALL the live long day (yes, including at 3:54am). Do you ever have those days? Sometimes, trusting Jesus takes some doing. It's a process. Some days, it's a fight. To choose to trust him is not always an easy thing to do. Simple? Yep. Easy? Depends. 

I'm glad he's got so much grace for us.

Prayers and thanks! We are beyond thankful that her condition is treatable and, eventually, can be fixed through open heart surgery. Pray for a successful healing of her heart, whether that's in a crazy miracle form or either through the equally crazy, miraculous surgery. How amazing is it - truly - that we live in a world where doctors can diagnosis these things well before these sweet babies arrive. And, keep praying that the little turkey flips! ;-) Also, I'm so thankful for my sweet friends, Katie and Natalie - they threw me a sprinkle on Sunday:) It was so fun to just celebrate this baby girl! I'm also amazed and so grateful for the help friends, family, and coworkers have been offering to us during this time. You guys rock!

Look at those cupcakes! And my cute friends!

Update!

On Monday, Jared and I met with a team of doctors, including the head NICU doctor. We got a much clearer picture of what Emily's first days and weeks will look like.

In the past few weeks, more has come to light about baby girl's heart. We have found out that she will need an initial surgery between 2-4 weeks old. Her lower left ventricle is measuring smaller than her right; this means even more blood will be pumped to her lungs, causing a lot of stress on her lungs and heart. To help slow the flow down, they will be putting a clamp around her pulmonary valve.

We will be in the NICU for at least one week and possibly up to a month. It all depends on how Emily is doing and the timing of her first surgery. At the appointment, we discussed the medications she will be on, what breastfeeding will look like, and the hurdles she will have while nursing and gaining weight because she will be so tired from her heart working extra hard. As Dr. George put it, until her open heart surgery later this year, we will be in a state of "managing heart failure."

Now the open heart surgery is estimated to occur between 4-6 months old. Since my last blog post, we learned that the official term for her heart defect is double-outlet right ventricle with a VSD (subarterial ventricular septal defect).

Because of the NICU's strict visitor policies (see below), Oliver can visit once, but that will be it. This was hard to hear, but I totally understand why, and I am glad that they are protecting those fragile NICU babes from getting sick.

To be honest, the hardest part of the meeting for me was hearing that after she's born, she can stay with me for about 10-15 minutes but then she will be taken right to the NICU so they can run lots of scans and tests and keep her under close watch. I was happy to hear that Jared can go with her, but on the other hand, I know being separated from her for her first few hours will be really hard for me.

I was amazed at the NICU team and especially Dr. George. While we were touring the NICU, he greeted every single parent by name and knew their baby's name. He only asked for our names once and continually talked about Emily; he knew every detail of her case already and was very thorough in explaining what we should expect both about her stay and about her heart. To say that we will be in good hands is an absolute understatement.

Please pray for... 
-Baby Emily to flip! She is still breech; I was 34 weeks on Monday. Selfishly, I don't want to be dealing with recovering from a C-section during all of this. I'm seeing a chiropractor now who is performing a non-invasive technique that helps breech babies turn. I actually did this with Oliver, too, and he flipped at 36 weeks. Because of my weird uterus, I'm not a candidate for performing a version or any other technique that pushes the baby around, so please pray the chiropractor helps!
-On the other hand, pray for baby to cook for as LONG as possible. I'm a likely candidate for having babies early (Oliver was 2 weeks early). But, if being breech means she stays in there longer to bake, I will happily take it!
-Pray for our family as we gear up for all of this. We have been flying around finishing projects, doing taxes, buttoning up sub plans, work leave, making freezer meals, and so on. Pray for unity, teamwork, and sweet moments of togetherness before we enter into this season.

Lastly, a note about visiting us in the NICU: 
The hospital will still be under strict visitor's rules because of this nasty flu season. Here are their guidelines for visitors to protect all of the very vulnerable NICU babies:
-You must have gotten the flu shot this year to visit.
-You must be healthy when visiting.
-If you've been around someone who has been sick in the past couple of days, they ask you to refrain from visiting, even if you are not showing any symptoms.
-No children under 5 are allowed to visit.