for Nora Grace: February 2015

This week I ate a fortune cookie.
The fortune I received left me hopeful.

This, combined with my many day dreams that all was well, left me feeling so excited for the many doctor appointments this week so that I could hear all of the doctors tell me how perfect Nora was doing and how everything is going to be a.o.k.

Even Nora is cheering because of all the excitement!

Well, that didn't exactly happen....

We started the week out light with occupational therapy: "Nora has itsy bitsy leak out the side of her mouth. Is she always tired at feeding? This might be too tired. Oh, and she is starting to get the hang of that new bottle? Her feeds are getting strong again? We'll move on the the harder nipple as soon as we can then. It'll be hard for her again, but she will get stronger."

Then we moved on to home nursing: "Her heart and lungs sound great, but she only gained 5 oz this week, and last week she gained 8 oz - so let's shouldn't be concerned yet, buuuuuutttttt, maybe not forget how important weight gain is." I reminded her that last week she came on a Thursday and this week she came on a Tuesday, cutting the week two days short, AND we also switched her bottle last week, and eating is harder work for Nora now. "Ok. Ok. So now it's fine."

Then on to physical therapy: "What? She just ate? You said two weeks ago she was eating at one. Not at noon? I thought she was on a schedule? But, good news is that she is a brand new baby this week- so much more awake and alert and her arms aren't nearly as tight! But her hip flexers, they are still tight. Loosen those up, Mom. And also, do some therapy on her eye, her left eye still doesn't open wide enough."

Then, on to our pediatrician: "Things looks great, all things considered. She is in the third percentile, but still tracking growth on a good line. She is the first baby we've seen with Turner's as a newborn, and the first Turner's girl we've had with a webbed neck (Oh, goodie! I'm so glad we can be the ones to prove your textbook right). And wow, when you guys come in we need more time for your visit- she just has such a large chart to read through before we can chat. Oh and also, I know the cardiac surgery team is telling you to maybe still wake her every three hours at night to feed, but we think it's time to let her sleep so you don't train her into waking every three hours. And one last thing, time to see an ophthalmologist- that left eye isn't opening wide enough. If they are concerned about eye development we might need a little surgery fix to open it up wider."

Next up, pulmonology: "How are the lungs? Well- here is some good news! Those bilateral C-PAMS we once told you would need to be removed immediately when she was born, they might be gone. They often disappear. Let's just leave them be until June. Then we will do another CT Scan and make a plan. If there is any part of them left, we'll remove them over the summer. But yes, she needs the RSV shot you've been fighting for, we'll encourage them to give it to her. In the mean time, don't go near large crowds and keep that baby germ-free!"

Ok great. Some news that brings a big smile to my face and leaves me feeling like maybe I can just let my baby be for a minute. Sigh of relief.

Then, cardiology:
"Nora's coarctation repair, her surgery, well those sutures are leaving some narrowing in the heart. We told you that was there right after surgery. They might stretch out as she grows and leave her fine, if it doesn't here soon, she wins herself a trip to the lab, where she will have a balloon procedure until she is big enough for a stint. Oh yeah, and her blood pressure is high. Let's wait a little longer to see what that is all about before she goes on blood pressure medication. Then, there is the hole in her heart. We told you about that before surgery. We decided not to fix it at that time because it would require a bypass machine and a more invasive surgery. And it's a small hole, it should close on it's own, they usually do. Nora's hole is indeed showing signs that it is starting to close. Hooray! But here is 'the thing.' It's very close to her aortic valve. And there is a smidgen of extra blood going into her lungs. The pressure differential is good, her left ventricle isn't dilated because of it. There is only a teeny tiny bit of dripping into that aortic valve because blood is passing through the hole. BUT, if that gets worse, whether VSD is healing or not, we need to do another heart surgery in the next few months to close the hole and stop the problem. It's the big surgery, the one with the bypass machine and she would then have a scar on the back and a scar on the front. Let's keep our fingers crossed?"

Oh. My. God.

We have a whole lot here. It feels like an unbearable amount of stuff sometimes. The feeding, the eye, the growth, the hip flexers, the lungs, the heart, the Turner's, and oh my gosh the questions... Is she breathing fast? Is she peeing enough? Does she turn blue at times? Does that eye ever open wide enough? Are her eyes tracking enough? Does the eye turn in at times? Are her legs straight or curled on tummy time? Are you doing physical therapy with every diaper change? What color is her poop? Are you still using precautions on the side of her incision? How is she when she eats? How do you clean the incision? Is her breathing labored? Does she snore? Does she clinch her fists? How often is she awake? How often is she asleep? Why did her thrush come back? How do you know she has acid reflux? How much is she spitting up when she does? Does she seem uncomfortable? Do you think she is ever in pain? Is she eating on schedule?

Then there are the contradictions from doctor to doctor. Yes, you can try to breastfeed soon. No, you can't try to breastfeed soon. Yes, you have to fortify your breastmilk with formula. No, you don't need to fortify your breastmilk. Yes, babies sleep on their back. No, sleep her on her side. The swallow study needs to be months from now. The swallow study needs to be in a few weeks. She needs prevacid. She doesn't need prevacid. Get her eye checked. Don't get her eye checked yet. She has to stick to the three hour schedule. She will probably cluster feed and get off schedule. It's ok to go places with Nora. No, stay inside and hide from the winter germs. She is growing great. She is still quite small. The sneezes mean nothing. The sneezing might mean she is aspirating. She can sleep as long as she wants at night. You must wake her to feed at night.

We are all a bit sleepy from all of this.

Sigh.

Sometimes I am so grateful that ALL OF THIS is coming with our first child. We don't know any different so we just roll with the punches and smile and laugh and enjoy our little baby. Sometimes I think it would be nice to have had a baby before all of this, so we knew what a newborn baby was like and how Nora is presenting differently. That way when they ask questions we would know if what Nora was doing was any different from that of a typical newborn baby. We don't know if what Nora is doing is typical or atypical. I don't know if I need to make a big deal out of lots of sneezes and hiccups or her stink eye. We don't know when her breathing is too fast or normal. We're not sure how many milliliters is too few in a feed or how big a drip is too concerning. We don't know if she cried more than most newborns or if her cry is discomfort or pain or simply because she is a baby.

Is this cry because of pain at her incision, chest pain, hunger poops, discomfort, acid reflux...?

Perhaps this is just parenting?
Perhaps we are having a little different entrance into parenting?

I have no way to know.

But I do know this: I am obsessed with Nora. And Luna hates it. But she is accepting it. And one day when Nora can throw that ball to her, Luna will also be obsessed with Nora.

Torrey sure love Nora though!

Turns out, we are still in the practice of trusting. It's still a trust we much put towards God. And a trust we must learn to have in ourselves as parents. We no longer have one team of doctors and nurses that rounds at our hospital room door each day and gives us one succinct plan of action for the day. We have a giant team of individuals with sometimes differing ideas and sometimes similar ideas that aren't all in one place at one one. We must talk, discuss, ask questions, make decisions on our own, and decide what works for us. We have to trust ourselves. And we have to trust that God has made us trustworthy. :)

At the end of the day, and this long week, and after all of the questions are done, the appointments are over, the incision cleaning is through, the milliliters are counted and our therapies are complete, Nora is our cutest little Valentine. She makes us so tired and confused and excited and happy and thankful. And we love her so very much.

And now some pictures because that's the best part of these blog posts anyway, right?

Nora Grace: 6 Weeks Old!

5 weeks!

Isn't it obvious how old she is here?

One Month!

Because it is important to remember that babies cry.

For now we pray with all we can muster up that the VSD (hole in her heart) closes up quickly, that the bilateral C-PAMs are indeed gone from her lungs and that the left eye doesn't need surgery. Those three things alone make a world of difference. That difference is three surgeries in the next six months. Let's pray!

After twenty days in the hospital, we made it home.

We've been home for about a week and a half, and in that time Nora has made a lot of friends! We have plenty of visitors, some family and friends, some nurses and therapists. We've had a visit from an occupational therapist, physical therapist and two nurse visits. We will continue to have these visits, as well as many doctor visits, for weeks and months to come.

The biggest battle Nora faces right now is eating. She still isn't safe to eat breastmilk, so we're still mixing a low fat formula that is delivered to our home. She still isn't safe to eat in any sort of "normal" fashion. Eating is quite an ordeal. She must eat a certain amount every three hours while on her right side, in an upright position while using the Haberman feeder bottle.

All that aside Nora is doing fantastic! She is one month old today and has gained one pound and seven ounces, weighing in at 6 lbs, 13 oz. Her eating is becoming more consistent and her volume intake is ever-growing. She continues to face hurdles, but leaps them with no trouble at all...her body was rejecting the stitches in her incision a bit and they had to reopen it and remove the stitch in order to resolve the irritation. She also has a hearty case of acid reflux and has to spend a great deal of time on her side and upright, while also taking a few medications in an attempt to resolve the problem. Regardless, her eyes are opening wider and more often, her cheeks are getting chubbier, her poops are getting bigger and her cry is getting louder and louder.

While Nora Grace continues to be a rockstar, Kevin and I are so very proud, so in love, and sooooo tired. #itsashardaseveryonesays :)

Part of coming home has been the most exciting and exhausting time in our lives, and also there is a bit of an adjustment period. We spent the first three weeks of our daughter's life in the hospital. We had a slow transition into parenting, and while in the hospital we only had to worry about Nora. There was no real life happening. No breakfast to make, no laundry to do, no bills to pay and bottles to prepare. It was all taken care of by the nurses, but more than that, we grew to love the community at Children's Hospital that we became part of.

Don't get me wrong. We are absolutely loving this adventure. We adore our baby girl and our pups and our home and having it all together under one roof. And our life is no more challenging at this moment than anyone else that comes home with a new baby. We have little to complain about- but I am a little bit mourning the farewell of our first home with Nora Grace- Children's Hospital.

I spoke with a woman while we were at the hospital that has a daughter with Turner's Syndrome and also had the heart surgery Nora had. She said, "It was literally years before I could go to Children's without anxiety. I was nearly having a panic attack each time we had an appointment."

I couldn't disagree more. Now, her path to getting to Children's was very different than ours, and much more of an Emergency and unknown situation, but I love that place. I absolutely love it. We've had two appointments there since we left and I get excited to go back each time.

Not only are the people there positively wonderful, but they gave us our little girl. And they made it relatively painless, and they showed us grace, and joy, and told me over and over how perfect Nora is. That happy hospital was the place where I first met Nora, and where I got to hold her for the first time, and see her blue eyes, and cheer her on. It's where she met her grandparents and great-grandparents and aunties. It's where she had her first photo shoot and her first bath. It's where we learned how to care for a little baby, slowly and with the help of the nurses. It's where we left her each night to get dinner or sleep. It's where they took phenomenal care of her, and where they made my every hope become a reality. Pregnancy was so very scary for me, but Nora's life has been made a joyous occasion because of the help of all of the staff at the hospital. So, for all of these reasons, and many more, leaving the hospital was a bit emotional for me. I feel so very grateful for that wonderful place.

And now, I'm thrilled to type this from my big, brown couch as Nora is lying next to me, and my pups rest at my feet. I'm glad to rock Nora in the rocking chair in that colorful bedroom of hers, hear her breathing as I sleep in my own bed, and have ALL of the clothes in my closet at my fingertips once again.

Ms. Nora continues to amaze us every day. Fingers crossed and continued prayers that this doesn't let up, and in the many follow-up appointments we don't find any more surprises- except for maybe happy surprises. In the next few weeks we'll be developing a plan for the lung masses we found during pregnancy and continuing to watch her heart post surgery. All of these prayers for Nora Grace seem to be heard- let's keep 'em coming!