Home Sweet Home

I can't believe it's already Tuesday. So sorry we haven't posted for a few days. I know some of you thought we may have been kidnapped and we have been by our baby girl :)
We had a great weekend together at home and Alex just continues to amaze us. As we read the Sunday newspaper, Alex read her baby animals book which she loves. She is already a month old and time is flying.

Since Alex has been home we've been working on settling back into a routine. Momma and Daddy have been a bit sleep deprived since Miss Alex likes to be up until the early morning hours lately, but we are working on that (all you parents are probably laughing). She likes her sponge baths and enjoys getting her hair washed in the sink. She's also been getting her vitamin D and is def an outdoors girl. We have dinner most nights on our back porch and like to visit outside when we have company over and of course Alex is the center of attention and right there with us.

We only have one doctors appointment this week with neurosurgery and it's just a follow up visit for her shunt. So far so good. No complications that we are aware of and she has been recovering beautifully. We plan to visit her great grandma Joyce tonight who is a very special woman to momma. We love hearing from everyone and are glad that you are still checking in.

Much Love!

Happy Days

We are all smiles here at home. Alex is doing great and she is just the cutest thing. Here are some pics. Hopefully these will hold everyone over til the weekend.

Home again

Yay! We just found out that she's recovering so well that we get to take her home today. Def a happy day for all 3 of us. :)

Recovery

Alex is doing well today. She is off the ventilator which is great news :) The nurses have stayed ahead of her pain and she has been happy (and sleepy) all day. Daddy got to feed her this morning and mommy is holding her right now as she naps. We couldn't be more happy. Here are a few photos I took today. I know some of you have been requesting more pics. Enjoy...

Shunt surgery went well

Everything went great w/the surgery. We just want her to start
breathing over the ventilator so they can take it out.

Shunt surgery in 8 hours

Today's been a pretty good day. We feel like Alex is pretty well recovered from her last surgery, and just in time for her shunt to be put in at 8:30am. We've spent the day holding & feeding her, and she seems happy, so we're happy too.

Which is really good, 'cause we all need to be in high spirits for tomorrow. It is a routine procedure, but it's still neurosurgery, and we continue to ask for your prayers that it will go without complications or infection and that she will recover quickly and painlessly.

Still raining

After 2 straight days of rain, we're ready for a little sun. It seems like we've been right here before - post surgery, sensitive to every little fluctuation in our babies vitals.

Having her home with us, we learned how she communicates. When she's hungry, she does the cutest little thing with her mouth, sticking out her tongue like she scraping a film off with her teeth. When she's angry, she balls up her fists and scratches at her face & ears, usually accompanied by an attempt at crying. She opens her mouth and looks like she's about to belt out a cry but only gives a little "ehh," as if that's enough to get her point across. And it always is. No need for theatrics.

Last night she let us know how she acts when she's really in pain. I don't want to go into detail, but it was heart-wrenching to experience. Something no parent ever wants to see, especially from such an undeserving young soul. We tried everything in our arsenal to calm her, save picking her up, but nothing worked. Even moving her head to the other side made her bawl, so we were pretty limited. I'm guessing she had a splitting headache, no surprise considering the massive pressure changes it's been put through.

She's on the feeding tube, and had recently "eaten" but they let me try giving her a bottle anyway, since she was still chowing down on her pacifier. It actually worked. She took the whole thing pretty quickly, and it was one of her best bottle feedings to-date. No breathing problems at all. During and after, her eyes were getting heavy which was great - we wanted nothing more than for her to go to sleep so we could go home & do the same. But it was only a temporary relief, subsiding almost as soon as she finished the bottle (and burped). More rooting, fist-clenching and inconsolable crying. We felt every bit of her pain.

This lasted off and on for hours, finally resulting in an order of pain-relief medication for Alex. It took an eternal 10 mins or so to kick in, but finally it did and it was like a giant rock was lifted off our chests. She went right to sleep - relief for all of us.

As you read this, you may think it's not fair. This baby's been through enough - she shouldn't have to go through this. I know we certainly feel that way. But as I sit her with the rain steadily falling outside the window, I pray that I can look back on this experience as something that made us stronger. Made Alex stronger. It's cliche, but rainy days are essential for growth. And when we feel this helplessness, we go to the only one that's really in control, and lean on Him with faith that he'll get us all through this. And all of a sudden, the rock is lifted off our chests.

Although we pray for sunshine right now, I can't help but think of the lyrics to a fitting song:

Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory. And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain

Dreary

It's a dreary day inside and out. Alex is sleeping at the moment. Earlier today I walked into the NICU and as I got closer to her bed I heard her crying and it was the sweetest sound - the ventilator was out. It's painful to watch her silent cry when the ventilator is in. She is very hoarse sounding and her little throat is swollen from the ventilator rubbing against it for two days. The nurses tell me she will be fine. Still no signs of infection or bleeding - thank God.

Here are a few photos from today....

Better, but not great

Alex is doing better today. She's not her normal blissful self, but at least they finally took her off the ventilator today - I really hate that thing. So her throat's irritated, her skin's puffy, and she has a hose in her head - I'm sure I'd be a little upset too. But it's just part of the recovery process I guess. Not looking forward to going through it again on Monday.

Baby steps...

A New Day

Alex has been sleeping most of the morning and seems to be comfortable this afternoon. As Doctor Handler put it, she is behaving herself. We have learned to recognize the cues she gives when she's feeling pain and seeing them yesterday about broke our hearts. It's a huge relief to see her in better spirits today.

They have weaned her off the Fentanyl (pain killer she took after the surgery) and are giving her tylenol every 4 hours. Her red blood cell count is normal which means that they don't suspect any internal bleeding. This was a concern for the neurosurgeons as they felt that right after the surgery she drained a significant amount of fluid too rapidly which in some cases can cause a major headache and/or bleeding. Because of this incident, they will continue to monitor her progress, watch for infection over the weekend and postpone the shunt surgery until Monday. We'll keep you posted as things can always change based on how well she's doing.

Alex is tolerating her feedings through a tube today which is great news. One step closer. She is still on the ventilator and hopefully will be extubated tomorrow. She's struggling a little today with her heart rate dropping when lowering the rate on the ventilator but the nurses feel she just needs a little more time before removing it. That's about it for updates. Please continue to pray for a healthy and complication free recovery before her next surgery.

N&J

Thank You

I can't even begin to tell all of you who follow our journey through this blog how much your words, prayers and thoughts mean to us. Today has been especially hard for mommy and it's been encouraging to hear from so many of you. We feel so supported and lifted up in prayer and thank each of you for that. I've often struggled with opening up to people about hardship because I feel vulnerable or feel like I have to be the strong one and in turn I tend to bottle things up. But I've learned that hardship, suffering and loss can bring people together in a beautiful way. There is so much compassion and love we have felt from this community around us and I'm so grateful. Many of you have shared how our story has touched you or how our baby girl Alex has inspired you and that's the beautiful way God works when we walk through the valley. We learn and grow through adversity and faith and in the end we are stronger. Thanks to those that reminded us God is here every step of the way and that He is taking care of our little Alex. We are comforted knowing she is in His hands.

Much Love

Surgery went well

So far so good. She's still sleeping and on the ventilator, so she doesn't look like her normal self, but experienced no complications during the surgery so we're happy. We still need her to recover quickly, though, for her shunt surgery on Sat.

We're outside now having a snack and making phone calls to keep everyone up to date.

Off to surgery for the Extraventricular Drain

She's sleeping now, waiting for the word that the O.R. is ready. As soon as they are, she'll be taken down, put under anesthesia, and receive the drain.

Please pray for strength & courage for her, and a complication-free surgery.

We're going to go eat some breakfast & get some fresh air. We've been told that there was some emergency procedure taking place in the O.R. and that it could be 15 mins before it's ready or it could be 4 hours. In any case, we'll let you know how everything goes.

-J&N

Another Hospital Stay

It's been a long day here at Children's Hospital. Alex had her suture site stitched up in the ER last night which did stop the drainage. Although no infection was detected, she was put on antibiotics and we stayed the night in the ER observation room.

Doctor Handler saw Alex early this morning around 7:30 and scheduled her head ultrasound for late morning. We waited until mid afternoon to hear from him again. He told us the fluid in Alex's ventricles had increased significantly over the past few days and she would need to be admitted into the NICU. He explained that an external drain would need to be put in again first thing Wednesday morning and they would continue to monitor Alex for infection over the next few days. He also told us that he was going to schedule Alex to have the shunt surgery for Saturday.

We are here at the hospital with our baby girl tonight and are staying in what they call a family sleep room close by as they didn't have any private rooms available. We are learning our way around this new hospital and have only heard great things about the care she will receive while here.

Times are tough but we will be looking forward to reading your comments to brighten our day.

-N&J

Back in the hospital :(

After an irritable night and some leakage of fluid from her suture
site (on her head) we had to bring Alex back in to the hospital. This
time we're at Children's Hospital. It looks like they're going to re-
stitch the opening, and keep her overnight for observation. Will
certainly keep you posted.

Baby Book

Alex has requested that everyone leave a special comment for her baby book. (At the bottom of this post, just click "comments" and be sure to sign your name). We love you all and thank you so much for your support and love during this precious time.

Pics

Close-up

At home with the new family

It's crazy - you'd think we'd have all kinds of free time to post now that we're home, but that's certainly not the case. Without a nursing staff to take care of her, we're starting to feel like real parents now. So...sorry we've been remiss in posting. I'll make it up by posting a lot more pics and video.

I'm sitting on the porch, listening through the monitor to Alex hiccuping in her sleep. She's been doing great since bringing her home. She's on her own natural sleeping/eating schedule, instead of the hospital's, which was every 3 hours. So that's been a huge relief, and she sleeps like a log. She stays up quite a bit during the day, and manages to sleep most of the night. Not straight through, of course - sometimes she wakes up after sleeping 4+ hours and sometimes we actually have to wake her up. Now that I think of it, in the past 2 nights I can only recall her waking up crying once.

We've been sleeping fine - Nic & I take shifts with her taking the 1st feeding around 2am, and I feed her around 6. She eats a lot more during the day, which is great. we certainly won't complain.

We have tons of Dr's appointments lined up for her, mostly at Children's Hospital, about 10 miles from us. It's a brand new hospital with the best Spina Bifida clinic in the region, so we're pretty lucky to have that. Alex will be seeing lots of different docs in different specialties, and they are all at the SB clinic. We have an appt w/the neurosurgeon on Tues and another head ultrasound. There is fluid accumulating slowly, so the shunt isn't out of the question. But we'll keep hoping :)

We're looking forward to a great weekend with our baby. Thanks to everyone for bringing us food and homecoming gifts. We're very grateful and enjoy your visits.

Here are some pics from her sponge bath today. She really seemed to enjoy it.

At home in bed

It's almost hard to believe she's actually home.

Alex's Final Exam

Jimmy & I woke up early this morning and called Alex's nurse to see how she did last night. Liz, her nurse told us she had a great night, passed the car seat challenge and put on a little weight. Our baby girl is coming home today :)

Alex has been in the NICU for 14 days and it's amazing how in that short amount of time we've connected and been moved by so many nurses, doctors, and families. We always tell the nurses, "hope we don't see you next week" jokingly but we will definitely miss some of them very much. LB, Kim, Liz, Terri, Krista,Teena, Becky, Darra are all nurses that have cared for Alex and they have all touched our family. The Docs have been great too and we send out a special thanks to Dr. Ann who is so sweet. It's obvious she loves what she does and she's been great to work with. Dr. Handler, as most of you know is the head honcho and has been such a blessing. Alex's back looks amazing and we know that she is always in good hands with him.

Another special little one named Saul will also be going home today too. Saul was born premature at 29 weeks and only weighed 2lbs 14oz. He's been in the NICU for 51 days and has grown to about 5 1/2 lbs. We met Liz, Saul's mom the first night we visited Alex in the NICU. She was so nice and had the kindest spirit. Over the past couple of weeks we've become friends and check in daily with each other. She has two daughters as well and as you can imagine has had her hands full. We are so happy for this family and we will miss seeing them too.

We are looking forward to being home with our baby girl and will be sure to post some pics tonight. We will continue to post pics and updates periodically (although not as often as we have been lately) so feel free to keep checking back.

Love,

Jimmy, Nic, and Alex

Quick Update

Well, mommy and daddy have been busy today getting our little Alex ready to go home. There is a long list of things we have to do before Alex can be discharged. The plan is for her to go home tomorrow and the final weigh in will come sometime in the wee morning hours. She is not consistently gaining weight and was still under her birth weight as of last night. If she hasn't gained weight by early morning, she will not be able to go home tomorrow as planned. I think she must have heard the nurses talking about this yesterday because she woke up for most of her feedings today and was pretty much a rock star.

Alex also has to pass a car seat challenge before going home. Any newborn who receives oxygen during their hospitalization has to do a car set challenge. Alex will also go home on oxygen as many newborns do mainly because of the altitude. During the challenge, she is monitored for about 9omin while in her car seat to be sure she breathes well in that position. Alex had her first trail around 7pm. She fell into a deep sleep and her oxygen levels desaturated for more than 5 minutes. Because she didn't recover and bring her oxygen levels up on her own she did not pass. Her nurse plans on doing one more challenge with her after her next feeding and will increase the amount of oxygen she is receiving to see if that helps. We will find out in the morning if she passed.

That's just a quick update before we head to bed for some much needed sleep. We hope to post more tomorrow and can't wait to share about her homecoming!

Peace & Love

Today is the greatest...

Alex is taking a nap in mommy's lap, daddy is reading and we are listening to Smashing Pumpkins lullabies. We are very happy that Dr. Handler came to see Alex early this morning to make a decision about the surgery. The nurses never had to start an IV or stop her feedings which made mommy's day. I really wasn't mentally prepared for another surgery so soon so I am thanking God for answered prayers.

We are still working on feedings as Alex is still learning the concept of suck, swallow, breathe. She has to have this down before she can go home. Mommy and daddy have to learn a few things too - we have become pretty dependent on the vital statistics monitor when feeding Alex. The past couple of days we have been learning to read her signs instead of looking up at the monitor in response to the constant beeping noises it makes or to see if she is taking enough breaths.

The Neonatologist came up with a plan to discharge Alex and if everything goes well she will be going home on Wednesday afternoon. We are so excited to take our sweet baby girl home with us. Thanks for all of the comments today, we've been checking every few hours.

Peace & Love

The call from Dr. Handler

Ninety percent of SB kids need a shunt. After pulling the temp. shunt, all the docs and nurses are 90 percent certain our SB kid will need one too. These are not very good odds for us, nor have they been from the beginning. But it hasn't deterred us from praying that we're in that other 10.

When we talked to Dean (our Pastor and friend) about how to pray in situations like this, even when it looks like God's will may not be in line with what we want, he told us "there's absolutely nothing wrong with praying for the desires of your heart." And this is one we prayed many times - trust me. Sometimes the most difficult thing to ask for is that His will be done. We would have never prayed that our daughter go through this. But we have reached out to Him in faith, trusting that he has a significant plan for Alex's life. I think this is something everyone reading this blog knows without a doubt - there is something special about this child (tears well up as I type this).

She's touched so many lives, and she's barely a week old. This is something else I've prayed about, since the day she was conceived. When praying that God would help us to conceive a child, I wanted it it be on His terms, not just mine, praying that it would be a child of God (although not really knowing what that means. Like I said before - we're not really holy people, just 2 average people with an above average desire to experience God's love). In fact, I've never prayed for anything so much in my life as I have for this girl, and I can safely say the same of Nic. I've also never had so many people rallying behind me as now. It's an amazing feeling.

I know not everyone reading this is able to pray to God. Many of you simply think positive things for us, and wish us well, not even knowing if there is a true God. Maybe a "God, if you exist, please help them." I believe God answers these requests just as faithfully as those of "prayer warriors" and organized prayer chains, and I thank you for being on this journey with us. I hope someday this simple acknowledgment will turn into a real desire to find out who God is, because that's all it takes to find Him.

So...back to the terrible odds we've faced. 90 percent chance our baby will go through surgery this afternoon. We've been expecting the inevitable. But it happens that Dr. Handler just made the call that we're in the other 10 percent, and our baby Alex is going home without a shunt. Can you believe it? We're in awe, and don't even know how to express our joy.

Thank you all so much for your thoughts and prayers. We'll def keep you updated on the details, and what we're to expect next as soon as we find more out. We love you all.

To shunt or not to shunt

Sorry...that's a terrible title. But it works I guess. That's the next big step for us. All the docs and nurses in the NICU are expecting the shunt. They've scheduled her last feeding at 6:30am, and they plan to go ahead & start an IV to get fluids in her a couple hours after that. All this and Dr. Handler hasn't even made the call yet. But surgery is a significant procedure, and if it is to happen at 3pm (as currently scheduled) then they need to have her ready. So I guess it seems more likely than not. But Handler should be weighing in tomorrow AM, and guess we'll know for sure then.

So we wait...

Still sleepy

Time seems to be flying by, although the days run together. I'm sitting here now, listening to Bob Marley songs that have been covered as lullabies as Nic gets "kangaroo" time (skin-to-skin) with Alex. Both appear to be sleeping in the reclining chair. We actually have our own little room with her, which is really nice (and private).

Alex did so great this morning. We came in, changed her, took her temp, did some range-of-motion exercises and massaged her legs to stimulate her. She woke right up, and took to nursing like a perfect little angel. She went back to sleep...3.5 hours later we did the same thing, although she wasn't as easy to wake and keep awake during her feeding, but she still ate for an adequate amount of time. I guess that must have held her over because she didn't want to wake much at all for her last feeding. Unfortunately, we had to give her food through the tube, which we really want to get away from doing. So we're still taking little steps toward normal parenting. I just hope she's just a heavy sleeper refusing to adjust to a fixed schedule (which wouldn't surprise me considering her mommy & daddy), and not a result of the fluid accumulation.

Her head circumference is slowly growing, so we're all just kinda thinking tomorrow will indeed be her shunt surgery, which we've been mentally preparing for. At least if it does happen we will have some peace of mind.

I guess my little jab about people not posting worked, since we've seen a flood of new folks posting, as well as the faithful ones :) - we love it.

Since some of you asked to see pictures of all 3 of us, we will happily oblige.

Learning how to eat

It's morning, and we're about to head to the hospital to see our sleepy girl. Yesterday evening went really well. Alex is waking up a bit more & slowly learning how to eat properly. Of course a big part of that is actually waking up for long enough to do it, and she did much better yesterday. And we talked to Kim, our sweet nurse from last night who said she did well from the bottle overnight.

So we're in great spirits. Looking forward to another beautiful shunshiney day indoors. We took some great photos last night, and I'll post them once we get to the hospital and I have a bit more time.

A little more alert

Today's been a great day so far. Our little girl was sleepy most of the day, but awake and alert for a good hour. She nursed pretty well (although still needs to learn to breath in the middle of her gulping) and is back to sleep now.

It's so awesome reading all the comments - so thank you all!

Just a pic

Not much news today. We're just settling into a routine of hospital by day, and home to our bed at night.

Alex has been sleeping a lot, not really waking up to feed so she's been getting most of her milk by tube. We'll be glad when we get her back to feeding normally.

Holding pattern

Ok...so I just had a nice long update that took me about 20 mins to type, only to hit "publish" and get an error. I hit "back" and it was gone. Arg!

So today's been a pretty rough day. Alex was up all night last night fussing and seeming to be in pain. When we got in this morning they were about to give her a bit of morphine to console her. It seemed to the nurses and the NICU doc that her head was bigger, and the ultrasound came back as "moderate to severe hydrocephalus." Shunt likely, but needed to wait on Dr. Handler to make the call. Not exactly a good start to the day.

The morphine seemed to work, she's been sleeping all day in Mommy's arms. Day's getting better. Then Dr. Handler came in and told us everything looked normal, and that he didn't think her fussiness was from her fluid. But just as a precaution he tentatively scheduled her shunt surgery for Monday, with orders for more monitoring.

So we continue to wait some more. :-

PS - We've noticed that not many people are posting comments today. Please keep letting us know you're here - we're constantly checking to hear from you.

Ultrasound results

Not looking good. We're waiting on the official word fm Dr Handler, but shunt surgery is likely.

What can you do?

We accidentally overslept this morning - something we have a feeling won't be happening again. In fact, we absolutely can't wait to bring our little alarm clock home.

It's crazy to see all of you going through this with us, the good posts and the bad. We are continually amazed by the emotions that flow through this seemingly impersonal medium.

Many people have asked us what we they can do to help us. We heard that meals are difficult to prepare with a newborn, and Cindy H. is doing a wonderful job of coordinating that aspect. We also want to thank the Hills and Geppelts for the meals they've brought to us the past few nights. My mom has been doing such a terrific job of helping out around the house, and will continue to be after we bring Alex home. I know Kathleen and Nat plan to also come help us out with that (thank you), so I really think we're covered as far as those types of needs, too.

But there is something else we would like. It's much easier, and way more important (and something many of you are already doing). Don't take life for granted. The tragedy of Frank Bingham suddenly losing his wife & kids has had a profound impact on us and our daily life. We saw how precious life really is, and how everything you love dearly can be snatched in an instant. I won't even compare our situation to his, but it taught us to love each other fully every day, as if you won't have the opportunity tomorrow.

Do the same with your spouse, mother, child. Hug him or her tightly and thank them for being who they are. Let the petty things that come between you slide, because they really are petty. As Matt put it: "be happy to wake up at 3am to hold your baby when it cries," because some people aren't even able to do that.

We're not just being humble when we say that's all we want you to do. Because having that perspective will change your life more profoundly than any gift you could ever give. And as you do that for us, it helps us know that all of this was worth it a thousand times over.