Dads

It’s that day, once a year, when we pause to think about the important men in our lives, fathers and fatherly figures alike, and to thank them for the ways that they have helped to shape us, the lessons they have taught us and the love that they have shown us. This year, in addition to thanking my own daddy and father-in-law who are both wonderful men, I get to celebrate Robert as a daddy for the first time. 

Robert and I celebrated our third wedding anniversary last Tuesday.  I had written some of this for him then, but blogging hasn’t really been at the top of my list the last week or so, and hence I never got it published.  But here’s a little tribute to one of the newest dads on the block, who is also one of the finest. 

When Robert and I exchanged wedding vows three years ago, I never would have imagined that we’d go through all that we’ve been through together the past year.  I wrote before Clara was born about how grateful I am for this baby daddy and that love has just multiplied each day since her arrival.  He is the perfect match for me and already the perfect daddy for Clara.  Our personalities are polar opposites (except that trait of stubbornness that we share) and that balance keeps us in check with each other and the world.  I hope that our differences will serve as a powerful and balanced role model for Clara as she grows up, too.  Robert is laid back and calm and easy going.  He doesn’t get stressed out easily, even in the most stressful of situations.  He is patient.  He is rational and analytical and able to approach problem solving with his brain (while I’m often going at it with my heart), but he is also full of passion and love that is unparalleled.  I love Robert for his intelligence and his sense of humor, but most of all for his faith.  I’ve always marveled at how easily Robert places his complete and total faith in God.  He’s often the one to remind me (and especially the past few months) that if I say I’m going to trust God, I have to show it by stopping my incessant worrying and desire to control things.  He’s so right.  He loves his family and friends and will teach Clara well about the importance of surrounding yourself with people who are dear to you.  He will also teach her about God’s creation and is already spending time with her outdoors, showing her the trees and birds and sky and telling her all about this wonderful world that God has made for us and entrusted us with.  Soon after Clara was born, when the doctors were telling us that she wasn’t going to make it and telling us to prepare ourselves to let her go, Dr. Block told us something that has really stuck with us.  He said that 50% of marriages in the U.S. will fail.  An experience like we’ve been through just hastens the inevitable.  The marriages that were going to fail eventually anyways cannot endure the stress and fear and anxiety of a sick or dying child.  The marriages that are between soulmates, that were destined to last, become strengthened in a way that is indescribable.  I know beyond a shadow of doubt that we fall into that second camp and I’m grateful for the ways that God has used this tough journey to draw us closer to one another instead of driving us apart.  It’s been hard the past few months to always put our marriage first, but Robert has been so wonderful about continuing to insist on an occasional date night, about making sure that I get the rest I’ve needed, about taking care of our house and yard so that I could spend the time at the hospital that I did, for waking in the night to help with Clara’s feeds, for encouraging me and supporting me when I didn’t think I could do this anymore, for allowing me to have my moments of meltdown and for holding me and loving me when I was a crazy lady, and for so much more.  I’m grateful for every bit of that because it is a tangible expression of the way that he loves me and cares for me.  But I’m also grateful in a new way now, because I see the kind of model that he will be for Clara.  I recognize that those gestures are not just for me, but that they are teaching Clara about what a good man does.  She will learn right from the start about how important it is for a man to put his family first and her daddy will set the bar high for her to find a man as good as he is.  I cannot imagine being a mother to Clara with anyone else in this world besides Robert by my side.  I’m fortunate to have him as my husband, and Clara is truly blessed to have him for her daddy.  Robert, these girls love you.

I’m also thankful on this Father’s Day for my own father.  We are cut from the same mold and the similarities in our personalities have meant that we’ve been known to clash from time to time.  One of the great blessings that has come out of this experience with Clara has been a renewed bond of father and daughter between me and my daddy.  He’s said, “I love you” to me more the past three months than I think he had in the past ten years before.  Clara has softened his heart a little, and I’m so thankful for that.  I’m also thankful for the many things that he has taught me over the years and the inspiration that he is as a parent.  He has shown me the importance of sticking up for yourself and taught me just exactly how to do it.  I was able to be the kind of advocate for Clara that I was during her hospital stay because that was modeled for me by my own father.  He has taught me the power of words and how to negotiate.  He has taught me the importance of managing your money and modeled generosity for me in a way that I aspire to, but may never be able to live up to.  He has instilled in me a love for travel, a sense of adventure, a quest for knowledge and a drive for excellence.  He has given me a sense of righteous indignation and tenacity that I know is not just genes, but also years of watching him fight for the things that he believes in.  He has a tough exterior, but I know that beneath that he loves me and my brother with every ounce of his being and that he would do anything in the world for us.  That unconditional love can only come from a parent.  He has always set high expectations for us and my desire to make him proud and not disappoint him has helped me achieve a lot of what I have in my lifetime.  He has also taught me how to laugh and the joy of humor.  I remember as a child being tucked into bed upstairs and hearing my parents with friends downstairs still entertaining.  There was nothing sweeter than drifting off to sleep to the sound of my daddy’s raucous laughter.  It’s like music to my ears. I hope that I will model all of this and teach it all to Clara.  I’m proud to be a Hardy, but know that deep down I’m a Davis.  And as my daddy and I always say, “You don’t mess with a Davis.”    

I can’t leave out my other father – Daddy Bob.  Thanks Bob, for teaching Robert how to be a man, for instilling in him a wonderful faith and for raising him right.  You done good.  I can’t imagine how proud you are to watch him become a father too.  I pray he follows in your footsteps, for you are a wonderful man and an outstanding father.  I’m very thankful for you. 

This Father’s Day, my heart is full.  I’m thankful that we’ll be celebrating all together at home and that I am blessed with such wonderful men in my life.  It’s true what they say – a good man is hard to find – yet somehow three of them found me.  Thank you, Lord.  

78 Days Later

Clara is sleeping.  Robert is starting her 9:00 tube feed.  I'm sitting down to try to catch you all up on our discharge day. 

First of all, many many thanks, once again, to each and every one of you for praying us through to this point, for offering encouragement and advice and love, and for celebrating so joyfully beside us at God's mercy, grace and blessings.  We stand in awe of His power and glory and praise him for what an amazing thing He has done in our lives.  We never would have imagined that we'd have so many people, many of you strangers, to walk this journey with us and we will be forever grateful for you.

On Wednesday, there started to be some talk of discharging on Thursday instead of Friday.  Dr. Block felt like our plan of daytime breastfeeding and nighttime gavaching (that's the feeding tube) was going fine and that we really could go ahead and get out of there.  Couple that with a really really nasty case of mastitis for me and he was eager that we all just get home to our own space.  So Wednesday was a flurry of final appointments and meetings with lots of folks to get checked off on things.  Wednesday night Robert and I learned how to put in Clara's NG tube through her nose which was fairly traumatic for me, but now it's done and I never intend to do it ever again (I've made enough nurse friends the past 11 weeks... Holli, Crystal, I will be calling you if that tube comes out).  Then, we roomed in one last time to make sure we were able to handle the feeding pump and all those logistics.  I was as sick as a dog, so fortunately Robert took care of Clara all on his own that night and just roused me every few hours to remind me to pump, take advil, and go back to sleep.  Thursday morning we got the official word that we could go.  A quick note - if you ever spend 78 days in the hospital, you may acquire more stuff than you realize.  It seems that a significant portion of Clara's nursery had slowly been moved to Brenner's.  My poor mother made about 5 trips to the car (and dealing with the elevators that many times at Baptist Hospital is a real gift.)  Finally, about 2:00, we got Clara dressed in her special going home outfit (Thanks, Mere) and we began saying our goodbyes.  We said goodbye to Karen, our daytime nurse in Intermediate.

Karen, one of Clara's intermediate nurses

 We said goodbye to the rest of our NICU friends who we have loved and been loved by so well.  Of course, not everyone was there that day or at that time and it felt weird to not be giving each person who touched us so dearly a proper goodbye.  We did get to have final hugs from Dr. Block, whom we will never forget.  He "bookended" us, as he called it - both admitting and discharging Clara.  And he was with us through some really difficult days at the beginning which made this day of leaving so extra special for him and for us. 

And then we went back to the PICU where we spent the 22 days that Clara was on ECMO.   Those were the hardest days of our lives and in crisis you can really bond and connect with people in a very unique way.  We love that PICU staff so dearly and felt their love so richly as they doted on Clara and expressed their excitement for us to be carrying her out the door. 

Just a handful of the PICU nurses who we love so much.  Wish we could have seen the whole PICU and NICU staffs...

 We spent 78 days at Brenner Children's Hospital and on Thursday we walked out of those doors changed people.  We will never be the same for the experiences we had in those 78 days.  God has taught us much, poured out love and mercy on us that we have not deserved and blessed us richly in countless ways.  Although I wouldn't wish what we've been through on anyone, in a strange way I kind of treasure this time.  I've been in the middle of a miracle.  How remarkable is that?  I have felt incredible sadness and fear and despair, but also experienced such incredible peace and joy and hope that I think may only be possible with the former.  In short, I am thankful.




Clara was wide-eyed and alert as we left the hospital.  She was truly taking in the sights all around her and seemed amazed and interested that there is a world outside of the NICU.  When we walked through those doors and she experienced "outside" for the first time, her eyes were so big and happy.  She likes being free.  Just as Robert pulled up with the car, she dozed off for the first time in hours.

Dozing off as Daddy drives up

When we placed her in her carseat for the first time, those eyes shot wide open again and she cried and fussed, but only for a moment before settling down for her first car ride.  She gazed out the window of the car for awhile and eventually slowly nodded off again.




Once we got home, we took Clara in the proper way through her front door and beneath the gorgeous banner made for her by her Aunt Wendi.  We paused very briefly (it was 98 degrees) for a few quick photos like the one you've already seen.
 


Then, it was time for Clara to meet Rufus.  In all the excitement, we broke all the rules about how you're "supposed" to introduce the new baby to the family pet.  Good thing Rufus is the world's most perfect puppy.  He was excited to meet his new baby that we've told him all about, but behaved like the perfect gentleman and didn't jump on her or anything.  Since he's had two and half months to smell her on us, I think he knew right away what was going on.  He's always been great with kids, but we all felt sure that he somehow knew from the start that she was ours.  Mostly, he's glad to have his people back at his house and around a little bit more.  He's hardly left our side (or Clara's) since we've gotten home.  And yes, Clara has already been indoctrinated with her first few face kisses.  She was just fine with them.

Rufus and Clara meet, at last

In our first hours at home, Clara just looked around like she was trying to figure things out.  All the lights and colors and smells were new, but she never fussed, she just refused to sleep.  Too much to take in, I guess!  This is the expression we mostly saw.



She has slept well at night and eaten well during the day since we've been home.  Mama, Daddy and Clara are all doing well.  We'll write more about our first few days at home in another post.  But, as many of you have anticipated, this is in many ways the end of the story.  We still have some medical obstacles to overcome like getting Clara's feeds all oral and that NG tube gone.  While we are eternally grateful to be home and have Clara with us here, our lives are not instantly "normal."  We've been told by doctors to protect her from people and keep her fairly isolated, calm and restful for the first several weeks or months.  We have a big stack of appointment cards for follow ups with various doctors and that will probably dominate our schedules for quite some time.  And of course, there's just the normal "adjusting to life at home with a baby" stuff.  I'm learning Clara's routines and cues and we're all trying to figure each other out.  All this to say, I will continue to write and post photos, but probably not with anywhere near the frequency that I have the past three months.  We appreciate your continued prayers for us for we know that we still have some struggles ahead of us.  We do feel some sense of closure at this juncture, just knowing that the worst is behind us.  And hopefully over time this blog will evolve back to its original purpose - just a random post here and there about a family trip to the zoo or a special birthday celebration.   Hopefully it will begin to contain a lot less medical jargon. 

Since many of you have asked, yes - I do intend to print this blog in book form.  (There are several cool websites that do this for you).  It's the best way I know to be able to tell Clara her story someday when she is old enough to understand.  This post will be the last in her book.  It is my prayer that when she reads her story, she will know deep in her soul how special the beginning of her life was, that she will recognize the power of prayer, that she will be inspired by the fervor of a community of believers, that she will be humbled by knowing she is one of God's special miracles and that she will always know how very much she is loved by many, but most of all by Her Creator.

Thanks Be To God. 

Welcome Home, Clara!

 

The full story to come later.  But we are home and so deeply grateful for each of the steps that has brought us here.  Prayers for a good first night all together in our home.  And thanks be to God for the many abundant blessings in our lives and for the precious gift of Clara.

The Faces of Clara

 For those of you who have read patiently but been wondering where all the photos are, I am finally catching up.  A quick medical update and then on to the faces of Clara.  Our new plan (nurse during the day, feeding tube at night) seems to be working pretty well.  Weight is tricky because it'll be up one day and down the next, so it's important to look at 2, 3,4 days or more at a time instead of day to day.  But since our singular goal right now is feed and gain, it's hard to not feel disappointed when that morning phone call reveals a loss.  I'm especially taking it (probably too) personally because I feel like it's my job to make her eat and gain weight.  When she doesn't, I feel like I've somehow failed.  She gained 150 grams on Friday (probably rehydration from the 150 grams lost the day before), lost 30ish on Saturday, gained 67 on Sunday, lost 24 Monday.  So, we're overall in the black, but would love to see even more steady gain.  We've (re)-condensed her nighttime feeds so she receives 90cc (3 ounces) over 45 minutes every three hours.  IF she keeps gaining, the tentative plan right now is to discharge on Friday.  We'll be going home with that NG tube down her nose and we'll be giving her those 3 ounce bolus feeds through the tube during the night while she rests.  Hopefully we can replace those feeds gradually and slowly with breast and/or bottle feedings until we are done with the tube.  It was a really tough decision for Robert and me about the tube.  We had to decide between this NG tube that has some risks and the G-tube which meant surgery.  There are pros and cons to both and I think it was one of our first big lessons in parenthood - trying to make a decision in the best interest of your child when you're not really sure of the future or what the best thing is.  In my gut, I believe that she won't need the tube for very long; she's eating great during the day.  So, we're going with the less intrusive, but slightly riskier NG tube and praying that she won't have any complications like pulling the tube and aspirating.  Having the bolus feeds instead of continuous means that we'll wake up and watch the feed go in her to be sure that she doesn't have any problems.  We are so hopeful it just won't last long.  If it starts to look like it will be months instead of weeks, we'll probably come back and do the G-tube surgery. 

So, these photos have a few from last week when she was totally tube free and we can't wait for that day to return!  The rest are more recent since her tube has come back in this week.  Please continue to pray that Clara will gain weight.  We're going to give one more go at the bottle tomorrow and if by chance she guzzles it down, we could try bottle feeding at night and still potentially go home tube free.  It's a long shot, but we know Someone who is in the business of long shots. 

Okay, Clara's ready to eat!  Off I go.  Here are some photos.  Enjoy, and please keep praying.  Hopefully we'll have some in her "natural habitat" in the next few days. 

Rewind, Re-boot

Well, we pushed Miss Clara as hard as we could for her to catch on to eating orally all by herself and she gave it a valiant effort.  But after four days of working so hard to learn how to take meds orally, practice nursing, work on bottlefeeding with several different bottles, use the supplemental nursing feeder, try different caloric supplements to my milk, and adjust to her new life without morphine, poor little Clara was just pooped.  The feeding every two hours schedule yesterday really wore her out and she started to get a little lethargic.  I could tell last night before we "went to bed" (which I use loosely, of course) that she just wasn't quite ready yet.

She had a bit of a rough night.  Her 2AM feeding we tried to use a bottle and gave her some breast milk with extra calories and as I've stated before, she is truly a purist.  She wants mama's milk only and she wants it direct from the source.  She threw up that whole feeding.  By her 5AM feeding she was so hungry that she latched on (with this new size nipple shield she has really improved and changed her latch to be so much more effective) like she never has before and sucked, swallowed and coordinated beautifully.  It took four days, but at 5AM today, she finally really figured out how to nurse correctly.  She took about 80cc from me in about 20 minutes and despite our great efforts to encourage burps and prevent spit up, I think it was just too much too fast and she promptly threw it all up too.  Plus, she was down about 150 grams for the past 24 hours.  The weight loss was too much and some early signs of dehydration were starting to creep up.  It was time for Plan B.

Fortunately for us, one of our very most favorite attendings ever took over service today.  Dr. Block came in and talked with us and helped develop a new plan for Clara.  The NG tube is back in for now.  She's been getting continuous feeds all day today which we have slowly increased to 25cc/hr.  She had several pretty big vomits this morning, but that seems to be under control for now.  She will continue to get these continuous feeds overnight and we'll stop them at 7AM tomorrow.  Then, I will nurse her at 9AM, 12PM, 3PM and 6PM.  At 7PM we will start the continuous feeds again at 30cc/hr for 12 hours.  At 7AM those will stop and we'll repeat the cycle.  We're trying this over the weekend, hoping that she will rehydrate, gain weight, and most of all tolerate the increased volume. The vomits have us concerned that reflux is rearing its ugly head, so we are very prayerful that we will be able to keep this quantity in her so that she will have the calories and nutrition that she needs to grow.  On Monday, we'll re-evaluate how things have gone over the weekend and see where we should go from here.

I mentioned yesterday that we would consider a G-Tube if this didn't work.  We're still open to the possibility of this, if it becomes necessary, but are very hopeful that we can avoid it.  Clara has made great progress and continues to show promise.  We've been encouraged and affirmed by many people that they still think that she can do this.  It may take a little longer than we thought and we may have to move a bit more slowly.  But our goal is still to go home without any tubes, even if that means a little longer stay in the hospital.  Because of her history, she's at a higher risk for this surgery and we do not want to put her through it (reintubation, anesthesia, etc.) unless it is absolutely necessary.  If the weekend goes well, we'll stick with this plan for a few more days and then slowly begin condensing those nighttime feeds and then replacing them with breastfeeding until she's off the NG tube.

This is a little bit of a setback, for sure, but we've learned some important things during the past week. Clara does not like any supplements or formula additives.  She nurses best when she's hungry and rested (duh).  She has improved her latch and is getting more milk than she was a couple of days ago.  She can take her meds orally!  She tires out if we nurse longer than about 20-30 minutes.  She prefers life without a tube in her nose.  Most of all, she likes breastfeeding and is getting better at it every day.  We are not giving up hope.  I am still (reluctantly) learning patience. 

We were so excited a few days ago when we thought we might get discharged today.  Clara wasn't ready though.  As much as we want her at home, we want for her to be healthy and strong and ready to be there herself.  Today was spent kind of rewinding, rebooting, and getting ready to continue jogging through, not sprinting, this last leg of the marathon.  We could easily be here another month, either mastering these eating skills or if it does not go well and we still have to go the G-tube route it will take several weeks to recover from that surgery and be ready to go home using that system for feeding.  Again, I remain hopeful and optimistic for the former.  Clara has surprised us all over and over again with how smart she is, how strong she is and how resilient she is.  Let's pray that she'll do it again.  We are ready and willing to wait for her timing and most importantly, God's timing.


As you continue praying for us and this issue, please pray that Clara can tolerate these feeds at this rate/volume.  Pray that she will rehydrate tonight and that we'll see the return of some good wet and poopy diapers that have been absent today (once again, praying for pee!).  Pray that she will nurse well during the daytime 12 hours and get enough milk from me to sustain her and help her grow.  Pray that she will rest well at night while she receives continuous feeds so she is ready to work hard the next day.  Pray especially that she will overcome reflux and that she will not vomit her milk she needs to grow.  We really really do not want to face reflux surgery.  Pray for our stamina and endurance as we wait patiently for Clara to show us when she is ready to come home and that we will not push her too hard to get there too fast. 


We thank you all for the way that you have been moved and touched by Penelope's life and that you have prayed as faithfully for the Spencers as you have for us.  Continue to remember them as they walk the difficult path of grieving.  We cannot know the pain that they are feeling, but our hearts do ache for them.  In the midst of small hurdles for Clara, we are constantly reminded of how grateful we are to have her in our lives and to know that we will someday bring her home.  We are constantly grateful for that blessing.  We hurt so much for Samantha and DJ.  I am not comfortable sharing her email address on the blog, but if you email one of us we will pass it along to you.  She also sends this message:

"In lieu of flowers, please make a donation to: CHERUBS, 3650 Rogers Rd. #290, Wake Forest NC 27587. Seriously. The cats will just eat the flowers anyway." 

Much love to all of you.  Thanks for fighting this fight alongside us.  Ready, set, rewind, reboot, here we go again.  Come on, Clara!  Show us what you've got, girl!

Penelope

We've just found out that Penelope, the little girl that shares Clara's birth defect, was not able to make it off the ECMO pump. Samantha and D.J. are somewhere in the process of letting her go. Please join us in praying for them as they go through the hardest thing I can imagine.

There are so many questions I have about this, but they are questions that I doubt will ever be answered on this side of life. No one deserves this. Our hearts are breaking for them. And we try to keep counting our many, many blessings, even though we do so with mixed feelings in the face of such tragedy.

May God grant Samantha and D.J. peace.

Oh, Boobies

About 90% of my day now revolves around boobies.  My oh my.  Here's more than you probably want to know!

Clara has been nursing well for the past couple of weeks using a nipple shield.  It helps her latch on and she sucks great.  Yesterday, the lactation consultant came and watched her nurse again.  We discovered that while she appears to be nursing really well, she's not actually getting a lot of milk.  This is clearly not due to my supply which is out of control, so it has something to do with the way that she is sucking and swallowing.  She's a smart baby.  She's trying to protect her airway and not choke or aspirate.  She's had a lot of trauma to her neck and throat during her life and she's just being very careful and cautious.  That's probably why she likes the breast so much, but doesn't have any interest in the bottle.  She is able to control the breast better.  So even though she's been seeming to nurse well for the past couple of weeks, she's not getting as much as we thought.  She's careful how she sucks to not get too much milk.  Because I've got such a big supply, she's still getting a good bit - enough to stay hydrated and healthy and happy, but not enough to gain weight and thrive.  Today, we have made a few adjustments. We are trying to nurse for shorter periods of time (20 minutes or so), but more often (every two hours).  We've gotten a different size nipple shield to change the way that she latches on.  And we've added this bizarre contraption called a supplemental nursing feeder.  I put hindmilk that I've pumped into the feeder and we supplement it with milk fortifier and lipids (fats) to give it more calories.  Then, as she's nursing, she's also getting this extra milk.  Sounds like a lot of trouble, doesn't it?  It is.

Since Clara still lost weight last night  (down about 35 grams) they were going to put the NG tube back in today and resume her tube feedings.  I asked at rounds for one more 24 hour extension (I made it through college never once asking for an extension, but I've gotten three this week) to see how she will do with these adjustments.  Honestly, I think it's unlikely that she will gain the weight we need to see, but I want to be sure that we've done everything we can before putting a tube back in.  She is getting better and stronger every day, but may just need more time.  If we do have to put the NG tube back in over the weekend, it will still be just to supplement my breastfeeding.  She might get two ounces from me and then a third ounce through the tube at each feeding.  If we can establish a feeding plan that works, even one with a feeding tube, we'll be able to go home.  After much deliberation and many conversations, Robert and I have decided that if she does require a feeding tube to go home that we will have a G-tube surgically placed in her stomach (instead of the NG tube that goes in her nose).  This is more invasive, but also much safer and more stable.  She will be able to keep it as long as she needs it while she continues to build her energy and confidence with oral feeds.  An NG tube runs a risk of aspiration and is also an intrusion on her throat and airway which we want to keep open and clear. 

There was a time when we thought it would be inevitable that Clara would go home on both oxygen and a feeding tube.  We were very encouraged by her feeding progress and obviously hopeful that we might not have to go home with any tubes at all.  But we are still so thankful that she's breathing well on room air and that she is learning to eat.  If the worst thing that happens is we have to have one more surgery for this G-tube and go home with it for a few weeks or months until she learns and gets stronger, that is not a bad problem to have.

I have some great photos of her smiling the past few days.  She's very happy to be tube-free, too.  But I'll have to upload them later.  I'm just squeezing in this update between feedings.  Nursing every two hours is nearly around the clock (nursing - 25 minutes, burping -10, pumping- 15, one hour off and do it again!).   I'm so thankful that Clara is such a sweet, happy, good natured baby and that she fusses very little.  We're both trying to rest some in that one hour off.

Thank you so much for your continued prayers.  I was so frustrated and disappointed yesterday morning, but feel a peace today about where we're going.  I'm still hopeful that maybe Clara will gain some weight today, but if she doesn't, I'm also okay with the alternative plan.  We just want what is best for her.  We appreciate you praying us through this last step towards home.  I think we'll be there in the next week or so, one way or another.