Where has the time Gone?

Here it is, the eve of Jolene's first birthday.  And my, what a difference a year makes.  Last year at this time we were anxiously awaiting the c-section that would bring us our brand new baby.  We were excited, scared, curious.  We didn't know what would happen after our Jellybean was born...so many, many questions that wouldn't be answered until the moment our baby was brought into the world.

After being put on ECMO

CDH. Congenital Diaphragmatic Hernia.  It's as common as Spina Bifida and Cystic Fibrosis, yet I had never even heard of it.  Over 1,600 babies are born with CDH every year in the United States alone.  And of those 1,600, approximately half of those babies die.  Fifty percent!!!  That statistic is so scary when you are doing research after having your unborn baby diagnosed with a condition that you have never heard of.  And of those fifty percent, many are faced with medical issues for the rest of their lives.  But we live in Houston, where there is a phenomenal medical community.  We were sent to some of the best doctors in the world, who gave us the facts and took care of us as best they could.

When Jolene was born, the doctors yelled "It's a Girl!" (because we didn't know what we were having!).  Jason and I were both kind of surprised, actually, as we had a feeling it was a boy.  We heard a faint cry, and then just lots of voices.  I couldn't see anything, and they asked Jason just to sit with me, while they worked on our baby.  So scary.  The team got her intubated and stabilized and then let Jason over for a minute.  Then on their way out the door Jolene's transport team stopped and showed her to me.  My beautiful, beautiful baby.  Those moments will forever be ingrained in my memory...

The machinery...so much machinery.

These eyes say it all...

Fast forward through all of the NICU days - the ventilators, the ECMO (yikes!), the tubes, the meds, the stats, the feeds, etc. etc. etc.  We brought our little girl home on June 1, at exactly two months old.  She was exhausted those first couple of weeks.  (In fact, she slept better then than she does now!). Eating was so hard for her - lots of gagging, spitting up, struggling to get through a full feed without falling asleep from working so darn hard.  But we did it.  It took lots of work from everybody, but we did it.  Jolene came home from the hospital in the 5th percentile for her weight and 12th for her height...today she is in almost the 60th percentile for her weight and the 90th for her height.  And you should see this girl eat!  She is starving all the time, and eats whatever it is we are eating.  She's completely normal you guys.  Completely normal!!!!!!  I just want to shout it from the rooftops it makes me so happy.  There were a couple of colds early on that were a bit rough - some chest x-rays and nebulizer treatments, but really nothing too bad.  No hospital admissions, no really, really bad illnesses. No setbacks.  In fact, when we went to see Jolene's surgeons in December for her check-up we heard the same response from both the Fellow and the Surgeon when they came in the room - "This is the ECMO baby??" They couldn't believe how big and healthy she was.  They took an x-ray of her lungs to check the progress and they were so very, very pleased.  Full lungs.  Both sides.  Clear, healthy, taking up the whole chest cavity.  Dr. Tsao told us that Jolene really beat the odds.  We knew our girl had it in her! (We of course always have to be on the lookout for certain things you wouldn't have to be in other kids - risks of re-herniation and bowel obstructions are always looming, but for the most part, things are normal!)

Full, healthy lungs. We don't have any way of knowing to what capacity they work/will work in the future due to the diaphragm muscle (or lack thereof).  But they grew and expanded, and they're healthy!

Today Jolene is on the verge of walking, loves to dance, play peekaboo, and help everybody out with everything.  She follows big sister Emery around (particularly to her room, where she wreaks havoc) and loves to wrestle with big brother Samuel (and also to slobber him with kisses).  Our girl loves to be outside, loves kids and animals, and is just a pretty happy baby.  She does have a temper though, and makes her opinions known quite loudly.  This feisty attitude is what helped get her this far though, I know.  And it will take her on to do great things in her life.  Y'all (yes, I said y'all), this girl is THRIVING!  Looking back at my old posts, I prayed for this to be true.  I cannot tell you how much GRACE God has shown our little family with this miracle baby.  So many, many people were praying for our Jellybean, and just look at her now!

4th of July

Christmas Eve

Valentine's Day

 As we get ready to celebrate life this weekend, I want to thank all of you who have been on this journey with us.  It's been wild and crazy, but humbling and awe-inspiring.  There are so many pieces that came together just right, and I know that God put them there just for that reason...Happy Birthday Jolene Grace.  Happy Birthday!!!!

Thank you Sara Spada for the awesome birthday pictures!

Home Sweet Home

The last time I wrote we were getting ready to start our "Ad Lib" and were recovering from flooding everywhere...my oh my have things changed since then.

Jolene did pretty darn well with her "Ad Lib."  The doctors removed her feeding tube on Friday morning (the 29th) and after that it was all up to her to see if she could eat enough to stay hydrated and then increase to eating enough to sustain and grow.  The doctors had a minimum threshold set that she needed to meet, otherwise the tube would go back in.  Jolene far surpassed the bare minimum and did much better than we expected.  Eating is hard work though...very frequent (but smaller) amounts, applying pressure to her chin to lessen the gag reflex, holding her upright to help with reflux, lots of burping (and she's a "difficult burper"), keeping her awake (because eating really wears her out), etc, etc.

Come Monday, we anxiously awaited the rounds from Jolene's doctor to see what she thought of the weekend's efforts at feeding.  Dr. Wong and Jolene's OT came in to talk with me fairly early, and said they were very impressed with how everything had gone.  They asked if we were happy with her improvements and if we thought she would continue to improve, given what we had seen/had worked with over the weekend.  They also asked if we thought we could handle everything at home, given the extra attention that Jolene would need.  My answers: yes, yes, and yes!  So then the magic word was uttered: discharge!  We would be going home on Monday, June 1, exactly two months after our journey began.

Monday was not an easy day, however.  Jolene needed vaccinations, a hearing test, a reflex test (to see where she was developmentally since laying in a hospital for two months can really slow down natural developmental milestones), a car seat test (she had to sit in her car seat for an hour and a half while hooked up to all the monitors, just to make sure she could tolerate it),  and visits with the dietitian, case worker, and what seemed like a million other people.  By the end of the day Jolene was just plain done with people messing with her, but we loaded her up and left for home around 6:30pm.

Our little Jellybean continues to improve her eating and we will go once a week to the pediatrician to check her weight and adjust her feeding as needed.  We are praying that with hard work we can get her to where she needs to be not just to do okay, but to thrive!  This first week at home has been exhausting but absolutely wonderful.  You never really know how much you take for granted until you don't have it...to have our family all together under one roof is so nice.  We are all more relaxed, happy, and at peace.

It's been an amazing ride, these last two months...never in my wildest imagination would I have thought I would have this experience.  You always think it won't happen to you...but sometimes it does.  While Jolene's two months in the NICU was nowhere near what so many other families have to endure, we have seen our fair share of craziness and we would never wish half of what Jolene has been through on anyone, let alone a newborn baby.  But, through this experience we have gained a great perspective, a new appreciation for many things, and an awe at how great God is and how precious his miracles are.  We thank each and every one of you who has been on this journey with us, prayed for us, and worried about us and for us.  You have given us strength and motivation and we are very grateful.  I will post updates periodically on Jolene's progress!

Water, water, water...and Ad Libbing

         

It's now been a week since our big move from the NICU to the NSCU.  Jolene is enjoying her new room all by herself and her night nurses say that she has some periods of good sleeping at night.  She can have her lights off and not so many people bothering her!

This week Jolene's goal was just to work on eating.  She has come a long, long way...little Jellybean has a mad gag reflex and we have to try all sorts of tricks to calm it down, but luckily those tricks are working and she seems to be eating easier and easier.  She also has reflux, which is caused from having all of her insides relocated and turned around.  She's going to spit up quite a bit but our goal is to keep as much milk down as possible so that she continues to grow.  Today she is up to 9lbs 2oz (which is great, since a few weeks ago she kept losing weight) and she is eating anywhere from 1/2 to 2/3 of her required amount of milk each feed.  What she doesn't eat gets put through her feeding tube.
                                                                                                               

The picture above is Jolene without any tubes or tape on her face - the first time I ever saw her "naked."  :)  This was a brief period where they were changing out her tubes.  We are taking a giant step tomorrow, however, so we need your prayers!  Jolene's OT thinks that her tube doesn't help her gagging any, and that she would probably do a little bit better with it out.  She also needs to learn to get hungry between feeds (she has started to do this, but when she gets what she doesn't eat through her feeding tube, it's not very much incentive to eat more from the bottle).  So, starting tomorrow morning (Friday), we are doing an "ad lib."  The feeding tube will come out and we are just going to let Jolene call the shots for the next few days.  Jason and I will take turns staying at the hospital 24/7 and feeding her whenever she says she's hungry, which will most likely mean smaller but more frequent feeds (usually hospital babies are held to a pretty strict feeding schedule).  We have to hope that Jolene will take in the minimum amount required to keep her hydrated and then work up within a day or two toward the amount that she needs to sustain and grow.  If she can do that, then the tube can stay out and we can talk about coming home!!  We are nervous but excited!

This past week has also been pretty eventful with the weather.  Never a dull moment around here!  It's been cloudy and raining for pretty much the last month.  Never have I seen this much rain.  In my life!  Monday night I was at the hospital when another round of storms moved in.  Jason sent me a text to let me know I should wait a bit before driving home since it was pretty nasty out there.  I waited until I thought the storms had calmed down a bit and then headed home (about 11:45pm).  It was slow going but I didn't have any issues sticking to the roads I knew were higher.  I did see some of the lower frontage roads with cars partially submerged though.  Eek!  The lighting was also incredible.  I had no issues seeing the road, as it was lit up from crazy lightening!  The next morning Jason's boss called around 6am to see if he had left for the hospital yet, as she heard one of the roads that we normally take to get there was completely submerged.  We turned on the news and saw that most of Houston was flooded.  Come to find out, the really crazy rain came about half an hour after I left the hospital.  By the grace of God I drove home at just the right time and escaped without having to use oars to move my car along. The picture above right with the tall buildings is near the hospital and the highway that we usually use to get there.  The issue on Tuesday was then, of course, getting back to the hospital.  Jason finally made it there later that evening, thank goodness.  We then had another round of storms Wednesday morning that flooded parts of our neighborhood and knocked down trees which then knocked out power.  The forecast for the rest of this week is rain everyday. I think it may be time to start building an ark!  Either that or start raising frogs - we have ponds in our yard now that have tadpoles swimming all over the place. :)

Here is Emery getting to actually hold Jolene for the first time.  This little sister is infatuated and smiled and looked at her big sister the whole time.

Here is Grami reading and holding hands with Jolene.  Cuteness overload!

Movin' on Up

Duh-duh-duh..(clap)..Another one bites the dust (clap, clap). Sing it with me now!  Monday marked the return of Dr. Kahn, the neonatologist who was on duty when Jolene was born.  I believe that is was his willingness to be a little bit aggressive (but still cautious) that is one of the reasons Jolene has progressed the way she has.  I've seen so many babies sit for what seems like too long and then it makes it harder (and takes longer) for them to recover.

Jolene had been holding steady and doing well, but we were beginning to wonder what the grand plan was.  What, exactly, was the strategy going forward to get her home?  During "rounds" on Monday morning Dr. Kahn didn't waste any time in asking why Jolene had been with her ND tube for so long, and he immediately made a new plan for her.  (In the words of one of our favorite nurses, "Dr. Kahn gets $*!# done!"). :)  The ND tube was coming out and stomach feeds would begin through her NG tube (still at a continuous rate).  One more tube gone!!  We were expecting there to be a lot of spit up when this happened but Jolene kept it to a surprising minimum.  So, the next day her feeds were changed to a more "bolus" regimen - where the milk is given more all at once instead of continuous, as would be the case for a normal feed.  Jolene, again, did pretty well.  She had a few more spit-ups but nothing that anyone was particularly concerned about.  She has also been gaining weight more steadily now and is up to 8lbs. 12oz. (still on fortified milk though).

The OT has continued to work on bottle feeds and they are starting to get a little bit better.  Jason and I have also tried a few bottle feeds here and there but most of those end in Jolene falling asleep after just a few mL.  We just must be comfy I guess.  Jolene's main issue with the bottle feed is that the sensation of the milk going down her throat causes her to gag and then spit up.  We are hoping that having one less tube helps her get over this more quickly.  Today they even tried removing the NG tube during her bottle feed to see if it would help.  It might have a little bit but it was't significant.  Tonight, however, we had the best bottle feed yet.  Jolene took 2/3 of what we had warmed for her in quite a short amount of time with minimal gagging and no spitting up.  The volume was still nowhere near what she needs to be able to drink for a full feed, but hey - progress is progress!

Tonight was also a bit bittersweet but very exciting.  Jolene was moved from her "pod" in the NICU to a private room in the NSCU - neonatal special care unit.  This means that she is no longer considered critical and is one step closer to coming home!  The new room is really quiet compared to the NICU and we will have much more privacy, but I must admit it's a bit scary not having so much constant attention from the nurses.  We will also miss everyone that we had gotten to know on the 7th floor (we are now on the 8th).  When you are there for seven weeks you get to know a lot of very special people!

Hopefully my next post will feature a picture of Jolene buckled in a car seat ready to come home, but we will keep you all posted!   Hands and hearts praying and fingers crossed. :)

P.S.  Please continue to pray for our fellow CDH baby down the street, baby Luke...he is not doing so well.  His parents were in the process of saying goodbye to him last week but he miraculously has hung on!

I'll have a Coke with that...

This was just too funny not to post today...

Things didn't really start out funny though.  I had to take Emery to the dentist this morning so I was going to be later than usual in getting to the hospital.  I called the NICU to check on Jolene on our way to the dentist and everything was fine.  A couple of hours later when I finally walked into her pod, however, things looked different.  Her mobile that we hung over her crib was gone and things had been moved out of her bed (blankets, stuffed animals, etc.).  Her nurse Brooklyn said she had some bad news.  My heart immediately sunk.  She then said, "well, not bad, but not great."  Okay....

It turns out that she just happened to look in on Jolene (she had been sleeping peacefully) and noticed that there was milk leaking out from her tubing and all over her bed...she checked caps, connections, etc. and everything looked fine.  For some reason the milk was getting pushed back out of the tube instead of into Jolene, where it should have been going.  They called for an x-ray immediately to see if the feeding tube had come out of place but everything looked good.  (Phew!).  So, we were waiting to see what the doctors thought the next step would be.  One of the possibilities was having to put a new tube in, which would be, well, let's say not one of Jolene's most favorite experiences.  The first one had to be put in by IR (I think that's internal radiology ??) and it took days for them to finally get the job done.  Just a few minutes later though the doctor came in and said "This is going to sound really weird, but we're recommending Coke to try and unblock the tube, if you're okay with that."  Say what?  Yes, Coke.  Apparently Coca-Cola is more than just a refreshing bubbly drink.  It also unclogs ND tubes.

The next step was finding out how one orders a Coke for a medical procedure in the NICU.  After several nurses calling the Dietary department, being transferred to the cafeteria, and being asked if we "wanted ice with that," somebody finally went to the vending machine in the break room and bought Jolene a Coke.  I suppose it's probably not a common request for a newborn.  Just a teeny bit was pushed into the ND tube with a syringe (they had to keep pushing, as it was pretty blocked) and about three minutes later - whoosh! The tube was flowing again!  Who knew???  Mini-crisis averted.

Makes you wonder just what that stuff does to your body, huh?

 Sleepy little girl.

Look Ma, No Cannulas!

Today was a fantastic day in the NICU Bear "A" Pod...Jolene got her cannulas off!!!  She was doing great on the latest setting (and sometimes she would adjust her own cannulas and they would be just sitting on top of her nose for a while) so the doctors said go ahead and see how she does without any respiratory support today.  She did beautifully! All of her stats remained good today, so barring any huge setbacks of any kind, baby girl is free to breathe on her own.  She still loses quite a bit of oxygen when she gets upset but as long as the levels go right back up it's okay.  She may also require a little assistance when she eats, but that remains to be determined and really it's not a big deal (at this point).  So, another huge step for Jolene!

Now to just work on the feeding.  And the weight gain.  Jellybean has been losing weight consistently over the last week or so.  In fact, she is down to her birth weight.  No bueno!  The doctors ordered extra calories to be added to her milk, and she is also now getting a multi-vitamin.  Kids with CDH often work harder to breathe and circulate their blood and thus burn more calories.  Our family already has super high metabolism (and this kid can poop...let me tell you that everything is definitely working in the intestines!), so she's going to definitely need those extra calories.  Even after a couple of days with fortified food Jolene continued to drop weight, so we were getting really worried.  We have started to think that her body may possibly not be absorbing all of her nutrients, calories, fats, etc. like it needs to.  But tonight...tonight she gained back 160g, which is huge!  She had been losing 30-45g per day, so this gain makes up for quite a few of those losses.  Now, if only she can keep that up!

Jolene tried feeding from a bottle again today and it went marginally well.  Not as good as the first day but not as bad as the second day.  Just a lot of gagging and spitting up.  But we try again tomorrow.  And the next day.  And every day until she can get the hang of it and her body can tolerate eating normally.  She can do this!  We have to give her a little pep talk about it before she tries each day. :)

I finished reading a blog about another CDH baby in a hospital just down the street from Jolene today.  He has been there for five months already and still has a long, long way to go.  So many ups and downs and he is just really struggling to breathe and make big strides.  It just reiterated for me how blessed we are and how relieved we are that God's plan for Jolene has included steady progress and a light at the end of the tunnel!  If you would, please say some prayers for Baby Luke - he sure could use them.


P.S.  Thank you to our friends who came to visit this week and give us words of encouragement and to offer their help...we love to get visitors and share Jolene's great journey! :)

Food!

I haven't been good about posting updates lately...we're pretty much just chillin' now.  Jolene has been doing very well since she got off of her CPAP machine.  She is SO much happier and less fussy now! She has been taken down on the flow rate too - down to .5 LPM and 21% oxygen.  She's almost ready to come off of all airway support!

Late last week little Jellybean did come down with a low grade fever and her abdomen below her surgery incision turned red...they took some blood and urine cultures, started antibiotics and watched everything really closely.  (She also looked pretty pale...we were thinking maybe she needed another blood transfusion, as a similar thing happened a couple of weeks ago, minus the redness on the abdomen).  Her heart rate also went way up and the monitors showed her having weird arrhythmias.  The next day though there was no redness and as soon as her fever went down the heart rate did too and the abnormalities disappeared.  The cultures came back negative, so we don't really know what was going on but we're glad it all subsided quickly!

Feeds have been increasing gradually each day, working Jolene up to a "full feed."  It is still being given continuously directly into the intestine but she has tolerated it really well so far.  She does still have spit-ups occasionally but it is only mucus and stomach "gunk" so nobody is really worried about that.  She was taken off of her TPN and Lipids this week - her "vitamins" that have been sustaining her since birth, since she has been unable to eat.  Removing this also means there are two less tubes connected to her, and her PICC line (a line in her arm that goes directly to the heart) is scheduled to be removed today!  This also means she can quit wearing her clothes like a toga (since you can't pull them over the lines)...important business, don't you know! :)  All tubes have been removed from her mouth and put into her nose, in anticipation of getting ready to learn how to eat.  We met with the occupational therapist last week (yes, our one month old has an OT!) to evaluate how well Jolene was able to suck (on a pacifier, finger, etc).  She said we could start dipping her paci in milk and giving it to her to get used to the taste.  She certainly wasn't sure about it at first but she has been able to maintain a pretty good "suck" despite her mouth being full of tubes.

Today the doctors gave the go-ahead to try out an actual, real-life, genuine feed!  Her occupational therapist showed Jason how to do it and got her to drink like a champ.  The first little bit kind of made her gag and spit up, but she ended up drinking about 40 mL.  She spit about half of it back up but all in all it was pretty successful for a first try.  Jolene will get to try it again tomorrow and in the mean time will still have the tube in for main nutrition.  This is a giant step toward getting to come home! (One of the big issues in babies with a Congenital Diaphragmatic Hernia is reflux and digestion.  This makes sense, since everything has been moved around in there!  Jolene does have some malrotation but no blockages, so we are hoping it is something she can work through).

In the meantime, we hang out at the hospital and the nurses dote over miss Jolene.  They even made her some Cinco de Mayo decorations. :)

Thank you all again for your continued prayers, visits, and support.  We are so thankful that God has shown our family so much grace!