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!

Big Girl Bed and Cannulas

Our girl is just cruisin' along!  Since my last post Jolene has continued to steadily improve and her body has adjusted really well to daily changes that have been made.  It's nice to hear the nurses say that she is their "good" baby.  She tries not to cause too many problems. :)

Jolene was put into a big girl bed - the blue crib - on Sunday.  The babies get upgraded to the blue crib when they are mostly "out of the woods," so to speak.  She won't require any more surgical procedures (at least we aren't counting on any!), can regulate her own body temperature pretty good (her old bed had a warmer) and won't need to be re-intubated (have the ventilator tube put back in).  In the picture above you can see her feeding apparatus in the top left corner (the orange thing with the syringe on top).  They have the coolest machines!  You can measure out the amount of milk you want to be given (this works for things like blood as well) and the rate at which you want it to be delivered, and then just hook the syringe up to the feeding tube and snap it into the machine.  Jolene's feeding rates have gone up slowly over the last few days and she went a couple of days without any spitting up. She did have a few spit ups last night and this morning though, so today's rate won't be changing.  Jolene is probably the most excited about getting her CPAP machine off last night.  She responded well to the weaned rates and so they have now switched her to a high-flow nose cannula.  No more mask and tube in the middle of her face!  The picture at the top of the post is of her with a regular cannula though, and she had to go back up to the high flow, but that was expected (and due to a little miscommunication between night and day teams).  She still needs the pressure from the high flow cannula to keep her lungs open.  Either way, it's progress!

Our little Jellybean has also been busy capturing the hearts of her caretakers...many of the nurses, respiratory therapists and doctors who have cared for her periodically check in to see how she is doing.  One of her nighttime nurses, Tammy, just couldn't take it anymore and found some clothes to put her in.  We had decided she probably didn't need any, since she naturally gets kind of hot anyway, and she still has some wires and other devices that are in the way.  Jolene is also the third child and by then parents aren't nearly as excited about things like clothes.  Poor baby. :)  Anyway...Tammy put her in some clothes and she doesn't seem to mind them.  It makes her look so much older!  One of Jolene's other favorite nurses, Brooklyn, bought her a stuffed animal - a duck - yesterday.  She loved that when Emery came in this last weekend she said Jolene's voice sounded like a duck (her voice is still hoarse from being on the ventilator).  It is so wonderful to have people who care so much!  If you have to be in the NICU and your baby has to go through so much stuff, it certainly helps to have people there who can make the experience so much better.  Thank you!  And thank you all for your continued prayers!

CPAP

Yesterday was a huge day!!! Jolene was able to be taken off of her ventilator and put onto a CPAP machine. This means that her lung is getting stronger and is getting better at supporting her body on its own. (She does have some left lung that is there and growing but because there is not enough diaphragm muscle-the hole was patched with Gortex-the lung will not really be able to function).

So far the transition has gone smoothly and Jolene's body has adjusted well. All of her stats look pretty good. She has been quite fussy since getting on the CPAP though. Needless to say, she's not too thrilled with her new contraption! (Can you blame her?!?) We don't know if it's the head straps, the nose cannulas, if her throat is sore from having the vent tube removed, or if it's a combination of all of the above. Hopefully she will settle down soon. :)

Jolene has had her feeds restarted again and is so far doing pretty good with them. The feeding tube now goes through her nose and straight into the intestine, bypassing the stomach for now until her body can get used to things. She did get her OG tube put back in, however (goes from the mouth to the stomach), just to vent the air (the CPAP can make a lot of air go to the stomach) and suction out the stomach. Today the amount of milk was increased just a little bit and Jolene seems to have accepted the change well. 

As I sit with Jolene in the NICU I see all sorts of things going on. Her "pod" as they call them holds up to eight babies at a time, and there are probably 14-15 of these in this hospital. There have been as many as eight and as few as three babies and it is always changing. Some have been there a long time (mainly preemies who just need time to grow) and some are only there a few days until they get what they need and can move on. While we have been given the Grace to be able to see our baby make slow and steady but strong improvements, the case cannot be said for all of Jolene's roommates. It just breaks my heart when I see parent's tears and babies clinging to life. And then there are tragic stories of the babies' arrival - the mother's death and the father's grief, for example, at the bed across the room.  While there are privacy laws and the hospital employees do their best not to broadcast information, you can't help but hear a few things when you're in there and it just makes your heart hurt, your head spin, and puts your whole world in a new prospective. Count your blessings, dear ones, count your blessings...I know I'm counting mine tonight. 

Feisty Girl

Here's our little Jellybean, almost three weeks old now.  I absolutely cannot believe it.  Jason and I discussed today that we kind of feel like we are walking in a dream state, or maybe more like zombies.  Yes, I think I feel much more zombie-like.  We are absolutely exhausted but we are also absolutely good.  The last week or so has been fairly uneventful compared to the first couple of weeks, but it has been full of ups and downs, for sure.

Jolene's doctors have been slowly adjusting her ventilator settings so that she can be weaned off of it and then can "advance" on to the c-pap machine.  She is basically learning how to breath with one lung and her body is learning how to process all of the gases (oxygen, CO2).  She got her bandages taken off of her surgical incision and I must say I am impressed.  The line looks great and the girl is a fast healer!  (I'm a little jealous - her surgery scar looks waaaaay better than mine!).  She also got the stitches out of her neck where the ECMO cannulas were.

The big issue this week has been feeding.  Doctors gave the go ahead (finally!) for Jolene to start receiving milk through her feeding tube.  Up until now she has only been getting nutrition through her TPN (think giant cocktail of electrolytes, minerals, etc.) and lipid (nutritional and essential fats) lines.  In the meantime I have been pumping milk for her (I think the whole pumping topic may warrant a blog post itself) and the hospital stores it for when she is ready.  At first it seemed everything was going swell.  But then Jolene started spitting up the small feeds she was getting, along with really dark, granule-like gunk (looks almost like coffee grounds).  It was somewhat alarming but the doctors didn't seem too worried.  The "gunk" was old blood and they said as long as it wasn't red they would keep feeding through it to see if it got better.  Eventually the coffee-ground stuff went away, but the spitting up did not.  One of the worst issues CDH kids have is eating.  Go figure!  They make it through all of the life support, ventilators, surgeries and lung issues and they end up having eating problems.  It makes sense if you think about it though...all of their organs have been rearranged and things are bound to get a little off kilter in the process.  Zantac was prescribed for the reflux to see if that would help but no luck.  Next an upper GI/bowel study was ordered to make sure that there wasn't anything really wrong (dye is injected and X-rays are taken to see where it goes).  Thankfully no blockages were found, but there is some rotation of the stomach and intestines (not a huge deal for right now as long as there are no blockages).  Next up was erythromycin, which is actually an antibiotic but it is also useful for getting things flowing in the right direction.  Still some spit up.  Next they wanted to do a really slow continuous feed.  This seemed to be going well.  Until yesterday morning.

I came in to see Jolene and the nurse was trying to calm her down.  Occasionally she has coughing/choking fits from all of the secretions caused by being on a ventilator and needs to be suctioned out and calmed down.  But apparently this episode was huge.  Her heart rate and oxygen had dropped scarily low and she was as white as a ghost.  No one can really know for sure what happened - maybe a tube got kinked, maybe she was trying to spit up and it got stuck in the tubes, maybe, maybe, maybe.  Feeds were stopped (for fear of aspiration) and tests were ordered - X-ray, CBC (complete blood count) were first.  X-ray looked fine but the CBC showed that Jolene's hematocrits (ratio of red blood cells to total blood volume) were super low.  So, a blood transfusion was ordered and an IV had to be put in because her picc line is too small to deliver blood products.  Blood cultures and a urine culture (via catheter) were also taken because the white blood cell count was a little elevated - not enough to be a definite indicator of infection, but Jolene is now on more antibiotics just in case there is an infection while we are waiting for the cultures to come back.  They also tried to move her feeding tube down into her intestines, to bypass the stomach and help with the reflux issues for now.  However, another X-ray showed that the tube only curled up in the stomach (and Jolene was not happy about it).  Since the nurses couldn't get the tube to cooperate, we are waiting on the radiology and tube specialists to get it into place.  And no feeding until then.  This girl is hungry!!!  (She told me so several times).  Jolene has begun sucking on her mits and also a small pacifier.  How she does this with those tubes in her mouth are beyond me, but she is going to town!

So, yesterday was full of Jolene being messed with, and you should see how mad this girl gets when people bother her.  She's got the nasty sideways glance and the swinging arms already mastered, as well as the silent cry (because of her ventilator) and the frowning, purple face.  There is no questioning whether Jolene is upset!  But this feisty-ness, I believe, is what has gotten her this far.   She is incredibly strong physically and mentally and it has allowed her to continue to make progress each day, even when she's having a not-so-good day in other areas (despite everything going on yesterday she was still weaned a bit on her breathing rate).  Today was a much better day...her skin was pink again (hematocrit levels were almost double what they were yesterday) and nobody needed to mess with needles and tubes.  She was awake for long periods of time and was exercising like crazy - trying to wiggle herself down in her bed and grabbing her tubes for the bazillionth time.  We have to put mits on her hands and hold her arms down with a tight blanket over her bed (she gets too hot to swaddle) to try and prevent her from grabbing them, but she still tends to wiggle her little hands up.  I think we may be in trouble when this feisty little Jellybean finally gets to come home. :)

Here are big brother and sister at the hospital this weekend,

looking over the light rail and cars from the skybridge.

Just Chillin'

It's been a few days since I wrote, but that's because there haven't been the crazy ups and downs that we experienced last week.  We are all exhausted!

Jolene was officially removed from the ECMO machine on Wednesday.  The surgeons came in and removed those horrible, huge cannulas and tubes in the afternoon and our baby girl hasn't looked back since.  We are like a mini cheerleading team at her bedside, telling her how good she is doing and to keep it up. :)  Since being removed from ECMO Jolene is steadily improving.  Her blood gas levels are improving little by little, and her x-rays show that her lungs are starting to grow.  The doctors started to decrease the pressure on her ventilator yesterday and so far she has responded well.  The catheter is out, sedation and pain meds are being reduced a little each day, the arterial line in the umbilical cord was removed today, and an OG tube has replaced the old tube that was in, meaning that Jolene might be able to begin "eating" in the next few days.  Each task is little, but it all adds up...baby steps!  Below is a Jolene's "just chillin'" pose - a comfy moment in between the hard work of trying to grow lungs and fight tubes!

There have been some excellent family moments this week too...Jason finally got to hold Jolene yesterday and I was able to be there with him to witness such a priceless moment.  That girl burrowed into her daddy's arms and couldn't have been happier.  It was so hard to put her back into that bed by herself.  Right after that we were getting ready to leave and she opened her eyes up big and wide and was "talking" to us...who could leave then??  She just looked and looked at us, following our movements and voices.  I'm pretty sure she was looking at Jason and then at her tubes - back and forth - telling him "Daddy, see these?  I don't like them and I need you to get rid of them please!"  I truly believe that us being able to be with her as much as possible, giving her reassuring touch and voice makes all the difference in the world.  

Emery also got to come to the hospital today and finally meet her little sister.  She was so excited all week.  The tubes and wires didn't intimidate her at all - it's like they weren't even there!  She asked lots of questions about how things worked and talked to Jolene and held her little hand.  Then she asked if she could read her a story.  There are no words to describe our melting hearts.  To be blessed with such wonderful children is absolutely priceless and indescribable. 

We now wait (not so) patiently for things to progress, and are trying to get into a new "normal."  While there isn't really such a thing and this whole process is so, so very hard, it's doable.  With all of your support and prayer and with strength given us by the Big Guy upstairs, it's doable.  

Making Progress

Today was an absolutely fabulous day!!

Let me start with yesterday though...Jolene was holding steady and her stats were looking good.  We were informed on Sunday that the doctors wanted to try and get her off of the ECMO machine by Wednesday.  Our first thought: "No way!"  We weren't so sure that it could happen that fast.  Optimistic.  But unsure.  We didn't want to go too fast and have it take a toll on Jolene.  On Monday they turned the machine down a bit and Jolene responded well. So, the doctors started yesterday morning off by saying that they wanted to try and turn off the machine.  Eeek!  She did pretty good for a couple of hours, but then she got tired and they had to turn the machine back on.  (They draw blood every 1/2 hour or so and test the gases in it - Ph, CO2, O2, etc. and determine how she is doing from those results...Jolene's main problem has been too much CO2, meaning her lungs can't keep up the process of getting rid of the CO2 in her blood).  Jolene also had acquired quite a bit of fluid on her lungs, which can be common with the ECMO process, but of course makes it a little harder for the lungs to work.  Quite a catch 22.

So this morning the medical team said that today's x-rays looked better (less fluid) and at 9am they were going to go ahead and try to take her off the ECMO again.  This time Jolene's readings were much more steady and she remained strong.  At 1pm the decision was made to go ahead and take her completely off the machine (for good!) and do a quick surgery to remove the cannulas in the neck (the machine utilizes the cannulas to take the blood out of her body, run it through a machine that oxygenates it, and then returns it to the body (in short)...these tubes are huge for such a tiny little being!).  We were really, really excited but also nervous at the same time.  Once you are taken off the ECMO machine you can't go back on.

The surgery went well and only took about 15 minutes (the big worry in this process was creating clots and launching them into the bloodstream, as well as working with tubes in the arteries!).  After a little bit we went in to see her and she looked great.  It was such a shock to walk into the room and there not be any ginormous machines in there.  It looked so strange!  The tubes were gone from Jolene's neck and the nurse had cleaned her up and made her comfortable.  The doctor then came in to check on her quickly and told the nurse to position her a bit differently to optimize the lung functioning.  Then he stopped and said "Actually, you know what? Mom, would you like to hold her?" Say what?  Are you kidding me?!?!  Of course I want to hold my baby!  So, after calling in one of the respiratory guys for help and maneuvering lots and lots of med tubes, monitors, and the all-important ventilator tubes, my baby was in my arms.  Talk about one happy mamma!  I didn't dare move a muscle, as there were so many things to disturb, but we were warm and snugly, and Jolene was happy and peaceful.  It.  Was.  Awesome.    I eventually had to give her back, of course, but I'll take what I can get.  Jolene then got her catheter out and she immediately opened her eyes and stretched out her legs.  She was feeling good. :)  (Or, at least as good as you can get with wires in your arms and stomach and tubes in your mouth).

We still have a long, long way to go but today there were giant steps taken for sure.  Jolene has proved herself one strong little girl and God has shown his greatness and His mercy on our family.  Thank you again for all of you who have been praying and cheering for our baby...please keep it up!!  Oh...and go donate blood - Jolene has used so much of it these last few days and without donors things like this wouldn't be possible.  Thank you donors!! :)

Surgery

Happy Easter!!  Today we celebrate the resurrection of our Savior, Jesus Christ, who died and rose from the grave to save us from our sins and offer eternal life with Him in heaven...what an amazing gift!

We also are celebrating a successful surgery for our daughter Jolene and praising the amazing gift we have been given with her beautiful life.

Jolene's surgery was initially scheduled for 7:30 am, so Jason and I made sure to get to the NICU extra early in order to spend time with her.  The nurses even let us stay with her through shift change...blasphemous!  (They usually ask for everyone to leave at this time in order to transition information from nurse to nurse more smoothly).  7:30 came and went, however, and surgery was pushed back to noon.  The few hours went by more quickly than we could have imagined though, and we had to say goodbye to Jolene and begin the agonizing wait.  Since I was still a patient in the hospital we went back to our room and tried to eat some lunch and caught the end of Back to the Future II and then Dr. Doolittle...totally random movies that were on TV but we were willing to try and veg out with anything to keep our minds somewhat busy!  (I learned that Jason never saw all of the Back to the Future movies though - so that goes on our bucket list of movies to watch someday). :)

For anyone who has ever had their child in surgery, you know how it is...the feeling of not having control over anything.  The actual, physical hurt that is in your heart.  You are waiting and waiting and waiting for what seems like days but is actually only minutes.  We knew that Jolene's fragile little body was in good hands, but we didn't know what the doctors would find once the surgery began.  You hope for the best, but prepare for the worst.

Finally, the phone rang and I must say I had a small heart attack because it scared me so badly.  The nurse told us to come on up to the NICU - they were finishing up surgery and the doctors wanted to talk to us....and everything went really well.  The only thing I really heard was "it went really well."  I'm pretty sure I stretched my stitches trying to get up there as quickly as I could!

Dr. Tsao performed Jolene's surgery, which we were very happy about since he was the surgeon we had met with when she was diagnosed several months ago (who performed the surgery was really up to what day it would need to be performed on and who was on rotation that particular day).  We felt comfortable with his knowledge, skill, and like his pictures he draws for us to explain things. :)  He met with us in one of the conference rooms to reiterate that surgery went about as well as he could have hoped for, and that she was doing just fine.  Music to our ears.  He did say that her defect was quite large...they grade them from A to D, with A being the smallest and only needing some stitches to patch up (with a very high survival rate), and D being the largest where there is really no diaphragm there (and a very low survival rate).  Jolene was graded a "C," meaning she did have some diaphragm muscle to work with, but the hole was pretty darn big.  The survival rate for the C group is around 80-85%.  Still not what any parent likes to hear, but certainly better than other percentages that have been thrown out to us as of late.  The stomach, spleen, liver, and intestines were all moved to their appropriate locations and the Gortex patch was put in to hold it all together.  Moving all of that stuff out of the chest cavity revealed that there is in fact a left lung, but it is pretty small.  A few months ago we learned that kids' lungs actually continue to develop until about age 2 (wow!)...so hopefully that little lung will be able to do some catching up.

So...what now??  Now the ECMO machine will continue to bypass the lungs and let Jolene recover from her surgery.  The medical team will begin to turn it down soon and try to wean Jolene from the ECMO to the regular ventilator, working to expand the lungs.  While all this is happening the other organs that were moved will attempt to get comfortable in their new location and the heart will hopefully shift back toward the center of the chest (it was pushed to the right by all of the out-of-place organs).  It will be a long, slow process and we have been forewarned that there will most likely be a period of the recovery that doesn't go well, just based on the fact that what has been done to Jolene's little body is so drastic.  Totally understandable.  But she's a fighter!

The remainder of yesterday and all day today Jolene did fantastic.  She looked peaceful, her body was relaxed, vitals remained good, and she just looked much better.  Her incision is just below her left rib cage (you can see it in the picture above) and it already looks like it's healing great.  The most exciting part for me was that she was able to come off of sedation just enough to be responsive to our touch, and to try and open her eyes a little bit.  Even though I only saw her little peepers for a few seconds at a time, it gives me so much joy just to know that she knows we are here, knows that we are loving up on her, and that she is fighting and growing and healing.  We can't do much more than hold her little hands and stroke her arms and legs, but being with her is so wonderful.  I was discharged from the hospital today and it was bittersweet...I finally got to go home and see my big babies (who I haven't seen since Tuesday!)...but I left the hospital with empty arms, which leaves an empty space in my heart.  It makes me so sad, but then I remember how lucky I am and that we will bring her home and be able to be together soon.  I am uplifted by my family - by beautiful babies, my strong, deeply loving husband, my family who is here to surround us with love and help us with absolutely everything, and all of our friends, near and far, who have showered us with prayer and love.  We have a long, long way to go but we will take it one step at a time, day by day!

Rough Day

To say that today has been a rough day would be a bit of an understatement.

Jolene's first 48 hours or so were pretty darn good.  She was holding her own and her x-rays and sonograms all looked good.  No surprises.  Nothing more than what we were expecting.  Yesterday during the day the doctors were even contemplating a change from the oscillating ventilator to a regular ventilator (which is good!).  She looked pink and healthy and even tried to open her eyes when I was talking to her (they had her slightly sedated so she wouldn't pull all of her tubes out, which she tried to do almost as soon as they put them in).

Last night, however, Jolene showed us just how strong and feisty she is.  She was not happy about having all of those tubes hooked up to her.  She got too hot in the warmer.  She had a dirty diaper.  Etc, etc, etc.  I don't blame the poor thing...I would have been trying to scream too.  She tried to cry but can't due to the ventilator.  She was trying to move and was flailing her arms the best she could.  And she was trying to breath on her own, against her ventilator.  So, more meds were given to calm her down and make her comfortable.  Jason and I then went to get some rest shortly after midnight.

We went back up this morning after shift change to see our little girl, and the prognosis was not good.  The doctors and nurses were now prepping to put Jolene on ECMO - a huge step in the wrong direction as far as what we were hoping for.  The survival rate for babies who are sick enough to need ECMO is about 50%.  (And thank you Mr. Resident Doctor for giving us the straight facts, but you really need to work on your bedside manner!)...Anyway, her body was getting oxygen around where it needed to be, but not getting rid of the CO2 well enough.  They were now giving her steroids, morphine, stuff to increase her blood pressure, and a paralytic to keep her immobile.  She was just working too hard and it was going against her.  We were almost in shock...she was doing so good yesterday!  But the doctors reminded us that with her condition things can change in an instant.  There will be several ups and several downs.  They reminded us that she went the first two days without ECMO, which is impressive, and that she has several other good things going for her.

So, midday today Jolene had a surgery to be switched to VV ECMO, which is essentially a machine that is bypassing her lungs.  She now doesn't have to work so hard, and her heart and gas levels have stabilized.  The surgeons said she did very well during surgery and all of her vitals remained great on her own during the procedure (hooray!!).  But you should see this machine!!  It takes the blood out of her little bitty body through a cannula in her neck and then through a gigantic machine, where it is oxygenated, and then put back in so her heart can pump it to where it needs to go.  She has her regular bedside nurse and another specialist whose job is only to watch the ECMO machine.  Jolene now takes up half of her pod with all of her stuff (the NICU babies here are in "pods" of 4-8 babies per room).  It is so very intimidating, but fascinating at the same time.  It is such a marvel and a blessing that modern medicine has the capability to do something like this.

Since Jolene is now about as stable as she is going to get (since the machine is acting as her lungs), she has surgery scheduled for tomorrow morning to repair her hernia.  They will bring the operating room to her and put all of her organs back where they belong, then repair her diaphragm with Gortex.  Crazy!!!  After that we just wait for Jolene to heal.  We wait and see if her lungs will grow and expand and start to be able to do the job on their own.

These are scary, scary times and my eyes are blurry from crying today.  It was bad and good and crazy and mind boggling and just plain exhausting.  Please continue to pray for Jolene.  Pray that she can remain stable, that her surgery goes well, and that after her surgery she can then begin healing and growing and fighting like we have seen her want to do.  She is stubborn and strong and beautiful, this little girl.

Jolene Grace

Thank you, thank you, thank you from the bottom of our hearts for all of the prayers that have been said for our family today. It has been a really long day, but a good one.

Our little Jellybean now has a name and gender...introducing Jolene Grace Lachance. She was born at 11:07 and was 7lbs. 15oz. and 20.5" long. She's pretty chubby and cute as can be. smile emoticon

The surgery went well and I am feeling pretty good. Jolene is doing as expected, maybe a bit better. As of now she is on an oscillating ventilator and the doctors and nurses are adjusting machines and oxygen to try and keep her stable. No additional meds have been needed yet (except for a little bit of sedation, since she is squirmy like her big brother and sister and was trying to rip out all of her tubes!).

Jason is back and forth between Jolene and me...I haven't been allowed to go up and see her yet but hopefully I will first thing in the morning!! We have been told that surgery will occur at 5 days or when Jolene is stable, whichever comes first. We've had a good day but definitely are not out of the woods. Please keep those prayers coming!

We will post more soon!

D-Day

Well....tomorrow is the day!  We go to the hospital at 8am and surgery is scheduled for 10am.  

Tomorrow many, many more of our questions will be answered.  That's the great part.  Part of me just wants to stay right how we are - safe, secure, enjoying our daily routines and knowing that my baby is perfectly safe right where it is.  But then I remember that I have to roll out of bed and I start panting after walking up the stairs. And then I start saying "Hallelujah for tomorrow!" Any pregnant lady knows what I'm talking about. :)

So, though we do not know what tomorrow will hold, we are joyful, optimistic, excited, anxious, maybe a little bit scared, but peaceful none the less.  We know that we are in good hands.

Thank you so very, very, much - from the bottom of our hearts - to all of those who have been praying for our little Jellybean and our family.  We are deeply humbled by the outpouring of love and support we have received!  Please continue to pray for us tomorrow, and we will post an update when we are able.

Sharing the News

Look at this cute little face!  As a mom, of course, I'm biased.  But this little jellybean looks just like it's brother and sister from what we can tell so far.  Isn't technology great - that we can sneak a peak at our unborn baby in such detail??

I say "it's" because we do not know the gender of Baby Lachance #3 a.k.a. "jellybean."  Like our daughter, Emery, and our son, Samuel, we have chosen to be surprised at birth.  (There just aren't too many surprises in the world anymore and this is one of the very best)...

Anyhow, now that you've been introduced to the cute little face seen here, let me start by saying I'm writing this blog to more or less let our family and friends (that don't know yet) know the situation with our little person.  I went back and forth, contemplating whether I needed to write anything at all, whether anyone cared to know the details, whether I should wait until later, etc. etc. etc.  Finally my brain voted "in favor" of writing...if nothing else it's good therapy, so they say.

We have had a fairly uneventful pregnancy and everything is well with the function of the pregnancy itself (besides the fact that I am definitely ginormous and feeling slightly more like a small hippopotamus than ever before).  Just before Christmastime, however, we had our anatomy ultrasound that revealed what our doctor thought looked like a hernia in the baby's diaphragm.  We were sent to a maternal fetal medicine center for a more thorough ultrasound and they confirmed what our doctor had found.  We were then officially diagnosed with a "Congenital Diaphragmatic Hernia" or CDH and referred to a specialty clinic.

So, since January we have been working with a team of specialists to figure out what exactly the baby has, what needs to be done, and just keeping tabs on all the details.  So here they are....

Baby has a hole in the left side of its diaphragm that has allowed some of organs of the abdomen to come up into the chest cavity.  This has pushed the heart toward the right side of the body and has not allowed room for the lungs to fully develop.  After looking closely at the heart, it looks to be okay (they will do more ultrasounds after birth just to confirm).  There is lung development, which is good, however it is estimated to only be around 30-40% of what it should be.  The stomach and some intestines are definitely all the way up in the chest, but only about 12% of the liver.  It gets really serious when the liver is "up."  So, we are bummed that any of it is in the wrong place, but feel lucky that only a small portion of it is up there.  Given all of that data, the doctors have placed us in the "middle of the pack" as far as severity.  We have seen varying data on survival rates of babies with CDH, but it looks like the majority of sources site 50-70%.  Another great thing that we have going for us is the fact that there do not appear to be any other defects present.  We can't be 100% positive until birth, but from ultrasounds, MRIs, blood testing, etc. the CDH appears to be an isolated defect.

Sooo....what does all of this mean?

We have a c-section scheduled for April 1st, which is at about 38 1/2 weeks gestation.  The doctors elected for a planned surgery so that they can have everything and everyone in place and ready to go once the baby arrives.  This will make it easier on the baby and ensure that the appropriate medical staff is there.  (I'm sure they'd also rather have a good night's sleep than us waking them up at 2 a.m. by going into spontaneous labor!)

Once baby arrives the doctors will assess everything very quickly and determine exactly what kind of breathing support baby will need.  There are varying levels of ventilators and if need be, a fancy schmancy machine/process called ECMO, which will completely bypass the heart and lungs.  They will also keep a close watch on the heart, since it can be stressed too greatly by the lung's poor functioning.  Jellybean will need surgery, of course, to repair the hole in the diaphragm and put all of the organs back where they belong.  This will be done once the baby is stable - usually about 5-7 days the doctors tell us.  After that it really just depends on how this kiddo does.  We can expect to be in the NICU anywhere from a few weeks to a few months.

Needless to say, all of this has been quite a lot for us to digest these last few months.  We are optimistic though, and know that we are in the right place at the right time for such a situation as this.  The doctors we are working with are highly skilled and experienced, and the facilities are some of the best in the world.  We have great faith in our Almighty Healer and have the peace that no matter what the outcome, everything will be alright!!  Please pray for our little jellybean though, for big brother and sister and the changes and disruption of their "normal" lives, and for Jason and I to have strength through all of this.  We know that many parents go through much, much worse but no parent wants to see their babies suffer. We will keep everyone updated as we can, and I'll write more information as we know more.  Right now it's just a lot of waiting!

If you'd like to read more about CDH there are a couple of links below that have good information.

http://childrens.memorialhermann.org/services/congenital-diaphragmatic-hernia/
http://www.cherubs-cdh.org/