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!