All About Makenna: 2 Month Update

Month two for our little miracle was more exciting and a lot less scary!  The first two weeks of this month were pretty much spent learning how to eat, which for us was a huge milestone.  Makenna was finally allowed to nurse on demand and she definitely enjoyed her new found source of comfort and began requesting special mommy time often (no complaints here!!)!   During this month she also had her first bath!  After she was born they were not able to wash her due to the fact that it would cause too much stimulation that would make her body have to work to hard.  As a result she had to wait until 5 weeks old for her first bath.  This was also the first time we got to see her without any wires and her oxygen!  It was so cute.  Best of all -- this girl absolutely loves baths!  The nurse said she has never seen a baby do so well during their first bath.  :-)  

 

This month we found out that we need to watch her development closely because CDH babies (especially those who went on ECMO), can have developmental delays.  She was 3 weeks early, spent 10 days on ECMO, and 28 days sedated laying on her back in bed.  She also had limited range of motion in her arms and legs due to IV's, lines, and splints that made it much more difficult to practice moving her body.   As a result she is expected to have delays.  In fact, they said that because of all of these factors we need to think of Makenna as 4 to 6 weeks younger than her actual age.  So while some milestones might be expected for a 2 month old, we shouldn’t expect to see them in Makenna until about 3 months.  Thankfully she will be getting physical therapy and behavioral therapy each for an hour a week to hopefully combat any delays she may have.  It is a little scary to think she will have delays, but it has made every little milestone she hits that much more exciting!

Anyway, at 6 weeks she was finally able to come home for the first time.  This was definitely an adjustment for all of us.  We loved the opportunity to bond with her in the comfort and privacy of our own house, without all the monitors beeping and wires awkwardly tying her to machines, but it took a little time to get use to our new roles!  The most challenging part was that she came home with her days and nights a little bit confused.  In the NICU activity continues around the clock and the nurses are always there do hands-on time every 3 hours.  She got into the habit of sleeping for 3 hours and then being awake for three hours around the clock.  It took several very long sleepless days and nights to get her into a better routine.

In her very own bed for the first time!

Also shortly after getting her home our sweet happy baby disappeared and was replaced with a cranky inconsolable baby.  It was heart-breaking to see her so upset all the time and it took a lot of the “fun” out of finally being home.  She cried and fussed constantly....nothing seemed to make her better.  The pediatrician said it was colic, but I knew it wasn't.  She looked like she was constantly in pain.  We tried all the typical “colic” remedies though because we didn't know what else to do.  We tried gripe water, gas drops, purchased new bottles designed for colic, and everything else we could think of---nothing worked.  She was still miserable all the time.  Finally one day I heard a little rattle in her nose.  I decided to suction her and sure enough, it was infected.  We brought Makenna back to the pediatrician and she said Makenna had a sinus infection. 

 

Her pediatrician is wonderful and very attentive.  Since Makenna is a CDH baby, she wanted to be extra certain it was just a sinus infection.  She did an RSV test and then sent us to the hospital for blood work and x-rays of her chest.  The hospital read her x-rays and said she had pneumonia and wanted to admit her immediately.   Of course given her CDH lungs this was some of the worst possible news; however, if she was being admitted anywhere it was going to be at Shands.  I called Joy to see what we should do and she said not to worry, Makenna most likely didn’t have pneumonia.  Apparently CDH lungs often look like pneumonia lungs and she was probably fine.  She had Dr. Kays immediately call our pediatrician.  They talked and came to the conclusion she just has quirky little CDH lungs.  WHEW!  Have I mentioned lately how much I love Dr. Kays’ and Joy?!   Makenna was given antibiotics and within a couple of days she was back to being our delightful little girl!   In fact, once she started feeling better, she finally gave us her first real smile (one not caused by gas or sleep - 12/9/13)!  She definitely has a smile that can melt your heart.
 

 Some Stats! 

Weight:  At 2 months Makenna officially weighed 7 pounds 7 ounces, which placed her in the 5^th percentile.  The 5^th percentile sounds low, but she was the 2^nd percentile at 1 month, so it is definitely a step in the right directions!

Length:  22 inches   (up from 21 inches at 1 month)

Eyes:   Still a beautiful slate gray.

Hair:   Makenna’s hair is still dark brown and she has what we call a peacock swirl (though most would call it a cowlick) on the back of her head that makes her long hair stand straight up.  There is nothing we can do to keep it down….even wet it stands up.  I love it though!

Clothes:  Last month newborn clothes were too big for our skinny little girl, this month the newborn clothes fit well.

Sleep:   Ugh.  Let’s not go there…. ;-)  Just kidding, as stated above she pretty much sleeps for 3 hours and then is a wake for 3 hours.  We don’t really have a night time routine at this point because of her being sick (clingy) and inconsolable, we are just in survival mode.   Rex took 2 weeks off of work when we got back, so for the last two weeks we tag team at night the best we can and he gives her bottles of pumped milk while I attempt to sleep. 

Favorites:   Makenna loves the ERGO, she typically falls asleep as soon as I place her in it.  She also really loves her Rock n’ Play, which is where she sleeps for now, and bath time.  She is still uninterested in toys, but she has been sick and hasn’t been very interested in much of anything!

Check out her one month update as well!

 

Home Sweet Home!

For 42 days we were forced to leave the hospital without our baby every night, but finally on November 21st we were allowed to take her home!  Words cannot describe how wonderful it feels to finally wake up (several times a night!) and see her beautiful face staring back at me from her bed.  She is such an amazing little girl.  It is incredible how she has literally captured the hearts of thousands of people all over the world.  So many people, most of which we've never met, became invested in her story, her health, and her life.  I wish I could thank each of you in person for the prayers and support you have given to us on this journey.  I know I can't, but please know that your prayers were answered and your support means the world to us--thank you!

During my whole pregnancy everyone kept saying that they couldn't believe how strong Rex and I are and how they didn't understand how we could continue to smile.  I have to agree, it surprised me too, but our strength came from trusting in the Lord, your support along the way, and seeing the strength and fighting spirit of our little girl.  Even when she was experiencing respiratory failure and the doctors didn't know if she would make it, we could just tell by looking at her beautiful face that she was going to be just fine. 

Before we left neurologist and neonatologist warned us that she may have developmental delays from her time spent on ECMO/the ventilator and the fact she was three weeks early.  While she was on ECMO and the vent she was sedated and stuck laying on her back all day everyday, which will stunt development.  At 6 weeks old they said to think of her as a 2 week old.   It worries me a little that she may be delayed, but she's perfect regardless.   They also said that CDH babies are notorious for being small and that that is okay.  Dr. Kays said he likes his babies lean because when you are lean your lungs don't have to work as hard.  This is a relief because when we left the hospital Makenna was only 7lbs 6oz, placing her in the 2nd percentile for weight.  As long as she continues to follow her own weight curve and stays on or above the 2nd percentile they are happy!

When it was finally time to leave the hospital it was such a weird feeling!  We were happy and excited, but also nervous.  She spent the first 6 weeks of her life in a wonderful and safe little bubble.  She had monitors to ensure her health and a nurse caring for her around the clock.  I couldn't help but wonder if we were ready for this!  I'm sure all parents feel this way to some degree when they leave the hospital, but when you are finally able to walk out the doors with your once critically ill baby, it is amplified times 100.  As we carried her and wheeled her oxygen out of the building I couldn't help but see everything and everyone as a germ ready to attack and infect my daughter.

Once we brought her back to the apartment where we were staying, the first thing I did was jump in bed and lay down with her on my chest.  After four weeks of not being allow to hold her and 2 weeks sitting in an uncomfortable wooden rocking chair, it was such an amazing feeling to lay down and snuggle my miracle for the first time.

The next day we packed up the car and after 44 days in Gainesville it was time to head home.  We drove for 6 hours, stopping twice to feed her and switch out her portable oxygen, but made really great time.  Makenna was a wonderful traveler and slept almost the entire time!

As we approached our house it was so surreal.  I remembered pulling out of the drive way 6 weeks earlier scared, excited, and unsure what the future would hold.  I remembered being afraid because I didn't know if this moment of bring her home would ever happen...but there we were pulling into the drive way with our wonderful baby girl as if the last 6 weeks never happened!

We did it.  We actual did it!

As soon as we walked in the door I immediately took her to her room and placed her in her crib.  I remembered how bittersweet it was building a crib for our baby when we didn't know for sure she'd ever get to use it.  As she lay in her crib Rex and I just stared at her in awe.  She is so strong and amazing.  We couldn't help but look at her and wonder how we got so lucky.   God knew exactly what he was doing when we gave us our miracle.  He knew we could handle this journey and as difficult as the last 10 months were, I wouldn't change a thing.  I am so glad this special little girl was chosen for us.  She is perfect in every way and words truly can't describe the love and admiration I have for my daughter.   She has become my world.  I know she was sent here and saved because God has a special plan for her.  I can't wait to see all the great things she will do and what kind of person she will grow to become.

Since we came home during flu and RSV season it is important that we keep her healthy.  She has spent all of her time staying home away from germs.  Other that weekly doctors appointments to measure her head circumference (ECMO can cause water on the brain), she has only left the house twice.  Even still it has been fun watching her really begin to experience the things we take for granted, such as seeing the sun or feeling cold wind.

More food in NICU 2

Now that we have been here for so long, we have definitely developed a comfortable daily routine.  Rex and I typically come up to the hospital for a few hours each morning (7:30 to 11am) then my mom comes up (11 to 2) while we go back to the apartment to eat or rest.  At about 2 we return and stay until shift change at 7 and then my mom comes back from 7:30pm to 11pm.  It is a long day, but I really think that our being there with her so often played a huge role in her surprisingly quick recovery.  Even when she was sedated on ECMO we would spend all day every day talking to her about home, reading to her, and playing YouTube videos or music for her.  Sometimes she would even FaceTime with family members who couldn't be here!  This routine has been great and allowed us all to spend a great deal of time with her, while also having some downtime away from the hospital beeps, monitors, and stress.

That being said, now that she is breastfeeding (and my mom is going home tomorrow) our scheduled routine has been forced to change.  We started out nursing/bottle feeding with scheduled feedings every three hours (8, 11, 2, and 5...am and pm).  However, even though she was keeping everything down, she wasn't gaining weight.  She should gain about 30 grams a day, but she was only gaining 1 to 3 grams.

After a couple frustrating days of trying to get her on their schedule, she was still having very little weight gain.  The nurse practitioner decided that I should begin nursing on demand.  I was so happy to hear this plan because I knew it would be better for Makenna and I to fall into our own natural routine; however, for now on demand feeding is proving to be difficult.  It is hard to do on demand feeding when you don't live with your baby just yet!  I think in order to truly make it work I will literally need to move into the NICU!  But bottles are a great invention and we are taking full advantage of them at night!  This new method seems to be working wonders!  The first day I spent 11 hours in the NICU feeding roughly every two hours on demand and I'm happy to report that she gained 26 grams!  The next day we did the same and she gained 55 grams!

Now that we have figured out the secret to successful weight gain, I know it won't be long before we go home!  In fact, they lowered her oxygen to 100 on the 14th and moved her to the NICU 2.  This is the step down unit designed for babies who need less intensive care or are about ready to leave.  This unit is much more noisy because the babies here aren't ventilated (they can cry).  Most of them were born premature or had surgery and simply need more time to get big enough to go home.  There are also more babies closer together and the nurses each care for 4 babies instead of just 2.  I must say I miss our quiet semi-private room, but I am so excited that this means she is getting better!

In preparation for discharge she also had an echocardiogram, lung x-rays, a hearing test, and an MRI of her brain.   I know these are just standard tests used to gain a full picture of her CDH and how her body responded to treatment, but it is still a littlr nerve-wrecking!  Before going on ECMO her o2 stats did dropped into the 40's and it happened again during surgery, so that coupled with the fact she was on ECMO for 9 days puts her more at risk for brain, hearing, vision, lung, and heart damage.  This makes me a little nervous for the results; however, she looks amazing, so I am not too worried.  We should meet with the pediatric surgeons and their team sometime this week to get official reports of their findings and discuss her needs for home.

Other than that Makenna, Rex, and I will just be hanging out in NICU 2 watching her eat up a storm for the next few days!  It won't be long now!

Milk...does the body good!

Today Dr. Kays stopped by to lower the flow of Makenna's oxygen from 300 to 200 and said they are looking to probably send her home sometime NEXT WEEK!  :-)

Until then this week and next week are all about feedings!  We began feeding attempts by letting her try to nurse for practice while continuing to give full feeds through her tube.  However on the third attempt with this method Makenna missed the memo that we were just "practicing" and took a what appeared to be a full feed from me....which was then followed by a full tube feed.  This of course resulted in a very full and uncomfortable baby!  They decided at this point that I will nurse her and then if she seems fussy I can offer 10cc's at a time through a bottle until she decides she's full.  At times when we do full bottle feeds she is given 55cc and allowed to take what she wants and have the rest poured into her feeding tube.  Then once she takes everything by mouth and doesn't use her tube for about 48 hours, they will remove it.

We quickly discovered that she is a much bigger fan of nursing than the bottle, which was both shocking and relieving!  I was hoping she would catch onto breastfeeding, but given the delayed exposure, the fact it takes more work, and her love of the pacy, I figured she would prefer the bottle.  That being said, for the time she is in the hospital it is important that Makenna both nurse and take a bottle.  She needs to eat every 3 hours and as much as I would love to, I just can't be up there for every feed around the clock.  If she didn't master the art of bottle feeding (and take all 55cc's) she'd never get that tube removed and we'd be stuck in the hospital forever!  Okay....Exaggeration. It would just mean I'd have to move into the hospital for a few days and exclusively breastfeed (not exactly the end of the world, just not ideal!) to avoid needing to use the feed tube.

Anyway, we decided to go to Target and buy lots of different types of bottles for her to try.  We brought them to the NICU and her amazing nurse tried a different bottle each feed throughout the night until he stumbled upon a winner!  Of course my child prefers one of the most expensive ones, but I am totally okay with that if she will eat well!

The next day I came in and nursed her for the 8am, 11am, and 2pm feed.  She did great and wasn't the least bit fussy in between feeds, so I assume she got enough to eat each time.   At 5pm I left and my mom feed her with her new favorite bottle.  She took all 55cc's in 10 minutes!  I came back for the 8pm feed to nurse and mom stayed for an 11pm bottle--she did great for both of these as well!  Her nurse took over the 2am and 5am bottle feeds and thankfully she did great with these too!  I am so proud of my little girl--she made it 24 hours without needing to use her feeding tube!  She also gained a little weight in that 24 hours (7.66lbs to 7.69). They are hoping to see a gain of 20-30 grams a night, Makenna is currently gaining 1-3, so she definitely has a ways to go, but thankfully she isn't loosing weight.  Also, so far Makenna is able to digest her milk and isn't spitting up.  CDH babies are known for having bad acid reflux, so while we aren't seeing signs of it yet, she is on medicine as preventative measure.

After 36 hours of successful feeds, Makenna's NG tube was removed!  Now she has one less line and a little bit more of her face was revealed!  She only has oxygen now, which Dr. Kays says she will probably go home on.

All About Makenna: 1 Month Update

It is amazing to think that our sweet baby girl is already 1 month old!

This month has been full of medical milestones for her, which you can read all about in other entries, but despite being sedated and critically ill for most of the month, she has also experienced normal baby milestones as well!  It is so fun to see her little personality begin to emerge! 

Let's start with the basics -- Makenna Claire is currently 7lbs 3oz and 21 inches long.  This puts her in roughly the 2nd percentile for weight and the 50th percentile for height.  She is a long and skinny little girl, in fact even at a month old newborn clothes are still big on her and she is still in newborn diapers!  We have been working on weight gain lately, so she is currently getting 52cc's of breast milk through a tube in her nose every 3 hours. Hopefully soon she will get a little bit of chub on her bones!

Physically she has a head full of straight dark brown hair and beautiful slate grey eyes.  For the longest time she looked just like me; however, once the ventilator was removed we discovered that she has her daddies mouth!  It is fun seeing a little bit of both of us hidden inside the beautiful and unique little girl we created!

As you might have guessed Makenna is a very strong, feisty, and somewhat dramatic little girl.  She doesn't like being awakened for hands-on time and definitely lets the nurses know.  She is known as the baby you do not want to wake and several nurses have been known to "skip" hands-on time to let the princess sleep.  We don't mind though because sleep allows her body use all of its energy for healing!  Makenna also dislikes getting her blood pressure taken and having dirty diapers.  Sometimes it feels as though we change her diaper every hour because even the slightest bit of moisture causes her to throw a fit.  On the other hand, she really loves her pacy and is uses it to practice her sucking reflex and to self-soothe).  She also likes watching YouTube videos on our cell phones and listening to us read books.  It is so cute to see her eyes get huge eyes fixate on the images in book or on the screen.  Another one of her favorite things is the mobile one of the nurses put on her crib.  It plays the song "Ode to Joy" and she absolutely loves it.  She will watch her animals spin for a really long time and enjoys listening to the music play when she is falling asleep.  Speaking of sleep,  she has been giving us lots of little smiles while she sleeps!  I think real smiles aren't to far away!

Her first month has been full if challenges and triumphs.  She has already experienced so much and is going to have an amazing story to tell.  I know everyone feels their baby is a miracle, but this little girl gives the word miracle a whole new meaning!  I love my miracle more than words can describe and I am so thankful and blessed to have such an inspirational little girl in my life.  I still look at her everyday awestruck by the fact that she's mine!

Feedings and Flow

 

After she was placed on ECMO Dr. Kays said "We've done all we can do, but we can't make her get better.  Only she can do that."  Then he rubbed his head with both hands.  It is a well known fact that he only rubs his head if he is not happy with the way things are going.  It was at the moment that we knew it wasn't good.  Although, this week I have decided that Makenna heard him loud and clear and became determined to get better!  She has been such a rock star during this whole process and continues to amaze everyone and surpass their expectations.  Many nurses have stopped by to see Makenna and they always mention how she was the sickest CDH baby they have seen in a long time (they usually have 4 to 6 at a time) or that they just wanted to come by and see the "miracle of the NICU."  I always knew she was a fighter and that she was going to be okay. However, I also always knew that she was very, very sick -- I mean...they don't 1 day old babies on ECMO for fun...but hearing people who work with these critically ill babies for a living tell us how sick she was, just makes me cherish my beautiful miracle even more! 

She started showing lots of little expressions this week --- including this adorable little smirk!  <3

Since the ventilator is gone we have shifted our focus to feeds, weaning medicines, and getting her onto regular nasal cannula oxygen.

Currently with feeds she receives 52cc's of breastmilk through a feeding tube in her nose.  They place the milk in a syringe and hang it up.  This lets gravity send the milk through the tube and into her stomach.  Also, before each feed they suction out her stomach to see if there is anything left from previous feeds or if there is any air trapped in her belly.  For the first two or three feeds she would have a little residual milk left over from a previous feed; however, for the last week or so her belly has been empty each time they do the suction.  This is a great sign because it means that her body is properly digesting her food -- she has also only spit up once and I blame that on the fact she was gagging on her ventilator at the time!

We have also started to introduce her to the concept of breastfeeding.  She loves her pacy and sucking on my finger, so we know she has a well developed sucking reflex...now we need to work on swallowing.  She tends to get scared when she gets too much in her mouth or starts to cough as though she is choking.  I am excited to get to nurse her, although it does worry me that I can't tell how much she is actually eating.  Right now she is allowed to "attempt" nursing, but she is still receiving full feeds in her tube because they assume she's not getting much milk.  Eventually they might start weighing her before and after feeds to see how much she is eating, but it is hard to weigh her oxygen and lines. 

Speaking of lines, Makenna had 14 medicine pumps hooked up to her at one point and as of yesterday she now has 0!  She is still receiving sildenafil for her lungs, two different diuretic to remove fluid from her lungs, and an acid reflux medicine (just incase) through her feeding tube.  She has been weaned from her pain med, sedation, blood pressure, lipids, and many other medicines!  These medicines were all given through IV's...which she had in each foot, her head, and both hands because many of the medicines and fluids couldn't be administered in the same sight as other medicines -- now she is finally IV free!!   Being IV free is amazing because IV sights don't last forever, so every so often a sight would stop working and they would have to relocate the IV to a different part of her body, which meant poking her with needles...a lot.  Not fun!   Anyway, yesterday they also took out the PICC line that was in her leg!  Now the only thing on her legs/feet is her O2 monitor on her foot, which is just a glowing light that doesn't hurt her, the oxygen in her nose, and her feeding tube. 



 Before the lines were removed (usually they are more neat...this was minutes after surgery) and after the lines were removed!

Another big event that happened yesterday was that they turned down the flow of her comfort flow oxygen!  She was getting 4 liters of pressure and now they have turned it down to 2 liters.  Makenna handled this change wonderfully and her stats didn't fluctuate at all!  Tomorrow or Monday the nurse practitioners are going to meet with Dr. Kays to discuss a weaning plan to get her off the comfort flow and onto regular nasal cannula oxygen.  I can't believe she has only been on the comfort flow for a week and they are already talking about weaning her off of it!  As of now it sounds as though they plan to send Makenna home on the regular oxygen, which means that once she gets onto the regular oxygen the only thing left for her to do is master feeding and than we can go home!

To master feeding she needs to receive full feeds from either nursing or a bottle, keep her milk down, and consistently gain weight from her feedings.  Once she can do all of these things we are outta here!

Atelectasis...?

As usual the recovery from CDH is a rollercoaster.  Goods days followed by scary days....and this week was no exception!  The night after being extubated and officially weaned from her pain meds and sedation completely, Makenna had a very rocky night.  She began throwing fits and became inconsolable (possibly as a result of withdrawing from the medicine).  The nurses tried everything, but they just couldn't get her to calm down.  With a healthy baby, this wouldn't be a big deal, but Makenna's lungs still didn't have the strength to handle crying for extended periods of time.  Her SPO2 sats began to drop and her rate of breathing began to increase.  A healthy baby might breathe 30 to 40 times a minute, whereas a baby with lung issues like Makenna is expected to breathe faster (about 50 to 60 times), but she was actually breathing between 100 to 130 times a minute. 

They ordered an X-ray to see what was wrong and realized that her left lung (the "good" lung) was experiencing "atelectasis," aka it partially or fully collapsed.  They said that most babies get passed around a lot and experience sitting and laying in different positions (in swings, bouncers, car seats, etc.), but sick babies spend a lot of time laying in one position, especially when they've been on ECMO for 1/3 of their life, so it is not unusual.  They also said that her good lung had to work harder to compensate for the other lung and that puts more strain on the lung which can make it get tired and stop functioning correctly.  They began patting her on the back every few hours and using a vibrator to shake her lungs.  They also started positioning her mostly on her right side to relieve pressure off her left lung and set her comfort flow to 4 liters (this provides a flow of air to help keep her lungs open).  I helped by holding her a lot and keeping her as calm as I could so that her lungs could concentrate on breathing, rather than recovering from being worked up after fussing and crying. 

By the next morning her stats were back up and her respiratory was a little lower (in the 60 to 70).  There amazing techniques worked again!  Makenna is so lucky to have such an amazing staff taking care of her! 

Cuddle Bug!

On November 5th, when Makenna was 25 days old, we were allowed to hold her for the first time!  I know holding your baby for the first time is always an incredible experience, but when you've had a "look but don't hold" policy for 25 days, it is 25x more exciting!!! 

Holding her was just perfect and I was so thrilled to discover that she enjoyed it as much as I did!  It was definitely extra special to be able to look down and see her cute little face and big alert eyes staring back at me.  But I also did my share of staring at her too.  I spent about 6 hours rocking her, just staring in awe at the miracle in my arms.  I always knew in my heart we would get to this point, but with her rocky start and critical condition, it wasn't always a guarantee.  Words can't describe how good it feels to know that my baby is getting better.  Now it isn't a matter of IF she will come home, but when.  AMAZING. 

 

The hard thing about having a critically sick child in the NICU is that they don't really under the concept of "mom" right away.  Even though I always felt connected to her, I don't think she felt that same connection to me.  I wasn't the first person she saw after birth, I never got to hold her or nurse her, and aside from changing a few diapers here or there I didn't get to do any of the usual "mom" things.  To her I was just another one of many people that talk to her throughout the day, sure I was there a lot, but so are her nurses...and they were able to hold her and interact more than I was. However, now that I can hold her I can tell that she is learning that I am someone special and this is such an amazing feeling! 


Other than being able to hold her, extubation has a few other fun perks!  She is know longer being sedated and it able to move around more!  As a result Makenna was able to get out of her "ECMO bed" and into a more safe big girl crib!  She looked so big in the ECMO bed, but now that she is in the crib she is back to being my little 7.01 pound baby!  

She put her arm around her bear all by herself!

Also, with the ventilator gone they could remove the arterial line from her arm.  This meant that she was finally able to wear clothes!  It was so fun dressing her for the first time.  :)  She wore this really cute "bubble" onesie with hearts.  It was a size 3 months (8-12lb), so it was slightly big on my skinny little girl, but it was OH SO CUTE!  It is amazing how getting rid of a vent, putting her in a crib, and dressing her in clothes can make her look so much more healthy and strong.  It is just a great reminder as to how far she has come in the last 26 days!  I know I saw it a lot...but my daughter is amazing.  Absolutely amazing. 

Staring at me!

 

Shows how small she really is!

 

Extubation!

On November 2nd they lowered Makenna's ventilator setting to 6 breaths a minute and 40% oxygen.  Dr. Kays told us that if her blood gases looked good with these setting all night, they would extubate in the morning!  This was the best news we'd heard in a while because it meant that her little body is getting stronger and that she is starting to get the hang of this whole "breathing" thing!  By the next day Makenna proved she was ready to get off the vent, so at 1:30pm the respiratory tech arrived to remove the vent! It was such an exciting moment that marked huge growth.  I don't think most people realize just how sick our sweet baby was at birth. At 27 hours old, after attempting to stabilize her for hours, she nearly died and had to be put on life support (ECMO) immediately. Now at 24 days old she has already come off ECMO and was about to come off the vent -- that's huge progress!  Dr. Kays and Joy both stopped by to oversee the extubation and be there for Makenna's big moment.  They both had big smiles on their faces the entire time.  I could tell they were as excited as we were to finally see the tube removed!



Last picture with the vent!

Once they removed the tube from her mouth (and all the tape that goes along with it), we were able to see her face for the first time ever!  Even the day she was born we didn't see her face because she was immediately intubated, so it was extra special to be able to see her cute chubby cheeks and sweet little lips!   She is so absolutely adorable and so incredibly perfect.  I just can't stop staring at my beautiful little fighting miracle. 

After she was extubated they placed nasal cannulas in her nose and hooked her up to a machine called "high-flow oxygen" or a "comfort flow."  This machine is similar to a CPAP-- it provides oxygen and positive airway pressure to keep her lungs open.  She will stay on this machine until her lungs no longer need the positive air way pressure and then she will be weaned down to regular nasal cannula oxygen. 

Also, since the vent is gone, they were able to remove the arterial line in her arm and the monitors on her head and back.  It is always really fun to see lines start to disappear! 

There are still many challenges to overcome and the nurses describe the rest of this process as "watching the grass grow" because everything from here on out is so slow going, but for today we are celebrating this big step forward!

Oh---and did I mention that tomorrow we will get to hold her for the first time?!  <3 <3 <3

 

Now that the vent is gone, she can use a pacy!

I never knew a mouth could be so adorable!  :-)

Big Progress!

So sorry for the lack of updates lately!  After a couple scary weeks, this week has been much more enjoyable and we have even been able to catch up on a little much needed sleep here and there.  It's kind of funny...you'd assume since we don't actually have Makenna at home with us during the night that we'd be sleeping pretty well, but that is just not the case.  I still have to pump in the middle of the night whether she is here or not, so in that regard it is essentially like having her home...only way worse because I am awaked by an obnoxious alarm (rather than crying) and the unfortunate reality that instead of seeing her beautiful face for 20 minutes, I get to look at a pump!  It's okay though because I know that my milk is the absolute best thing for her---it is totally worth the aggravation of pumping every 2 to 3 hours!

During the day we spend our time going to and from the hospital.  When we aren't there...our every thought is inevitably consumed by her....and that stress can become so draining.  We realized last night that we have been here for 23 days, although other than Rex seeing a movie with my dad and us both taking Sadie to the dog park, the only other thing we have done besides the hospital is eat---and honestly I wouldn't have it any other way.  I love every second I get to spend with my sweet girl, even if all I am doing is staring at her while she sleeps. 

That being said, we definitely spent the first two weeks of her life running on pure adrenaline, faith, and love.  We worried every step of the way...during her birth, ECMO, surgery, and during all the other scary things that have popped up---it was so mentally and physically exhausting to worry all the time (while recovering from child birth), pumping constantly, and having to go to and from the hospital every day.  Leaving her there every night will never feel normal and never be easy.  But we have finally reached the point where the "scariest" times are behind us and now she just needs to be weaned from the medicines and machines that kept her alive for the first two weeks and recover from her major surgery.  Until then, we can finally relax a little bit and begin experiencing fun milestones!

MILESTONES!
This week came with several fun and exciting milestones!

As of 10/27 our baby girl weighed 7.19lbs (she was 6.67lbs at birth).  Any weight gain is great, especially since all babies tend to loose a little weight after birth.

On this day she was also moved to her own private room.  Her previous space was out in the open and is considered a surgical space.  Since she already had her surgery and another baby was born that needed surgery, she was moved to the only other space that could meet her needs---an isolation room. Now she has 3 solid walls and a glass door entrance.  There is also a curtain that can be closed for privacy, which allows me to pump in her room. 

On 10/28 she was able to wear a real bow for the first time!  This means we are one step closer to actual clothes!!

On 10/29 --- her original due date --- I got to "lift" her for the first time!  They needed to change her sheets, so I was able to hold her in my hands for the minute or two it took for them to do that.  We also were able to give her kisses for the first time.  What a special day!

 

She also got to experience laying on her belly for the first time.  It was so cute to see her little bottom in the air and she looked so comfortable!  The doctors say it is always a good sign when babies are finally well enough to tolerate this position!

On 10/30, when she was 20 days old they were finally able to wash her hair for the first time!  Her hair is so dark, shiny, long and beautiful!  

She also was able to have her first feed!  Up until now she was only getting fats and lipids through IV's for nutrition, so giving her actual breast milk for the first time was particularly exciting!  It is great to know that her body will be getting great nutrition and that I am the only one who is able to provide this for her because I am her mom. Up until now her "medical mommies (and medical daddy)" provide the majority of care for her, but this is one thing that only I can give her!  She is going to start by getting 4cc (about a medicine syringe worth) of milk every 3 hours through a tube that goes to her stomach.  Eventually the quantity will be increased and then they will begin attempting bottles.  Kids with CDH have a lot of trouble with feedings because of increased acid reflux, trouble digesting food due to organs being "rearranged," lack of exposure of eating early in life, and because they do not have any positive experiences involving their mouths.  Right now her mouth has been continuously used for tubes and ventilators...they also stick a "spit sucker" in her mouth every 4 hours to get rid of the saliva and mucus that builds up.  It takes time for them to learn that not everything that goes in their mouth is bad!

WHAT'S NEXT!?
This week has been all about weaning!  They weaned her off of the nitric oxide on Friday and she handled it like a pro.  Her stats didn't drop at all.  The doctors said they had never seen a DH baby that was able to oxygenate their blood but not get rid of CO2.  They weren't really even sure what to do.  So they used their amazing medical minds to quickly come up with a plan of action...they tried nitric oxide, Viagra, and changing her vent settings.  Thankfully one of those things or a combination of two or more things worked like a charm!  This allowed her to come off the nitric pretty quickly.

Once they got her CO2 figured out they were able to begin weaning the flow of her ventilator.  As of Friday the vent was doing 100% of the breathing for her.  It was taking 70 breaths for her per minute and providing 46% oxygen.  Her body could take breaths on it's own if it wanted to, but it didn't need to in order to get what it needed.  In order to come off of the ventilator and show she is ready for nasal cannula oxygen, the machine has to be down to 8 breaths a minute and 30ish% oxygen.  This process could be pretty fast or it could be slow, it all depends on Makenna and how quickly her lungs are able to begin taking over the workload. 

Thankfully Makenna seems determined to get off the ventilator and has been doing pretty well.  Dr. Kays and his fellows started by lowering the breaths/oxygen as they saw fit, but then on 10/29 they developed a plan.  Every 8 hours (at 6am, 2pm, and 10pm) they draw blood and check her blood gasses.  This tells them how well she is oxygenating her blood and whether or not she is getting rid of the CO2.  The plan is that if her blood gas numbers look good they will lower her breaths per minute by 4 and her O2 by 2.  As of now her breaths per minute is set to 34 and she is on 36% oxygen.  We are hoping that at 10pm it is lowered to 30, but we will see---they weren't able to lower her at 2pm due to her numbers being slightly elevated.  Either way, our baby girl is doing great and they may begin talking about extubation during the weekend or on Monday if she keeps up this pace!!  It will be so nice to finally say "bye-bye" to the vent, but we are on Makenna time and only time will tell when she will be ready to make this big step! 

They have also started lowering the dosage of several medicines she's been getting since birth, including her pain, sedation, and blood pressure medicine.  This allows her to be less medicated and act more like a real baby.  She is definitely a little bit more fussy during hands-on time and moves more too, simply because she is in less of a fog.  I don't like when she cries, especially since you can't hear it and the monitors start beeping because her heart-rate is going up so high, but I have to keep reminding myself that healthy babies cry!  Every day she is one step closer to being a healthy baby!

CO2 Scare!

Having a child with a diaphragmatic hernia is definitely a roller coaster.  She is only 12 days old, but we've already experienced our share of exciting ups (her birth, seeing her eyes, getting off ECMO, changing her diaper...) and scary downs (going on ECMO, clots in the line, the repair surgery...).  So realistically we knew getting surgery behind us wouldn't be the end of the wild ride, but we were hoping and praying that the downs would start being few and far between.  

That being said, Dr. Kays warned us that the first 48 hours after surgery would be rocky and we quickly discovered that he wasn't kidding.  Makenna's stats were pretty good on Monday; however, by Tuesday her body started having trouble getting rid of carbon dioxide.  She was able to breathe in oxygen with the help of the ventilator, but she wasn't expelling the CO2 appropriately.  A healthy baby should have CO2 levels between 30 and 40 while a baby on a vent usually has levels between 50 and 60.   Makenna's blood gas measured her level to be 78.  They decided to remove her ossilator and put her back on the regular ventilator.  After this change we waited an hour for another blood gas to be taken.  This time it was 76---better but not great.  They made more changes, we waited two more hours, and discovered it was 74--they were happy the numbers were creeping down, but it just wasn't low enough.  The process of attempting to find the right vent setting continued throughout the day and into the night (so stressful)! Although, suddenly at about 8pm the numbers started creeping in the wrong direction.  They went from 74 to 84 and then by 3am they were up to 95---triple the "normal level" for a baby off a vent and double for a baby on a vent.  What worried us more than anything was the fact that they were supposed to do surgery to take the ECMO cannulas out of her neck, but because of these numbers they decided to postpone the procedure.  They wanted to leave the cannulas there incase they couldn't get the levels under control and she needed to go back on ECMO.  Not good, although the Dr. assured us that while her CO2 levels were undesirable, this is something they do see often with DH babies.  They also said that they didn't foresee a need to go back on ECMO, it is just a precaution, so that helped---a little. 

On Thursday it was crucial that they get the levels down to avoid ECMO, so they decided to put her on nitric oxide.  From my very basic understanding the nitric oxide helps dilate the vessels in the lungs and allows them to do their job more effectively.  They attempted nitric oxide with her when she was 1 day old to avoid going on ECMO, but it didn't work and she ended up on ECMO the next day.  I worried that we would have repeat results.  Thankfully this time we started seeing an improvement immediately and her levels started creeping back down.  They then did the surgery to remove her ECMO cannulas (YAY!).  I can't believe my 14 day old baby has already had *5* surgeries.  She is definitely an amazing and strong little girl. 

By Friday her blood gas was down to 65 and they began slowly weaning her off the nitric oxide.  It started out at 20 parts per million then went to 1 part per million.  Even with this drastic reduction her blood gas came down to 41!   We hope she can maintain these levels once the nitric oxide is removed, but for now I am proud of my baby.  She had a good day today.  Her stats were all good and she spent several chunks of the day with her eyes open and very alert.  This whole CDH process is so slow and tedious.  Lots of ups and downs.  It is hard to see the progress she is making, but I have to just keep reminding myself that even on days she has "downs," she is still making huge strides towards getting better and coming home. 

Wide awake after her ECMO cannulas were removed!



Words can't describe how much I love this little miracle! 

Surgery Day? Maybe?

Monday morning we woke up still not sure if today would be the day for Makenna's surgery.  We called the NICU and they said that her surgery was schedule to begin in 30 minutes.  We raced to the NICU hoping we would at least get to see her for a minute or two before it was time to begin.  When we got there they told us that another baby was just brought in and needed Dr. Kays for emergency surgery, which meant Makenna's surgery was pushed back.  Part of me was disappointed because I just wanted the repair surgery to finally be over, but part of me was very thankful to have a little more time with my baby before her big day.  They allowed us to stay with her until 11:30 when it was time to began prepping her for surgery.  Thankfully they are able to preform the surgery inside the NICU so she didn't have to be moved, but unfortunately that meant anyone in her side of the NICU must leave.  So while we were sitting in the waiting room waiting for her surgery to be over, a few other families were also waiting for her surgery to be over as well. We began talking to the other families in the waiting room and doing anything we could to keep our nerves at bay the best we could as we started our long 4 hour wait.  But I must admit we were both very worried about our sick little 11 day old baby, even though we knew she was truly in the hands of the best pediatric CDH surgeon in the country and his team, all of whom are also very experienced in the repair of CDH.  While we waited they were very good about coming out and giving us updates along the way, this also helped keep the "what ifs" out of our minds.  

The surgery is actually pretty straight forward, but that doesn't mean it is easy or without risks!  What they essentially do is make an incision (about 2.5 inches) along we rib cage, take the organs out of her chest and return them to her belly where they belong, close the hole in her diaphragm using a gortex patch, and then close the incision. 

During the surgery they discovered that Makenna was in fact much more sick than they had originally thought, hence the need for ECMO.  If you remember they had estimated the likelihood that she would need ECMO to be about 10%, but she ended up needing it to save her life after just 24 hours.  This was our first clue that her CDH was more severe; however, before the surgery they didn't know why or to what extent.  Once they opened her up they discovered that in actuality she only had about half of her diaphragm, so all of her intestines and half of her liver were able to travel up through her hole into her chest.  Also, since she had so much in her chest, her right lung growth was restricted and it is only about 1/3 of normal size.  All of this means that on the CDH spectrum, what they thought was a mild/moderate CDH (right-side, liver down), is actually one of the more severe types (right-side, liver up).  The liver is very dense so it restricts lung growth more than soft organs (like the intestines) and it doesn't like being moved, where as other organs don't mind being relocated. 

Thankfully we knew about Makenna's CDH ahead of time and were able to get to Shands before she was born.  This allowed her to be under the care of Dr. Kays from the beginning.  He is a miracle worker and he put everything back where it belonged.  I seriously can't explain how thankful we are for Dr. Kays, his wonderful fellows/partners, nurses, and the rest of his team.  Their devotion to CDH literally saved our babies life.  We are also equally as thankful to everyone who has been thinking about and praying for our little miracle this whole time.  You also had a hand in saving her life!

After surgery they removed a sensor from her hand--so we could hold her hand for the first time!  :)

Holding her daddies hand after surgery!

Holding my hand!

48 Hours

After her 9 day run on ECMO we were told that we would wait 48 hours to see if her body could handle the lack of support and breathe with only the ventilator before they would consider doing her repair surgery. 

During the first few hours they weren't 100% thrilled with her stats, so they decided to switch her ventilator to a different kind of ventilator called an oscillator.  The traditional ventilator inflates and deflates the lungs in a way that mimics the human body, while the oscillator vibrates the lungs really quickly without allowing them to ever deflate.  It wasn't a major change and they were very casual about it, but we were still worried that this might be a sign that she may need to go back on ECMO.  ECMO is wonderful and it saved her life...but we still didn't want her to ever need it again!

Once the ventilator was switched out we spent the next two days just waiting to see what would happen.  Every time her blood pressure would drop near 40 or her CO2 would drop/rise, we worried; however, the nurses and the doctors just adjusted her medicine as needed and continued to monitor her business as usual. 

During her first 48 hours off ECMO Makenna also seemed more responsive.  I don't know if she was feeling better or if she was beginning to build a slight resistance to the sedation medicine she'd been getting since birth, but she was moving more and opening her eyes for longer stretches of time (10-15 mins at a time).  She started becoming a little bit more bothered by the tube down her throat and began sucking and gaging on it a lot.  She also seemed a little bit more aware of her surroundings, she would cry (without sound because the ventilator interferes with her vocal cords) and become visibly upset during hands-on time or when the environment got too noisy.  It broke my heart to see her so uncomfortable and not be able to hold or soothe her.  As much as parents hate hearing the baby cry and probably wish their baby came with a mute button, it is much worse when your baby physically can't cry but you can see the crying look on their face.  As much as I loved seeing her beautiful eyes open, I almost wished she would go back to peaceful sleep so she wouldn't have to feel any pain, fear, or discomfort.  Thankfully her nurses are all fabulous and do a really good job of keeping her as comfortable as possible. 

When we left the hospital on Sunday night we still weren't sure if she would have surgery the next morning.  That was especially hard.  Naturally you want to mentally prepare yourself for "the big day" and we couldn't really do that because we didn't really know when the big day would be.  We were hopeful that it would be Monday though!

Bye-Bye ECMO

Day 7 (10/17/13):
On day 7 of ECMO (8 days old), they decided to begin the process of getting Makenna off of ECMO.  They turned the flow of the machine down to 150 and because they had been administering her medicine through the ECMO machine, they needed to do a procedure to install a PICC line in her leg.  Now once the machine is gone they can still give her medicine through these lines.  By this evening they had lowered her flow to 100.  If she handled this setting all night, she would come off ECMO the next day!

Day 8 (10/18/13):
Makenna handled the flow of 100 well, so on day 8 of ECMO they decided she was ready to come off!  However, one caveat that scared us all is that if they couldn't get her stable off of ECMO they would have to change out her whole ECMO circuit, which would mean going back to a flow of 300 and starting the whole process over again (aka going back several days in her recovery process).  Up until this point the ECMO was not only doing 100% of the breathing for her, it was also adding oxygen to her blood and removing the carbon dioxide.  She was getting daily blood transfusions, blood platelets, and plasma.  The ECMO was also helping to regulating her temperature by warming the blood.  We were hopeful that her body could handle doing these things on its own, but we knew it was asking a lot of her little body, especially since it wasn't able to do these things just 7 days earlier! 

At about 12pm the whole crew arrived to take her off.  They began by clamping the line so that the flow would stop and then they watched her stats to see if she could handle it.  The whole process only took about half an hour, but when you are sitting in the waiting room that feels like forever!  After Makenna's line had been clamped for a few minutes her stats dropped and they determined that her lungs weren't able to handle being off the machine just yet.  They decided to give her Viagra for a few hours and see if that would be enough to improve her lung function.  We were definitely disappointed that she couldn't come off, ECMO is a scary machine that can cause scary complications, every day she is on it there is a chance something could go terribly wrong.  We knew that there is a full-time ECMO tech sitting there watching the machine 24 hours a day to make sure nothing happens, but unfortunately even with the tech, some things are just out of there control.  Also, we were worried that she may not be able to come off the machine at all and would need to have surgery while on ECMO.  This would be extra risky since the machine uses heprin to thin her blood, surgery while on blood thinners brings extra risks!

At 5:30pm after a few hours of rest and Viagra they tried again.  This involved another long stressful wait, but unfortunately in the end she just wasn't ready.  Her body wasn't getting rid of enough carbon dioxide, so they had to put her back on the machine.  They upped the flow back to 200 and decided to try one more time in the morning.  In the meantime they gave her cortisone steroid shots to help give her lungs a little added support.  If these things didn't work, they would have to change the circuit and up the flow to 300. 

Day 9 (10/19/13):
At 10:00am they began their third attempt to get her off of ECMO.  Rex and I sat nervously in the waiting room hoping and praying that the third time would be the charm.  Rex (a computer programmer) even wore what we hoped would be a lucky shirt.   It said "If at first you don't succeed, try and try again!" in programmer speak.  :)

 

After a long 1 hour wait, they finally said we could go back.  Thankfully when we got back there our beautiful baby girl was finally off of ECMO.  Dr. Kays was still in there and we were able to talk to him about her progress.  He seemed pleased with how she was doing, but he was still slightly concerned about he carbon dioxide levels and blood pressure.  He said they would watch her for 48 hours to give her body a chance to adjust to its new workload and for the heprin to work its way out of her blood. If she is still stable on Monday he will do the repair surgery; however, there is a chance that the next 48 hours will prove too much for her and she could go back on ECMO.  They left the cannulas in her neck just incase, but we are hoping and praying that they don't have to use them again!

 

Either way, for today we were very happy to see them pack the ECMO into a biohazard box so that we could officially say BYE-BYE ECMO!

 

 

 

 

   

 

Oh ECMO

Day 1 (10/11/13)
Makenna responded really well to ECMO right from the beginning.  Her color looks so much better and her blood pressure and blood gases improved dramatically as well.  The machine is allowing her body to rest and get stronger, which is a good thing, but it also indicates just how sick our sweet baby really is.

Day 2: (10/12/13)
On day two of ECMO I was able to touch her for the first time.  Babies are stimulated by touch and while most babies can handle this stimulation, Makenna's body needs to use it's energy to get better.  As a result we can only touch her in certain ways, for example we are allowed to rest our hand against her leg.  We can't stroke or "pet" her and definitely can't hold her.  Her nurse are also only allowed to touch her as little as possible.  Every 4 hours they have a "hands-on time" where they will suction her nose, change her diaper, check her temperature, switch her position, etc..  This is like her workout and then she spends the next 4 hours sleeping, they won't touch her again until the next hands-on time unless it is necessary.     

Day 3: (10/13/13)
On day 3 of ECMO the ECMO techs noticed that Makenna had several large clots in her tube.  The clots looked like stringy octopi and were collecting blood platelets quickly.  The doctors had never seen clots develop like this before and sent them to pathology to be checked.  They also needed to remove the clots from the lines.  To do this they needed to remove her from ECMO completely for 5 minutes, clean out the lines, and then put her back on ECMO.  While she was off ECMO she used the ventilator to breathe.  This was scary because for the last 3 days the ECMO was doing 100% of the breathing for her and we weren't sure if the ventilator would provide enough support (wasn't enough 3 days ago).  Thankfully she handled being on the ventilator like a pro for the whole 5 minutes!

 

 

Day 4:  (10/14/13)
On day 4 you could really see edema start to form.  She is sedated and needs rest so she spends a lot of time laying on her back, which causes fluid to collect.  They have been giving her medicine to help eliminate the excess fluids and have been turning her on her side to help move the fluid around.  Also because she handled being off ECMO for 5 minutes the day before they decided to lower her ECMO flow from 300 to 275.  It is a small change, but a change in the right direction!

Day 5: (10/15/13)
Makenna handled lowering the ECMO setting well yesterday, so today they lowered it again to 250---again she handled it well again!  Also on this day we had another special milestone!  I was able to change her diaper for the first time!  Other than pumping milk (that she can't drink yet), this was the first real "mommy" thing I got to do---so it was extra special. 

While I was changing her diaper she opened her eyes and looked at me for the first time.  Until this point I have never seen her eyes open in person (only in a picture taken by Rex the day she was born) and she had never seen me before either.  It was definitely an extra special day I will remember forever!!  :-)

 
Day 6 (10/16/13):
Today they turned her ECMO setting down again from 250 to 200!  To come off ECMO she needs to be around 150, so she is very close!  Tomorrow Dr. Kays will be getting back in town and he will decide if she is ready to come off ECMO completely.  If she is, he will also decide when she will be ready for surgery.

ECMO

At 4:35am we were awakened to a call we definitely didn't see coming.  Makenna's stats had been dropping all night and no matter what intervention they tried, her poor little lungs just weren't big enough or strong enough to sustain her any longer.  After many efforts, Dr. Kays made the decision to place Makenna on ECMO.

What is ECMO?
ECMO is a lung and heart by-pass machine that can be used for a long period of time.  There are two cannulas that are surgically connected to blood vessels in Makenna's neck (the blood vessels connect to her heart/bloodstream).  The cannulas have tubes, one tube takes the blood from Makenna's body and enters a machine that adds oxygen to the blood and removes carbon dioxide, then the blood travels back to her body through another tube.  This lets her lungs and her heart both rest.  There are a lot of risks involved in this process including blood clots (that can lead to strokes/embolisms) and internal bleeding (they give her blood thinners to reduce the risk of clots).

Because ECMO is so risky they have an ECMO tech assigned to the machine at all times (day and night).  Their job is to watch the numbers, check for clots every hour, and remove clots when they form (along with lots of other "medical things" I don't understand!). 

The ECMO tech can also control how fast/slow the blood flows through the tubes.  They started Makenna at a flow of 300 (I believe it goes as fast as 400).  The machine was doing 100% of the "breathing" for her so her lungs could rest; however, she is still hooked up to the ventilator so that her lungs will continue to inflate/deflate.  This helps them practice breathing and keeps her lungs from collapsing.  To be ready to come off ECMO she will need her flow to be around 150.  They will slowly lower her setting as her stats indicate she can handle it.

Surgery: 
Once we received the call that she needed to go on ECMO we immediately went to the NICU to see her.  We were still sleeping in the hospital, so it didn't take long.  When we got there we talked to one of the doctors and she said that Makenna was doing so poorly they need to get her on ECMO immediately or she wouldn't make it. They said hooking up to ECMO would take about an hour and since she was being prepped for surgery we weren't able to see her.  We went back to my hospital room and began what felt like the longest wait of our lives.  4 hours later we finally received the news that Makenna's surgery went well and to quote Dr. Kays "This kid likes ECMO."  He also said that only time will tell how long she will need to be on ECMO.  It could be a little as a week or as much as 3 weeks and that her surgery most likely wouldn't happen until she was off ECMO because the blood thinners make surgery even more risky. 

The ECMO machine (the tubes are red because of blood)

Makenna after surgery