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!  :-)