Amazing Grace

Everly is already 5 1/2 months old!  I apologize that I haven't posted a blog in quite a long time, because well...I have a 5 1/2 month old! It has been an absolute JOY to get to take care of Everly at home, and Brad and I are continually amazed how well she's doing all things considered.

A couple other PRS babies have been born in Charlotte in the past few months, who've also needed jaw distraction.  This is extremely unlikely, given that it's only seen in about 1 in 15,000 live births, and it's heartbreaking to hear that neither of the other PRS babies are now doing very well.  While Pierre Robin Sequence is actually is believed to occur more often than 1 in 15,000, there is a disturbingly high 'pregnancy termination' rate (AKA aborting one's own child because their imperfections make their life worthless?) when PRS is discovered in utero.  After having talked to the parents of a couple of these PRS babies, and to our surgeon who is also treating the other PRS babies, it's apparent that Evie's ability to breathe and eat on her own after being extubated from the ventilator post-surgery, was nothing short of a miracle.  Which goes to show the power of prayer. So to the hundreds of people across the country who've prayed for our sweet girl, we humbly say thank you.  We trust that there's a great plan for Everly's life, and we thank you for selflessly choosing to be a part of it.

The past few months have gone entirely too fast, a whirlwind of doctor appointments, road trips, baby cuddles, and sleepless nights (thanks to a baby that still doesn't sleep more than three hours at a time at night).  While we're dreading her next surgery on August 13th, we're also very anxious to get it over with. The surgeon may be able to completely close the cleft palate then, but will not know if there is enough tissue in Ev's mouth to do so until he cuts into it during the surgery.  If he does not have enough tissue to completely close the palate up to the gum line, then he will close it as far as he can and then close the remaining cleft in a year or so, when more tissue has grown.  To minimize her exposure to anesthesia at such a young age, we'll also be having an ENT put tubes in her ears during the August surgery, which will 'hopefully' remedy her hearing impairment.  After that surgery we anticipate Evie to need long-term speech therapy and extensive orthodontic work due to her missing teeth and micrognathia.  We continue to pray that the anesthesia as well as the drugs used for her long induced coma as a newborn, will have minimal impact long-term on her brain.

I believe that God made babies who'd need extra work, extra cute. Evie has had and will have challenges, but hey, what kid doesn't? Sometimes I look at her and I think we are the luckiest parents ever. We have this ridiculously adorable baby (I might be just slightly biased), and other than her craniofacial abnormalities, she is healthy. Her heart, lungs, kidneys, and liver function as they should. She reaches for toys, smiles at faces, and wants to be cuddled 24/7.  We often think about the parents who never were able to take their babies home from the hospital, and as we hurt for parents who will forever wonder what their child would have been, we feel immensely grateful that we're able to see our daughter growing up. She is, actually, pretty darn perfect.  I wonder if that's how God sees us...that he sees past our impediments and flaws and cherishes the fact that we're his?!

Thank you, thank you, thank you sweet friends for all love! 

 

 

  

 

Just another day at the baby beauty salon

 

 

 

Sweet Home Carolina

I’ve heard it said that life is ‘about the journey, not the destination’,  but I feel compelled to disagree.  The journey from Everly’s birth to getting home was horrible, but arriving home was glorious.   On February 13^th, Charlotte experienced a extremely rare snowmaggedon that resulted in over eight inches ice and snow.  North Carolina was declared to be in a state of emergency, with the governor urging people to stay at home.  Restaurants were closed and employers told their workers to stay at home.  And in perfect irony, after everything Everly went through, her discharge occurred during this ‘once every hundred years’ storm.  As Brad and I debated whether to try to make it home,  Evie laid in her steel hospital bed crying inconsolably.  A neonatologist then came over to us to tell us they would postpone her discharge since it appeared from her fussiness that she was going through morphine withdrawal and would likely need methadone, which would take another seven days in the hospital to run its course.  Our jaws dropped, and as soon as that doctor’s shift was done and he left, we talked to another doctor who agreed with our assessment that she had no other symptoms of withdrawal and he’d therefore sign off on her discharge.  Deciding we had to get her out before someone else interpreted her crying as withdrawal, we decided to make a run for it.  So like any new rational parent, we made the long drive home skating on ice and remarking how unbelievable it was that she was finally come home with us!

Now at home, it’s impossible to take anything for granted.  What a genuine joy it is that we ‘get to’ wake up to feed her every three hours.  While understandably Evie hates when we have to frequently disinfect her distraction device with a combination of skin-stinging agents, I continually relish in how awesome it is that jaw distraction was possible to open up her throat so that she does not need a more permanent tracheostomy and feeding tube.  Our little girl, who was labeled ‘failure to thrive’ is now quickly gaining weight and eating with relentless vigor despite having a newly-placed tongue and having a steel bar going through her mouth.   So to the many, many people who prayed for her, thank you.  We view this all as a gift and see Everly as a sweet blessing we’ve been entrusted with.  We thank everyone for their prayers, friendship, and love as we continue to see her story unfold.

On Friday morning (after hours of no food - yikes!), Evie will have a CT scan done of her skull, to see how the newly expanded jaw bone is healing.  If she does not lay still for the scan, they will give her anesthesia, which of course makes us nervous since we already are concerned about the gross amount of drugs she was already exposed to in infancy.   If the bone has healed, she will have her distraction device removed on March 4^th, and will for the first time in her life be free of any monitor, IV, or metal!  Additionally, since she failed her hearing test in the NICU, we’ll be getting her hearing re-tested once the device is out to see if that helps her hearing. She then should not have to be in the hospital again until late this year for her cleft surgery, which we’re trying to avoid thinking about!  Once the cleft is fixed, she’ll likely need speech therapy as she gets older, and will need major dental work due to the lower jaw being so underdeveloped in utero.  These are all issues we’re happy to deal with now that Everly can at least eat and breathe!

Everly is seven weeks old today and we are astounded, tired, and yet overjoyed at having felt ‘pain in the night but joy in the morning’. (Psalm 30:5)    Thank you, thank you, thank you sweet friends for the many invaluable prayers for Everly!

After 37 long, hard days...peace out NICU!

Evie's first time home, in 8 inches of snow!



Daddy's little cupcake

A girl's gotta learn to accessorize!

 

 Grandpa D and E

 

 

Grace visualized:

This is the corner of the NICU she was in and was expected to stay, confined to her bed and tube fed for another two months...

Instead, this is where she eats from her bottle now!

What a sweet Valentine's Day it will be!

Everly’s first five weeks of life provided us with a crazy mix of excitement, grief, and anxiety.  This past weekend she showed us that she is every bit as strong-willed as her parents when on Friday she simply decided she was simply done with all her tubes.  Her body having built up tolerance and making her sedative and paralytic drugs much less effective, she became very frustrated trying to cry, clamping down in her throat on her ventilator and preventing it working properly.  By Saturday she was trying to pull it out herself, so to keep it at least a controlled extubation, a neonatologist removed the ventilator Saturday night and though  sore and raspy, she immediately started breathing and crying on her own.  On Sunday, the sutured threads were also removed from her tongue as it was determined that she was no longer at much risk for suffocation.  By Monday they also removed the picc line, and by Tuesday, her feeding tube was removed.  Once her monitor leads are removed, she will for the first time in her life, be free at last!

Based on her sugeon’s experience with jaw distraction and tongue surgery, he had advised that we prepare to be in the NICU for yet another one to two months post-op.  We also talked with another family who had the same surgery done here a couple years ago, and were disappointed to hear them confirm the anticipated extended stay based on their experience.  They’d run into the same feeding struggle as is seen with all Pierre Robin babies post-op, that because the tongue has been moved, it takes a great deal of time for a baby to coordinate swallowing along with how to use all of their newly-relocated tongue muscles.  And of course that effort is further complicated by having the steel distraction bar running through the bottom of the mouth.  In addition to the challenges of a new tongue and jaw, Everly was presented with the additional struggle of not being able to create any suction due to still having a full cleft.   So after being given the all-clear on Monday to begin the long journey of learning to eat, I filled up her special-needs Haberman bottle with hopes that she might be able to choke down just a few CC’s. 

That’s when the seeming miracle occurred.  Evie immediately started attacking the bottle, vigorously swallowing back the milk with perfect coordination.  I stopped her for a burp break and she screamed until I returned the bottle to her mouth.  Brad and I with mouths agape, watched as Everly finished every last bit of the 70 CC’s filled in the bottle.  Since she continued to eat well over the following day, we inquired about her next steps to her surgeon Dr. Matthews on his Tuesday visit.  His response nearly put us to tears: “Well, as I mentioned after surgery, I was pleasantly surprised by her dense bone structure which is unseen in an infant this young and has tremendously helped this distraction.  And to have a baby eat so well immediately after surgery is rather remarkable. Do you feel comfortable taking her home?”

And so it is, that we will be taking this ambitious little gal home tomorrow after 37 days in the NICU. She will still have the steel screws in her face until early March, to allow the newly extended lower mandible bone to harden.  She’ll also need to have another major surgery to have her cleft repaired and tubes put in her ears late this year. But today, with endless repetition we’ve commented how this seems to be too good to be true that we will be freed from the hospital nearly two months earlier than expected!!!  We will never know if her phenomenal outcome is due to her God-designed genes or the prayers of so many people, but I tend to think it’s a little bit of both.  And so, we thank everyone for the prayers and love so abundantly given to us. 

Everly will have a follow-up appointment with the surgeon next week in his office and then another appointment again early March when he returns from his upcoming trip abroad.  Which brings me to a unabashed plug:  Dr. Matthews is leaving on February 20^th to go to Jordan, where he will operate on children with severe craniofacial disfigurements.  As Jordan has some of the best healthcare in the Middle East, doctors from all over the region will be in Jordan to train under the tutelage of Dr. Matthews.  These doctors will then return to their home countries where they’ll hopefully be better equipped to help change the life trajectory of children with craniofacial disfigurements.  This cause is of great interest to our family, most obviously because we cannot imagine the pain of parents whose children are born with such birth defects and cannot find or afford the help needed for their children.  We now see the work of organizations like his, to be one of the most effective ways to show love to the Islamic world.  Helping suffering children and their hurting parents seems like a simple way to put our money where our Christian mouths are, for the Muslim world. 

 

Due to federal regulations, the foundation cannot receive any donations from companies and must rely solely on individual giving to provide surgeries and training in the Jordan.  Over the past month, many wonderful friends and family have asked us what, if anything, they could do to help.  Our answer is to shamelessly but humbly ask for anyone who feels inclined, to help the Craniofacial Children Foundation.   Because the 501-C organization is relatively new and time-constrained, they do not yet have a website for online giving. However, anyone else who would like to help in this cause can simply send a check to:

Craniofacial Children Foundation
C/O David Matthews
1719 South Blvd
Suite B
Charlotte NC 28203

P: 704-375-2955

Things we're looking forward to:

 

• Getting away from screaming monitors all over the NICU all day, every day!
• Removing Everly's constrictive monitors and taking her more than two feet from her bed!
• Taking Everly on her first car ride and letting her have her first view of the world outside the hospital!
• Sitting on the couch, instead of sticky vinyl chairs!
• Not having to spend three minutes scrubbing our chapped hands every time we want to see our daughter!
• Being able to start our life as a family!

Last day on a ventilator (and looking muuuch better than the previous week)



Last day with this annoying feeding tube!

Only one more day until I get out from behind bars!

 

 

 

Taking my car seat test so I can go home!

 

Day 24

Day twenty-four in the prison NICU and day six of baby girl being totally sedated and paralyzed.  I can’t decide what’s worse: that she cannot be held, that she is totally sedated and paralyzed, or her heartbreaking physical appearance right now.  Or perhaps it’s simply having to leave her in the hospital every night and drive home with an empty car seat.

Thursday’s surgery went as well as possible and she’s avoided any infection thus far.   Two of her major surgeries are now complete and God-willing, the next surgery late this year to close her cleft palate and put tubes in her ears, will be her last.  On Thursday January 30^th, the surgeon cut much of her tongue tissue to release the tongue to lay flat instead of pointing upwards over her airway.   Additionally, he performed surgery to break her lower jaw and place four pins in the jaw as well as a large distraction device outside the skin around the face to pull the pins apart.  As the pins are slowly cranked further apart now each day, the lower mandible is forced to build new bone to fill in the ever larger gap and eventually provide her with a bigger lower jaw.  As her lower mandible becomes bigger and comes forward, so too will her now flattened tongue also come forward and out of the back of her throat.   The steel device encompassing her face certainly looks prehistoric but we're grateful for this jaw distraction technology available only in the last decade, as previously a tracheostomy would have been the only option for someone with such an obstructed airway.   Here's a good article describing Pierre Robin Sequence and jaw distraction.

Now five days post-op, Evie has a large respirator giving her robotic breaths, and has threads sewn into her tongue as a tool that could be used to pull her tongue forward in case of choking.  Numerous times in the last few days, Brad and I have found ourselves panicked as we’ve watched her oxygen saturation and/or heart rate plummet as she’s turned various shades of gray.  We've learned that this happens most often because of either fluid build-up in the lungs or thick secretions blocking the respirator, since she is unable to clear drool or even produce tears due to the Vecuronium.  Right now she’s on a steady does of a sedatives, paralytics, and morphine, for which they’ll give her methadone when they eventually taper her off of, just as would be done for a baby born to a drug-addicted mom.    Once the full jaw distraction (AKA cranking the steel device with allen wrench to bring her chin forward) is complete, then her medical team will evaluate tapering down her drugs and extubating the respirator.  This should take place around Sunday, February 9^th, and we will finally be able to hold her again!

In spite of our repeated disappointment over the past month, we’re trying to acknowledge the blessings that exist. Not to be underestimated, we count our good fortune to take part in Brad’s company’s outstanding health insurance and therefore are spared from having the additional worry of her increasingly exorbitant medical costs.  And of course, it’s never far from my mind how unbelievably lucky we are to have had this baby in a first-world country, where we’re able to save her life; I have cried many times simply thinking about parents worldwide who without this type of intervention, would likely have to watch their child choke and suffocate.  We are also very appreciative for the love that we have received from family, friends, neighbors, and acquaintances from all walks of our lives. The meals at the hospitals as well as restaurant gift cards we’ve received, we’re especially grateful for since we’re never at home for mealtime!  Of greatest importance though, we feel great gratitude for the prayers that have kept us going.  We know that there are many, many people with far worse challenges than this, and it’s humbling therefore to know how many people care about this girl.


Prayers – a few of the things weighing heavy on our minds right now are:

-Genetic Chromosome Testing – Half the time Pierre Robin Sequence presents itself, it’s as part of another, more serious syndrome like Treacher Collins or Stickers Syndrome, which can cause both blindness and deafness.   We sent her test off her test two weeks ago and should now hear back any day whether she carries markers for a underlying syndrome.

-Blood Levels – Right now, Everly is bordering on anemia and is also vitamin D deficient, which is disadvantageous to her bone healing. I’m now taking aggressive amounts of D3 + K2 to pass to her and address her vitamin deficiency, and we are praying her red blood cell count improves organically so that she can avoid needing a blood transfusion.

-Extubation - We're cautiously optimistic that once the distraction is done and the respirator is removed, she will be able to breathe normally.  As soon as she's extubated though, we'll still have the hurdle of weaning her off all of the drugs and then the huge challenge trying to teach her how to eat again, still with a large cleft palate.

-Sanity – and we joke not… It’s important that Brad and I remain healthy and mentally sharp, to ensure we can make the best decisions regarding her care.  Brad is carrying an extraordinarily difficult load as along with this situation, as he is also trying to manage his very demanding newly-promoted position at work.

Since it's been almost a week since we've seen Everly awake and because she looks pretty darn rough right now, I keep looking at pictures of her in the few days before surgery. Here are a few of my favorites:
 



 

 

 "You're going to do whaaat to my pretty little face?"

 

 

 

 

 Her last full day, hopefully, of having to be on her stomach 24/7

 

 

 

The morning of jaw distraction and tongue surgery

 

 

 

Snuggles with mommy hours before surgery

Go-Time

We want to thank everyone for their love and prayers.  We breathed a huge sigh of relief last night when the ENT surgeon performed the laryngoscopy in front of us and showed us on the screen that her airway was open below her throat, so she does not need a tracheostomy.  Knowing her actual airway below the tongue is clear confirms that what is obstructing her airway is the combination of the cleft palate, recessed jaw, and upward-pointing tongue.  So now we need to move forward to address those three issues to clear the airway. Her surgeon, PRS expert Dr. Matthews, developed an internationally-used scale by which physicians can measure the severity of Pierre Robin Sequence.   10 mm between the upper and the lower gum line is considered severe and dangerous; Evie’s are 12 mm apart.   

 

While Brad and I were preparing for her to have to have jaw distraction, we were shocked to learn from the surgeon today that he thinks we need to move quickly and therefore she’ll be having the surgery tomorrow. As in Thursday, January 30^th at 4:30 PM.  In a way, it’s somewhat of a relief to be moving so quickly because it doesn’t allow us much time to build up fear and dread.  Everly will be intubated and anesthetized for about two hours as the surgeon breaks her jaw and then places the distraction device into her mandible, which long-term should result in four small scars on her face from the implants.   Additionally, Dr. Matthews will surgically release the tongue, cutting tissue to allow the tongue to come forward and lay more flatly, to lessen the obstruction of her airway.  She will then receive a picc-tube, which will serve as a more long-term IV port, in which she’ll receive all her medications. Some of these medications include antibiotics, narcotics, and paralytics to prevent her from moving for several days while her face heals.  She will be fed through her ng-feeding tube for the next week and her breathing will be done solely by a respirator, which will silent her cries should she ever be awake enough to do so.   

Adding a whole new level of heartache is the fact that we will be unable to hold or move her at all for the next week following the surgery.    After this next gruesome week is done and they believe the initial operation has healed, the respirator will be removed and she will have the large jaw distraction device begin moving her jaw forward day by day, then holding the jaw in place for about two weeks once the distraction has reached the proper distance.  In roughly four to six weeks, the distraction should hopefully be removed, and then the challenge of teaching how to eat all over again will begin.  As one kind nurse said to us as she moved us to a more quiet corner of the NICU with a window, “it’s going to be a long haul.”

As you can imagine, we are feeling overwhelmed to the point of nausea and are simply terrified for not just what we know will happen to our sweet girl, but also scared for what could happen.  There are significant risks involved with anesthetizing, intubating, and drugging a baby this young.  However, to protect her airway and life, we are left with no choice.  We pray that this surgery does indeed successfully bring her lower jaw forward and allow new bone to extend the jaw out, while also bringing the tongue forward and out of her throat.  We hope this surgery and procedure to be the worst thing we’ll endeavor, that she’ll be spared complications or infection, and that her body responds favorably to the hell we’re about to put her through. 

Crushed

Day twenty-one in the NICU and things have gone from bad to worse.  Much, much worse.

About a week ago, Brad and I became increasingly concerned and uncomfortable with Novant’s neonatologists’ approach to Everly.  Three different neonatologists (all who are part of the same group doing rounds at all the Novant hospitals) , after looking at her, had assured us she seemed to have a mild case of Pierre Robin Sequence, and thus that our goal was simply to get her eating revved up.   However we became doubtful of their guidance when we saw no progress being made after a couple weeks.  Also noticing her increasing respiratory struggle, we began pushing for answers and alternative options.  After exploring a transfer option to Novant Main, Levine Children’s, and to Duke Children’s, we inquired at Novant Matthews repeatedly about possibly transferring and were advised to stay put and be patient with Everly’s feedings.  Still disconcerted, I reached out to several parents around the country, whose children also had a ‘mild’ case of Pierre Robin Sequence. Many of these kind and helpful parents told us that a gastrostomy tube was their saving grace to get their child home and to allow the child to learn how to eat on their own in the comfort of their home.  We then inquired about the tube, and since the neonatologists seemed to have no better alternatives, they finally agreed that we could transfer to Novant’s Main Hospital, where pediatric surgeons could evaluate her for a g-tube.  Another reason we were anxious to move to Novant Main was that Everly would finally be seen in person by a world-renowned Pierre Robin plastic surgeon that we’d previously consulted with in his office while Evie had still be in the NICU.  Dr. David Matthews had impressed us by his conservative approach and extensive knowledge of PRS, so we hoped that his evaluation would match that of the neonatologists and we could simply proceed with trying to get her to eat.  And so, Everly’s first car ride was in an ambulance on January 27^th, from Novant Matthews to Novant Main in uptown Charlotte.  A fourth neonatologist helped arrange for a pediatric surgeon to look at her, and told us that we could likely have the g-tube surgery by the 29^th and potentially take her home within a week where we’d feed her through the tube.  We were nervous about the idea of anesthetizing and intubating our newborn to then implant a device in her, but little did we know at the time that her simply needing a g-tube would have been something we’d only dream of 24 hours later.

Our entire world was shattered that Tuesday night, when Dr. Matthews came to see her in person.  He immediately identified her Pierre Robin Sequence case as ‘extremely severe’ and raised several concerns about respiratory and feeding obstruction due to her tongue, and concern that she may additionally have soft tracheal tissue and be at risk for tracheal collapse.  As Brad and I began shaking at her bedside, we were given two possibilities for what she would next need: one, a tracheostomy or two, jaw distraction and tongue surgery.  So, the tentative plan is now:

1. She has had a 3d CT scan to get a better picture of her oral anatomy including the severity of her recessed lower jaw, cleft, and airway. We are awaiting Dr. Matthews’ review of that information.  This evening an ENT physician will scope her throat via a laryngoscopy  to determine her level of larynx and tracheal obstruction. If severe, she would require a tracheotsomy for at least the next two years simply to ensure she can breathe.   As you can imagine, we are presently beyond terrified for this consultation.

 

2. If she does not need a tracheostomy, we would instead have to have jaw distraction done. This is a barbaric procedure and is a last-resort type procedure used only when an infant’s airway and therefore life, is at risk:
1. Her jaw would be broken and they would insert a distraction device between the upper and lower mandible.  This exposes her to anesthesia and then narcotics, as she’d have a morphine drip for the intense pain
2. She would be on a respirator during the entire one to two week distraction process, which would disallow her to even be able to audibly cry
3. Over the course of one to two weeks, they would crank the device to bring the lower mandible forward. This is a painful procedure for the infant and requires a rather inhumane-looking device.
4. Once the jaw is brought forward, the distraction device would be left in for 2-3 weeks
5. The distraction device would then be removed via surgery, again exposing her to anesthesia.Image of Jaw Distraction
   
   
3. Tongue surgery will be performed at the same time as the initial jaw distraction surgery, to relax the tongue and bring it forward so that she could hopefully eat and not be at great of a risk for the tongue to obstruct the airway.

5. Around one year of age, she will also need major cleft repair. Because she was born with no hard palate and a cleft in her soft palate that is about twice the size of a traditional cleft palate, it will be major surgery to bring together her soft palate.  She would then just never have a hard palate.

It is beyond heart-breaking for us to think of the procedures, pain, and 2-3 month additional NICU stay Everly will now require.  She is an absolute cuddle bug, who usually cries only because she wants to be held. With her big beautiful eyes, head full of soft dark hair, and seeming aesthetic perfection to us, it is still hard to wrap our minds around the severity of her condition.   The thought of what we have to put her through is nauseating, and when we add to that the risks associated with infantile anesthesia, narcotics, and radiation, we find ourselves in a horrible nightmare that we cannot wake up from.

Prayers:

We are struggling with anger and bitterness with the entire group of  neonatologists whom misdiagnosed, mistreated, and gambled with Everly’s life for the last three weeks, all while also delaying any form of effective treatment for three weeks.   We’re now living in a constant state of panic and fear for the challenges ahead.  We find ourselves simply begging God to minimize her pain and discomfort, and right now and to help give us strength should we learn tonight that she needs a tracheostomy.

Day 14

Today is day fourteen for Everly in the hospital and I think she, Brad and I are all beyond exhausted.  Everly’s progress over the past week has been stagnant, and the ‘treatment plan’ if you will, has become experimental.  The neonatologists agreed to try letting me room-in here at the hospital in a labor and delivery room across from the NICU to test whether me providing consistency for her 24/7 will help her.   And because after I was discharged and we found the six nights we spent at home with her still in the NICU to be emotionally nauseating, I was all too happy to move back into the hospital.  Unfortunately, we’re now on day three of this test and don’t seem to be seeing a difference in her eating.  Yesterday they began yet another test, removing her feeding tube to see if without artificially filling her stomach, her hunger levels would increase and motivate her to eat more.  We’ve not seen success of that test either and she instead has lost more weight. According to the physicians’ caloric calculations, Evie needs to be eating 70 CC’s eight times a day from her bottle to begin gaining weight.   Right now she’s averaging about 35 and hasn’t been able to increase her intake in the past week. 

The crux of the problem seems to be that Everly has to work SO much harder than a normal baby just to eat and breathe therefore tiring very easily, a catch-22 since that extra effort means she’s burning more calories and therefore needs more calories than an average baby. She tries to hard to suck on the special needs Haberman bottle, but cannot create any suction due the lack of any hard palate and the massive cleft in her soft palate.  Everly also tries to swallow all the milk we push into her mouth, but easily becomes overwhelmed and panics as her recessed tongue far back in her throat likely makes her feel like she’s choking. It kills us to watch her struggling to eat, trying to clear fluids from her cleft and often becoming so overwhelmed that her sternum starts shaking and her lips take on a shade of blue.  Seeing how hard this little girl works just to do normal things breaks my heart while at the same time making me already so proud of the fight she has within. 

We're extremely thankful for the sweet friends and family that have gone out of their way to support us with love via phone calls, texts, food, and prayer. Though we've been slow to respond, please know how much we value your encouragement.

 

Praises:
Everly has continued to maintain her airway and the physicians think she’s most likely in the clear now for major respiratory issues since she’s made it this far without obstruction.   We also are grateful for the encouraging meeting we had with a pediatric plastic surgeon, who gave us hope for her long-term outlook once we make it through this first year or two.

Prayer:
We’re feeling overwhelmingly discouraged but know we need to live patient and trusting in this circumstance.   Too, we ask for prayer for wisdom for the neonatologists, nurses, and ourselves for how to best help Everly.   Most importantly though, we are simply praying incessantly for Everly to learn to eat, grow and thrive.

Evie is so tuckered out after trying to eat!