NICU Journey


Alli's Story
"Life Changes In An Instant"


Our third daughter, Allison Grace, came in this world merely weightless, 14.8 ounces (420 grams) to be exact.  January 19, 2011, will be forever a day etched in my soul.  Not because of the amazing wonder and miracle of birth, but because of God's amazing ability to break us, heal us, and carry us through while we watched a living, breathing miracle performed in front of our eyes.   

Alli endured 7 long and horrific months in the NICU with many close calls and even more great saves.  She is doing amazingly well today at almost 2.  Alli is still on oxygen at night, is 99% g-tube fed, is globally delayed, and has severe sensory issues, but through it all God is still so good.   She's an absolute joy and the happiest baby on the block. 

Alli's birth, challenges, and life have already made an enormous impact on our entire family, our friends, and others across the world....it's our prayer it will do the same to you. 

"The seed for a great miracle lies not in difficulty, but in impossibility"   from Faith Like Potatoes

On August 5, 2011, after 199 grueling days in the NICU (Neonatal Intensive Care Unit), Alli was home. We experienced many close calls and great saves with Alli. She is a true miracle, an answer to many prayers, and completes our family, entirely.

While in the NICU, Alli was diagnosed with the following:
Small for gestational age (SGA), Severe Intrauterine Growth Restriction (SIUGR), Bronchopulmonary Dysplasia (BPD), Chronic Lung Disease (CLD), Pulmonary Hypoplasia, Pulmonary Hypertension, Severe Gastroesophageal Reflux disease (GERD), Apnea of Prematurity, Bradycardia, Cholestasis, Anemia of Prematurity, Osteopenia of Prematurity, Retinopathy of Prematurity (ROP), Hypertension, Bilateral Inguinal Hernias, and Ovarian Cysts.

Tests and Procedures while in the NICU:
At the time of her discharge, it was said Alli held the record for most blood and plasma transfusions. She also endured MANY x-rays, PICC lines, umbilical lines, arterial lines, swallow studies, a bronchoscopy, disida scan, countless echo-cardiograms, gastric emptying scan, Upper GI, PH probe, blood tests, blood tests, and yes, more blood tests. She has scars on her head, hands, feet, and heels from the many IV’s and heel sticks.

Surgeries include:
Gastrostomy tube, also called a G-tube, fundoplication, and bilateral inguinal hernia repair, tonsillectomy, adenoidectomy, and participates in a Stem Cell Clinical Trial for Cerebral Palsy.

Alli Grace today (January 2017):
January 2017 we celebrate 6 years with our littlest A!!  She is still g-tube dependent, but is eating a ton of calories by mouth daily.  We're working hard on self-feeding.  She's not a fan, but is capable so I know we'll get there.  Developmentally, she is still doing amazing considering where she started. She is severely delayed cognitively and in speech, but really.  I mean she weighed 14 ounces.  She loves to clap, LOVES music, laughing is a sport to her, and Sofia the First hung the moon.  She started walking right before turning 3 and now skips, runs, hops, and all that jazz.  She loves dance class and anything dealing with music.  She signs some, and although she has 0 words, she still says so much.  
 She receives music therapy, occupational therapy, physical therapy, speech therapy, feeding therapy and is in the Early Childhood Special Education preschool.  She is followed by her pediatrician, neurologist, cardiologist, pulmonologist, geneticist, physiatrist, opthamologist, gastroenterologist, an ENT, and a nutritionist. Her major developmental hurdles now include cerebral palsy, speech apraxia, global developmental delays, and autism.  

Below you can read updates I would give friends and family on Facebook regarding Alli's condition during her 199 days in the NICU.  I had started this blog the day after she was born, but her condition was simply too critical to maintain much sanity to write about everything.  I’m thankful to at least have this much documented.  I am keeping it here in hopes that it helps other parents of premature babies to know where we've been.  And to serve as a reminder of God's providence in our lives.

Sidenote:  I was probably slightly delusional and made it sound like I had it together on most days AND that the NICU was all wine and roses.  A baby born less than a single pound, on life support, and in the neonatal intensive care unit most certainly was not all wine and roses.


2011
January 

January 19:  

Post 1: The game changer (although I'm confident this is not a fun game) just came. We will be either delivering Alli in a few short hours or first thing in the morning. The absent end diastolic flow reversed today. She was just weighed and is still estimated to weigh 13 ozs. Please pray for our sweet baby and the dr's who will be working with her...in Jesus name!!!! 

Post 2:  Going back at 3:30 to deliver our precious Allison Grace. Please pray for healthy life for her and for the doctors and nurses as they care for our baby girl!

Post 3:   Allison Grace Belin was born at 4:03 pm weighing just over 14 ozs (we were originally told 15 ounces, which rounded 14.8 is 15 oz, but her birth records say 14.8 so we'll stick with that)!!! She cried, kicked, and waved her arms. She was easily intubated and is being cared for by the nurses and doctors. We get to see her around 8. To God be the Glory for this precious life!!

January 20: 
  
POST 1: Just spent the morning with our sweet Allison! They were going to try and wean her off the vent this afternoon (her O2 is at 24%!!), but her blood gases came back not terrible, but not where they would like them to be either. So, it's still early, but Dr's are very optimistic!! God is SO good! Thank you all for your thoughts and prayers...keep them coming!!

Post 2:  Alli's first brain scan appears normal!! Please continue to pray specifically for no brain bleeds, her blood gas levels to stabalize, glucose, white blood count, and platlette count to stablize. She's still very much a fighter and God is SO good! I basically over did it today and am asking for some R and R tomorrow. We have loved and appreciated all the visitiors, but need a day to rest, heal, and catch up!

January 21:  

Post 1:  Ok praying people! Alli had a rough night and needs our prayers. Please PRAY for those sweet lungs. They had to move her to the high frequency vent around 3 am. Since then all blood gas levels have been the best since she was born. Although this is not the greatest option for her lungs it's what she needs and she is now doing better. Please pray for strength and no infections in those sweet lungs!

Post 2:  Just sat all evening with our sweet Alli! She's had a stable day and mostly a stable night. They've been able to lower her oxygen some tonight, but her BP has been low. She finally was able to have her renal scan this evening, but no results yet. Please pray for a good report there and a stable night of rest for our sweet girl!!

January 22:   

Post 1:  There was one happy Mama and Daddy when we walked in Alli's room this morning to find they had put on a pink HAIRBOW!! She has and continues to be stable...Thank you Jesus! Just had her ECHO done and are still awaiting that and her renal scan. Please pray for good reports there. Chest and abdominal x-ray looked great this morning and she will continue to get those every 12 hrs while on the vent.

Post 2:  76 hours old...thank you Jesus!! Alli has continued to be stable today and all vitals, stats, and blood gases have been good. Her preliminary ECHO results appear to show the PDA (a blood vessel) appears to be normal and closed....another thank you Jesus! Tomorrow will be bittersweet...I will be discharged and we can't wait to see our big baby girls, but part of us will still be here. 

January 23:  Sorry everyone...I am not ignoring, my phone is gone, seriously! Angela Bryant, I'm blaming you! It worked fine until you touched it Wednesday!! =) We are home.  Leaving her was the most difficult thing I've done in my life.  I truly know what it means to have your heart in two places.  Alli is still very stable and they have been able to greatly wean her oxygen today! We'll be back first thing in the morning to spend some time with our sweet girl. Please PRAY for those lungs....they are just so immature and at this point that's our biggest fight. We love you all and are humbled by all the prayers, visits, calls, texts, messages, food, I could go on and on!  We bombarded heaven this week and I pray that you continue to join us walk out this season in our lives.

January 24: Alli has had another "stable/good" day! Her blood gases have stayed "perfect" all day and they have continued to lower her oxygen and nitric acid. Although her initial brain scan showed no brain bleeds they just performed another scan at 6. If this scan is clear chances are she is out of the woods for brain bleeds and wouldn't get another scan for close to a month!! Please PRAY for no bleeds...in Jesus name!!! Also, they scanned her liver, pancreas, and gall bladder this evening. Her glucose levels continue to bottom out then quickly rise to 200+. Please PRAY for this just to be a reaction to some of the supplemental nutrition they have to give her and that these organs are functioning properly. Again, we are humbled by you all!! God’s grace and mercy through this have been so amazing! Please continue to pray for those sweet lungs of hers to mature, function properly, and be infection free! Please pray for ALL those sweet babies and their parents in the NICU. We have already met several families that I know God has bonded us together for life and families that have made contact with us that are previous NICU parents. There are no mistakes or accidents…just a divine plane. Much love!!

January 25:  Today Alli's scans from yesterday came back! Liver, pancreas, stomach, and gall bladder appear normal. Although she passed her brain scan on day 3, yesterdays showed a "concerning" spot. There does not appear to be any bleeding, but it still could be a bleed, a clot, or nothing at all. We're praying for NOTHING at all!! She is beginning to show signs of her prematurity and the fact that she was so growth restricted. Her hardest hit being her liver and bone marrow. She has had platelet transfusions daily until Sunday and then received another today. She has also had to have a blood transfusion daily until yesterday, but none today! These are all signs of her prematurity but still a concern. Her direct bilirubin levels are still high and the "bili lights" do not help bring these levels down. She has been on a medicine for it, but we believe and her dr’s are hoping this is just another sign of her prematurity. The liver scan looked normal, but she could still have some issues there with processing. BUT, the great news we heard today was that they were going to start her on "mama's milk” tonight!! Although it equals about a drop per hour this is still HUGE and something we were not expecting for the next few weeks!! We pray that her little body can tolerate it and they don't have to pull her feeds and can only increase them!! Please continue to pray for her lungs, for no brain bleeds, her liver, her feedings, and her growth!! We are so thankful for all Alli’s prayer warriors! Please remember and pray for ALL those precious NICU babies and their parents! We love you all!!

Oh and tomorrow she's 1 week old!!!!!  Thank you Lord!!!!!  <3

January 26:   

Post 1:  (4 A.M.) Pray, pray, pray...bad night for Alli. Dr's called us in...Pray life!!

Post 2:  Posted by Aunt Becky on our behalf:  For all of you who are thinking of, and in constant prayer, for John, Jackie and the girls, They've asked me to let you all know how much they appreciate you all in every way. Alli has done much better today than she did last night. Her ...heart scan looked good...we just need to continue to pray for the development of those sweet lungs. They have decided to stay with her tonight and don't have access to update you all, but wanted you to know that while she is fighting, she's not 'out of the woods'. Thank you all for loving my brother, sister-in-law and family the way you do...We all love you.

January 27:  John and I got home around 6:30 for some big baby girl loving!! This has been so difficult on Anna Claire and Ava despite the fact they’ve had the comfort of grandparents. Our sweet Alli had an uneventful night and day and we are SO thankful!! There are no words for yesterday. People have told us the NICU is a roller coaster and it truly is, although I have stored “roller coaster” and the word "viable" in the loathe categories in my brain. Lungs continue to be her biggest issue, but there is some lung function and they were beginning to wean her when we left. I told them not to get too excited and happy about weaning since that caused the crash we had yesterday morning. Although I’m not the doctor I never felt right about them weaning her Tuesday and as we experienced, it just wasn’t time. HOPEFULLY, they’ll take it a little slower this time! THANK YOU all for you many thoughts and prayers!! Please bear with me if I don't answer an email, text, or call! I will eventually get there and hope to have a new phone tomorrow…Just waiting on Apple to send me a new one! Again, love you all! Prayers and blessings over each of your homes, lives, and families!! <3

January 28:  Changed lil' bits diaper for the first time today! Can't believe how excited and scared I was to do something that I've done constantly for the past four years! She's holding steady just like I told her...Praying she continues to do so!! Praying for all those sweet NICU babies and their parents. Hearing so many miraculous stories and stories that need miracles!!

January 29:   

Post 1:  Bad night for our lil' bit. Blood pressure and heart rate have dropped and her oxygen saturation levels are all over the place. I swear, just when they get her somewhat stable they change something and she crashes. Please pray for her levels to stablize and for wisdom and discernment for dr's and nurses.

Post 2:  Alli's first dose of steroids in....pray, pray, pray this works!!!

January 30: Day 11 brought us into the 1 lb club...1 lb 4 oz to be exact...they weighed her 3 times just to be sure! Today was steady...I will no longer use the word "good" because it always seems followed by her crashing, but we'll certainly take steady. On our way home to love on the big girls!! 

January 31:   Steady Monday...I went for my Dr's appt. today and by the time we got back they had moved Alli from the oscillator to the conventional vent...not that she was actually ready, but between the steroids and the oscillator overextending her lungs her doctor wanted to run with it and see what happens (insert VERY nervous Mama!!) So far, so steady and all stats have remained the same!! Praying for peaceful sleep for our sweet angel and another uneventful night of growth, healing, and advances!! <3

February 

February 2:   

Post 1:  So far all the changes that "nerved" me out on Monday have been steady changes and we've had a good few days!! They started her back on mama's milk last night and so far she's tolerated it well!! Pray she continues to hold it steady and march forward!! TWO WEEKS old today...thank you my sweet Jesus!!! 

Post 2:  Today will be a day I remember FOREVER!! Today, our precious miracle Alli Grace turned 2 weeks old AND today I held that sweet miracle for the first time!! It wasn't the normal "first time" I had planned, especially coming two weeks after the fact, but it certainly tied for the greatest moment of my life!! I can also finally one up my crazy husband...I got to hold her FIRST!! He got to hold Anna Claire and Ava first, but I'm sure although secretly jealous, he's thrilled I got the first chance!!


February 3:  John and I got to hold, hold our Alli today!!! As in out of her oven, swaddled in her blanket, cradled in our arms!!! So good!!!




February 6:  30 weeks gestation...18 days old....1lb 4.8 oz!!!

February 7: Alli needs some special prayers for those lungs today!! Her ventilator malfunctioned (as if we needed more to worry about) and she has had issues ever since. She's been breathing around 39% oxygen for a few days, but has been bumped up to 100% and all her levels are still low at that 100%. We covet all prayers!!! 

February 8:    

Post 1:  Alli's latest diagnosis...Chronic lung disease. Please pray for healing!! Tough day, long night.

Post 2:  Alli has an infection this morning...praying for healing!!

Post 3:  They are thinking it's ecoli in the lungs from her tube...common infection in NICU, but she already has a very compromised little system and had quickly become a very sick little girl. Praying for supernatural fast healing!!

February 9:   So far today Alli is steady despite a nasty, nasty infection. She is back up to requiring 100% oxygen. She was only needing 30-40% yesterday, but when they flipped her at midnight her need went up. She needs a spinal tap to rule out sepsis and meningitis, but is too little. Praying, praying this is the ONLY infection in her precious body and that she is healing fast!!! 

February 10:  22 days old....1 lb 6.6 oz....holding steady!! Antibiotics "appear" to be working!! Today her oxygen needs have been around 30-40%, which is incredible considering how sick she is!! Thank you again for all your thoughts and prayers...God is SO good!! 

February 13:   Nothing major to report...Alli is holding steady!! Loving on our big baby girls on this gorgeous Sunday then off to love on our lil' bit!! His love never fails 
Happy Sunday!!

February 14:  Has hands down the greatest in-laws in the world....they are leaving today after "babysitting" us for over a month!! The torch has now been passed to that crazy sister-in-law of mine!! Love them all!!

February 15:   Today's bump in the road: Severe pulmonary hypertension. Dr's have given her a 50/50 chance, but she has already beaten much worse odds!! Please, please pray for dilation of the pulmonary artery and healthy growth for those sweet lungs!!

February 16:   4 weeks ago today a 14 ounce baby girl forever changed our lives! Today she is 1 lb 8 oz and holding steady! There have been many bumps and I'm sure we'll have more, but we thank God everyday for the blessing and miracle of our baby Alli Grace!!

February 20:  Wishes I could be in two places at the same time!! Miss spending all that time with my big baby girls, but also can't imagine not my seeing lil' bit! 1 lb 10 oz, 32 days old, and 32 weeks gestation today!!  And if a former NICU mama wants to chime in and share how you balance it all, please do so!!

February 21:   Great news from one of Alli's favorite Dr's....her severe pulmonary hypertension has now been downgraded to mild to moderate! Dr. L also felt like we were getting pretty close to taking her OFF the ventilator!!! We ask for continued prayers for those sweet lungs so they are ready when she is ready and the time is right!! We are continually amazed at God's grace and mercy!! Slow and steady wins the race!!

February 23:   Can I get an Amen!?? Alli is 5 weeks today and has officially doubled her weight!!! 820 grams/1 lb 14 oz!!!! That's almost to the 2 lb club folks!!! 

February 28:   

Post 1:  Waiting on blood tests to came back....praying Alli doesn't have another infection!

Post 2:  Good news first: Alli's Pulmonary Hypertension is GONE!!! Her Friday echo showed her heart to be completely normal! She will stay on her medication and will be weaned off in the future. The infection is back in her lungs, well what they are assuming is the same infection…We are still waiting on the cultures, but we do know it's a gram negative (the bad kind). We've been told that as long as she is on the vent this infection will continue to show its ugly face. So, PRAY with us that there is no next time, that she recovers from this infection quickly with no setbacks, and is OFF that vent ASAP!! We can't wait to see that sweet little face without all the tubes and hold her so close (for longer than 2 minutes)!! 

March

March 1:  Alli tipped the scales this morning!! 2 lb club!!!! So big!! 

March 2:  They raised Alli's "Porsche 911 Convertible" today to let us get some up close and personal loving!! Praying and anxiously awaiting the day she's off that vent and we can hold her tight!! 

March 5:   

Post 1:  This mama is sure to be one hot mess later...get to do my first Kangaroo Care (that's the skin to skin contact) with our sweet Alli!! So excited!! 

Post 2:  Kangaroo Care was FABULOUS!! Held our sweet baby girl for a little over an hour!!  Finally being able to truly hold that baby is one of the greatest gifts.

March 6:  Sunday nights plans are to EXTUBATE our sweet Alli Grace!! PRAY, PRAY, PRAY that she accepts the change and can stay OFF the ventilator!! We are waiting to see how her last blood gas levels come back and if they remain good they're doing it!!

March 7:  It was a no go last night! Alli's CO2 came back too high and they need to work on weaning her vent settings some more. The vent is a necessary evil...it's giving her breaths, but we're going on 7 weeks and it's also damaging her already sensitive and immature lungs. So, let's PRAY her off that thing so her lungs can grow stronger and heal!!

March 8:  They tried taking Alli off the ventilator last night, but she freaked out, raised her heart rate to well over 200, and was just fighting it too much. Hopefully, the second times the charm! In better news...she weighs 2 lbs 6 oz and is 13.5 inches long!! Big Chunky!!

March 9:  Alli kicked the IV off her foot and her central line is out so those hands and feet are finally free!! She's ready to play!! She is receiving no IV fluids and working her way up in the milk department!! They just upped her calories to 26 cal (normal breast milk is 20)...she's about to pack on those pounds!! 7 weeks old today!!

March 11:  Things NOT to say to a mother who has a baby in the NICU: "Oh at least you didn't have to go through that last trimester, get so huge, and be so uncomfortable!" Really...!?? Um, yes because worrying whether or not my baby was going to live, watching her be poked and prodded, on a ventilator, and hooked up to everything is soooo much better than a few weeks of back pain and being, ahem, uncomfortable!!

March 14:  

Post 1:  If at first you don't succeed, try again!! Awaiting them to extubate Alli and let her fly!! Ready to get this show on the road!! 

Post 2:  So far, so good!!! Alli was extubated at 11:30 and has tolerated it well!! The respiratory therapist just came by and her first blood gas levels were "textbook!!!!!"

March 17:   Much better day for our Alli!! Yesterday, she decided to stop breathing on me and had a hard time coming back up...they're thinking they've stressed her sweet self out too much this week. I'm hoping they just let her rest for another day or so before getting all crazy again!! Thankfully, she has not had to go back on the ventilator!!

March 19:   

Post 1:  Happy 2 months to our sweet baby Allison Grace!!! Thanking my God for this precious miracle!! Great day with our big girls, dinner with the husband, and then a birthday bash with some kangaroo care tonight!!!

Post 2:  Lobster mac-n-cheese, good vino, a "normal" date-night with John, now getting to watch my sweet husband cuddle with his littlest baby girl for the first time....sooooo priceless!!

March 20:   

Post 1:  My 2 month birthday party included my super cool shades from my sweet nurse Carrie!! And a brief moment without my big CPAP all over my nose!!

Post 2:  After a week and a half of going back and forth and back and forth again between 2 lbs 8 oz and 2 lbs 9 oz we've finally broken through to 2 lbs 10 oz!!! 3 lb club here we come!!!!

March 26:  Guess who is 2 lbs 15 oz, finally has that big ol' CPAP contraption off, and now is breathing easy with my nasal cannula!?? It's me!! Oh and I LOVE my pacy!! Thank you for praying for me!!


March 27:  I made it to the 3 lb club AND I got to put on my first outfit (polka dots naturally) all in one night!! Whooo I'm pooped!!! 




March 31:  

Post 1:  Look...no tube in my mouth!! I'm FREE!!!!



Post 2:  This time tomorrow night, if all remains well, Anna Claire and Ava will have met their baby sister!! I'm so excited I can't even think straight!! 10 weeks old, 3 lb 5 oz, and due date in 3 weeks!! Hopefully, only 6-8 more weeks and all the Belin babies will be together for good!!

April

April 1:

Post 1: Getting ready to take the big girls to meet their baby sister!! Sooo excited....lots of tissues and pictures to come!!   

Post 2:  I was already losing it at this point!! Taking my baby girl to meet my big baby girls!! Thanks to our incredible nurse, the RT's, and nurse practitioner that helped to make this happen!!  


Post 3:  Whoa!!! What a night!! I seriously can't describe the feeling of being so complete! Finally, Alli is not just a picture, not just someone we talk about and pray for, but she's one of us! Anna Claire was so precious and has talked non-stop since we left. Ava, on the other hand, was not a happy girl!! It never dawned on us that she has never really seen me hold another baby...needless to say, she was a jealous fool!! Special thanks to Carrie and crew for making tonight happen!! 


April 3:

1st postFirst official bath given by Mama!

   

2nd post: Tucked in and snoozin' with a view of my sisters!


3rd post: Easter Bunny pictures with the big bunny sisters brought me!


4th post: Oh happy day!!! Allison is moving out of her isolette into a big girl crib today!! She's now on wall O2, 21% O2 (basically, what we breathe) and her oxygen saturation levels are 100%!!! Now, we've got to keep this stable and then start and tolerate actual feedings and then we're ready to go!! Hopefully, by the end of this week we'll finally be able to introduce the bottle!!

April 6:  Alli is inching her way oh so close to the 4 lb club (thought we'd be there tonight, but maybe tomorrow)! She's 11 weeks today and just took her first bottle tonight, albeit a tiny amount, like a pro!! That suck-swallow-breathe thing can sometimes be the longest part of this process! Sooooo excited for our precious friends, The Bales, who will be taking their miracle home Friday! God is so faithful!!

April 8:  I made it to the 4 lb club!! YAY!! I also started taking a bottle, but apparently it's more work than you would think!! Learning how to suck, swallow, and breathe all at the same time is sure hard on a lil' toot like me!



April 16:  Great day playing with the big girls and went to see Hop! So ready to love on my 4 lb 7 oz blessing and let her big sisters see her for the second time!! Hopefully, Ava will not be as jealous!!

April 17:   

1st post: Pretty bitter sweet day....my due date has approached us! Can't believe 13 weeks have come and gone!! It's been more than amazing to watch a 14.8 oz miracle of God grow into her big chunky 4 lb 7.7 oz self!! I'm sad my last pregnancy ended the way it did and we missed all the "normal," but we're so blessed to have the outcome we have and have witnessed a true miracle!!

2nd post: My precious family of 5 all together again!




 3rd post: BIG GIRL CRIB!!



April 26:  About to leave to love on lil' britches AND today marks the first meeting of The NICU Parent to Parent Support Group that God layed on our hearts! Being a parent, one of the hardest places in the world to find "Hope" is in the NICU, especially those first few days and weeks. If anyone can show others, I think it's us AND if anyone can talk about it, it's my husband!! Our 14.8 oz miracle is almost 5 lbs!!!

April 27:  As I posted earlier, Alli FINALLY made it to the 5 lb club!! It seems like once she gets close to the next pound she titter totters back and forth for a few days and leaves everyone guessing when she'll jump over!! She is, by this Mama's standards, doing A-mazing, BUT still has a ways to go and a long road ahead of meeting milestones and playing catch up, which could take several years all the way around!!

As many of you know her lungs are just flat out, for lack of words and to actually quote one of her DR's, HORRIBLE!!! She will more than likely go home on oxygen and will remain on O2 for who knows how long!! Her lungs just need time to grow, heal, and lay down new lung tissue. It could take years and she'll probably never run track, but hey, she weighed 14.8 freakin' ounces so I'm soooo ok with that!! She also battles pulmonary hypertension which was GONE, but resurfaced after they discontinued her meds.  The DR's felt that she had outgrown the dose therefore no longer requiring the medication at all; however, her O2 requirements began creeping back up so they did a follow up echocardiogram where they discovered the pulmonary hypertension had returned.  Currently, they are trying to find the right dose for her and I'm thinking they have it!!  We shall see!!  =)

She will probably not come home until June. For those who are wondering and those who have asked weight is not the determining factor. There are MANY variables to when these micro-preemies can be discharged. The two main things keeping us here are her O2 requirements and feedings. She has got to get her O2 requirements down and be taking her full feeds by bottle. She's getting there with both, but will probably have her feedings down pat before her O2 is where it needs to be to come home. Currently, at each feeding she's taking about 20 cc by bottle and the remaining 16 cc through her feeding tube. It's just a process, albeit a long and tiring one and I feel like I've been through the first year or two of medical school.

As far as her pitiful lungs she had a lot going against her....lack of amniotic fluid while I was pregnant, just being premature and severely growth restricted, and of course being on the ventilator for 9 weeks. It's weird how something that had kept her alive also caused so much damage....it was an absolute necessary evil. But again, we're getting there and we will get there!!

Another huge issue is her liver, although not an issue that's keeping us here. They have ruled out pretty much everything that could be....disease, obstructions, no bile duct and so on. Basically, her liver has suffered tremendously from being on IV fluid nutrition for so long and then most likely being so deprived of oxygen and nutrients while I was pregnant....another side effect of intrauterine growth restriction. As with her lungs, the liver will grow new tissue so again she just needs more time!! There is a "worst case scenario" where John or myself would need to give her part of our liver, but it's unlikely and only one DR seems to think that could be a potential possibility.

What a road!!! 99 days today and counting!! As always we THANK YOU for joining us as we have prayed and believed every second for this miracle!!! As a nurse stated yesterday, Alli will eventually give her older sisters a run for their money in a few years!! She's had to fight for life for so long now that's all she knows!! For those of you that actually know the big girls you know that's a pretty big statement, but I have a feeling it will come true!! I'm pretty sure it's going to be a good show and fun times in the Belin home!!! We CAN NOT wait to have our whole family under one roof!!  Again, thank you all for the prayers, messages, and words of encouragement!! It's meant so much!! Love you all!!!

May

May 6:  After the approval and recommendation from Alli's medical team we are Low Country bound for an impromptu vacay w/ the fam.... #happy

May 9:  You're with us sweet girl!! Can't wait to see you run down the beach with your sisters!! 


May 11:  The bigger the bow the closer to Jesus...and the better the Mama!! 


May 13:  I love when a Dr says, "I don't know why these levels are better...it has us ALL baffled!!" Amen and Amen....bilirubin levels fell pretty dramatically. Alli is 16 weeks old, 5 lbs 9 oz!!! (in regards to her liver...she had been in liver failure since birth, basically).

May 14: 



1st post:  Alli has taken 7 straight FULL FEEDS by bottle!!!! Literally, she put her big girl panties on yesterday and decided to get this show on the road!! She also ripped out her feeding tube b/c she thinks she longer needs it!! Please pray she can maintain the endurance to bottle feed!! Closer and closer to home!!!

2nd post:  Thank you to all my precious friends that are out of control for throwing an amazing celebration for our sweet girl!! Thanks also to all the sweet ladies and friends that came out to enjoy this day with us!! Love you all!! So blessed to have and know each of you!!! Muah!!!!


May 19:  Happy 4 months to our sweet Alli!! 5 lbs 12.1 oz.....day 123 and counting, but we're getting there and are blessed for each day!! So big!! 

May 22: Sweet Alli made it to the 6 lb club tonight!!! 5 ounces away from meeting what AC weighed at birth!!

May 24:  Friends, John and I humbly seek your prayers and positive thoughts for a major decision we have to make for our sweet Alli!

May 25:  Ok so yes I have a blog, but the sweet girl that is creating it for me has a son who is chronically ill and has been in the hospital for some time. So, I have some things saved that I was going to put on there because I wanted to document this journey for my own personal "self-help" and of course for our sweet Alli to read in the future. Today I'm just going to go ahead and share our latest hurdle so everyone understands and to again seek your continued prayers for Alli's healing, growth, and the decisions I hope we don't have to make!! We thank you for all those prayers and positive thoughts sent our way....we can feel them!!

Yesterday, John and I had a care conference with Alli's nurses, our case manager, the nutritionist, speech therapist, her cardiologist, neonatologist, and her GI Dr’s.  I was asking all week, "Am I going to get blindsided....am I going to get blindsided!!?" I just have had that pit in my stomach and lump in my throat that I knew something was up.  For starters, I consider myself a pretty smart cookie and I am a huge researcher...always have been....so it goes without saying that I KNEW we were going to discuss going home on a feeding tube, either the NG which simply goes through her nose or the g-tube that is surgically put in and later removed when she is eating well (which could be months or years-who knows). I KNEW all of these things, but in my opinion and what I thought was all her Dr's opinions, until yesterday, a g-tube would not, could not, be an option at this time because A) no one knows if she would make it through the surgery and B) no one knows if we could get her back off the ventilator, thus making her vent dependent and possibly having to have a tracheostomy. EVERYTHING, hands down EVERYTHING that has been done to and for Alli during her treatment has had a repercussion of some kind. I know and understand that these are all "worse case scenarios,” but Alli IS a worst case scenario. From an "outsiders" perspective the idea to do this would seem a "no-brainer." It's not major surgery, they do them all the time, it will give us a way to safely feed her and get her home so she can grow, lay down new and healthy lung tissue, work on bottle feedings, and work on meeting her milestones at home. We want that trust me....I'm not enjoying being in that hospital every day! I want my family home and together so trust me I’ll do what we have to do.  I just don’t think this is it! 

At the end of the day she doesn’t have the lungs for the surgery. It could be the best thing that has happened for her thus far, but it could also mean life and death. And then if we're not able to get her the proper nutrition she can't grow and get well.  This means she could always do something crazy and go backwards with her lungs and pulmonary hypertension.  It's a two edged sword and both sides miserably hurt. I'm not going to sit here and preach to anyone. People can say what they will about modern medicine saving Alli....I mean yes, I'll admit that COULD be a valid argument although I choose to believe that God has used modern medicine, the doctors, and nurses to keep our precious girl here. But, those same people cannot sit in front of me and say she is here today due solely to modern medicine because very simply her lungs were so hypoplastic, so small, so damaged before birth...whatever you want to say...they should not have been compatible with life. Her lungs are HANDS DOWN divine intervention and I've heard it over and over again from nurses and doctors in that NICU.  So, it is a major decision and one that I again seek your prayers for.   Please, please pray for healing for those sweet lungs, growth, and endurance for her to at least continue to bottle feed and pray for us all to make the right moves and decisions, doctors and nurses included, in her care.

May 31:  Alli has hit a rough patch....she's gone from .5 liters (technically what she could go home on) to 4 liters and requiring 100% O2.....all in about 12 hrs time!! No sign of infection, but something is not right. Please pray with us for those lungs and that it's not her pulmonary hypertension making a strong and evil comeback!!




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