UPDATE 1 (3.4.13) – #prayingforpaisley
UPDATE 2 (3.5.13) – She spent the night with her mom for the first time!
UPDATE 3 (3.5.13) – Kate shares her full story on the radio – INDIEGOGO donations are OPEN.
UPDATE 4 (3.6.13) – Paisley is going into surgery at 1PM PST
UPDATE 5 (3.6.13) – Paisley is out of surgery!
UPDATE 6 (3.8.13) – Paisley Mae is going home!!
This is the story of Paisley Mae, the bravest little baby I’ve ever met.
Paisley was born Jan 22 4:30pm at 7lbs 13oz & 20.25in to the most loving parents Dave and Kate, two of my dearest friends. She was born with a beating heart but lungs that were flooded with fluids that kept her from breathing, so she had to be resuscitated after she was born. Even during their pregnancy, they were continually given negative reports with doctors urging them to terminate the pregnancy due to the number of complications. However, in the time since, she has overcome so many difficult challenges. Her parents have spent hundreds of hours in the hospital, trying to spend as much time as possible with her, taking time off of work and all other duties so they could be present with their tiny miracle every step of the way. Their story is truly a remarkable one that inspires myself and many others to appreciate and value life, even when it comes in the tiniest of packages.
Through Paisley, I’ve seen hundreds of people come together in solidarity to visit them in the hospital, pray for them at home, bless them with hot meals, and do whatever they could to show that they care. Dave and Kate have spent over a month in the hospital so far with Paisley, even celebrating Valentine’s Day and Dave’s birthday in the hospital, but that hasn’t allowed people to forget about them. Far from it, their love for their child has been inspiring so many others to be more present, to be more loving, and to be more thoughtful with them as friends and family.
I was fortunate enough to visit her on Day 26 to take some beautiful photos of her. I’ll try my best to keep this page updated with her story and her impending success!
Paisley’s Progress (Summarized from Kate’s updates on her Instagram):
Day 7 – In NICU. We are so anxious to have her home with us where she belongs. There are a few things that she needs to overcome before this can happen.
Will you please pray with us for:
1. Healing of her heart – the aortic valve is narrowed & causing fluid build up + she has a heart murmur
2. All fluid in her lungs to dissolve so she can breathe on her own & go off all oxygen – this is the biggest struggle for her right now
3. Begin to feed and digest all her food so feeding tube can be removed
4. All ongoing blood tests, exams and tests to come back with good reports – especially a big genetic test we are waiting for results on
5. No infection so she can go off antibiotics
Day 10 – In NICU.
1. My IV has been removed [no more daily pokes in my arms & feet!]
2. My oxygen has been turned down & doctor says tomorrow we will trial no oxygen at all
3. Fluid in my lungs has gone down significantly & my respiratory rates are improving
4. My feeds have been increasing – if I feed on my own every 3 hours for 48 hours I can go off feeding tube [so far I’ve done 2 feeds in a row on my own with no help from tube!]
5. After 8 days, I was taken off antibiotics – no more infection!
Please continue to pray with us for:
1. My heart – healing of aortic valve + murmur
2. All fluid to disappear in my lungs, kidney & neck
3. I will continue to eat on my own for 48 hours with no help from feeding tube [if I do this I can go home!]
4. I will gain weight so I don’t need to go back on IV for supplemental nutrition
5. To go completely off oxygen [if I do this I can go home!]
6. All ongoing blood tests, exams and tests to come back with good reports – especially a big genetic test we are waiting for results on
We are so thankful for the progress our miracle girl has made – especially in the last 2 days. These past 10 days have been such a roller coaster – through it all God has proven so faithful, good & an ‘ever-present help in times of trouble’. So thankful He is with our baby girl – holding her & watching over her – even in the times when we can’t. Thank you for continuing to pray … Our miracle is unfolding day by day.
Day 16 – In NICU.
1. I moved in to an open crib [goodbye incubator!]
2. I am off oxygen
3. Clear results on an X-ray they did on my throat/esophagus today to check for structural abnormality due to my intolerance to feeds
4. Mommy is on an antibiotic so she can come give me cuddles again
Please continue to pray with us that:
1. I will feed all on my own without the help of feeding tube + I would begin to tolerate my feedings [this is my biggest hurdle right now!] – I’m not keeping much down & have a hard time eating due to my labored breathing [doctors are trying many different things to figure out what is going on] – if my feeding doesn’t improve they want to admit me to CHOC [Children’s Hospital of Orange County] to work with feeding specialists & have more evasive tests done to look at structure of my esophagus/throat … of course I don’t want to move there – it’s even further away from mommy & daddy!
2. I would gain weight & strength
3. All congestion in my chest and esophagus to disappear – I am wheezing a lot, especially when I try to eat
4. My heart – healing of narrowed aortic valve + murmur
5. All fluid to continue to disappear in my lungs, kidney & neck
6. All ongoing blood tests, exams and tests to come back with good reports – especially a big genetic test we are still waiting on for results Doctors continue to call Paisley a ‘puzzle’, but we just keep calling her ‘beautifully & wonderfully made’! God is faithful & we trust His perfect timing in bringing her home to be with us. She is just the sweetest, prettiest, cuddliest, bravest little girl – so thankful she is ours!
Day 21 – In NICU. … Gee, I’m tired of being in here. I just want to go HOME with mommy & daddy where I belong! Thank you to everyone for praying for me – I know it makes a difference!
1.Feed all on my own without the help of feeding tube + I would begin to tolerate my feedings [this continues to be my biggest hurdle right now!]
2.No side effects from medicines I am now on
3.I would gain weight & strength
4.All congestion in my chest and esophagus to disappear – I am wheezing a lot, especially when I try to eat
5.My heart – healing of narrowed aortic valve + murmur
6.All fluid to continue to disappear in my lungs, kidney & neck
7.All ongoing blood tests, exams and tests to come back with good reports – especially a big genetic test we are still waiting for results on Doctors are telling us this week is crucial as she is heading in to her 43rd week gestational age & shouldn’t be in NICU at this stage. They are giving her a few more days to try to get feeds down & gain weight, but if she doesn’t they want to send her to CHOC [Children’s Hospital of Orange County] & are talking potential surgery. Doctors continue to say they have no answers, and just keep giving educated guesses, run tests, and leave us with no answers [thankful God knows exactly what she needs – we are resting in that!]
Please pray she does a TURN AROUND so that she can go home instead – we don’t want her to move to a new hospital & of course don’t want her to have surgery! 3 weeks in, we are beyond tired, frustrated & ready to just have her home [just being honest!]. BUT we are continuing to trust God & His perfect timing in bringing our baby girl home. He has been so GOOD to us & we are so thankful for the GOOD things He has done. We wait expectantly for Him to continue proving His goodness & faithfulness in our circumstance! Thank you for praying … ‘God has the final word – Yes, He does!’
Day 26 – In NICU. Every day I am one day closer to going home!
1. I have gained 4 ounces [I gained 2.5 ounces last night alone! Up until a 3 days ago I was continually losing weight, so this is AMAZING!!!]
2. I have become more vigorous in my feedings & have even finished multiple feedings all on my own without the help of feeding tube
3. I have begun to tolerate my feeds & have gone from vomiting up nearly every feed to just occasional spit ups [YAY!!!]
4. My weekly chest X-ray came back very clear on Thursday – lungs & heart are looking very clear of fluid!
Please continue to pray that I will:
1. Feed all on my own without the help of feeding tube for EVERY feed [I have to do this before going home]
2. No side effects from medications I am on
3. I would continue to gain weight daily
4. My heart – healing of narrowed aortic valve + murmur
5. All ongoing blood tests, exams and tests to come back with good reports – especially a big genetic test we are still waiting for results on [we found out this week that there was a mistake made by a nurse & the original blood drawn for this test over 3 weeks ago was never sent so we had to redraw & should hear back in 1-2 weeks]
Day 30 – After 30 days in Hoag Hospital NICU, Paisley was transferred to CHOC [Children’s Hospital of Orange County] NICU Wednesday night. This is not the road we were wanting to have to take, but believing & trusting it will be a short stop on her journey home. We believe this is the best decision for Paisley in her treatment as she will have much more focused care from several specialized teams of doctors that will work together to come up with answers & a gameplan. Please continue to keep our precious baby girl in your prayers. She needs a MIRACLE!
Please pray for these specific immediate needs:
1. To begin to eat on her own again. Occupational therapist is concerned about what happens when she eats & calling it ‘unsafe’ for her to bottle [labored breathing, choking, wet congestion, vomiting, loss of oxygen – occasional turning blue around mouth] so is using feeding tube + will begin new stimulation treatment that will help build her muscles in throat [please pray this new therapy really makes a big difference quickly!]
2. Gain weight & strength [it’s been a continual up & down roller coaster of gaining/losing]
3. Healing of aortic valve + heart murmur [another round of ultra sound, chest X-ray & EKG being run today to see if this is affecting all of her eating/respiratory issues]
4. Clear results & answers on all ongoing tests – doctors continue to call her a puzzle
5. Peace, rest, strength for Paisley [she can definitely tell she’s in a new, unfamiliar place – but she’s such a good little trooper! She rarely cries & has such a sweet disposition] + peace, rest, strength for us …
We will never, ever get used to seeing our sweet girl sick or having to leave her every night. Thank you for praying & standing with us. God is so faithful & His timing is perfect [even though it can look so different to our timing!]. Remembering today He is never early & He is never late. So we wait, wait, wait for Him to finish the GOOD work He’s started in sweet Paisley Mae’s healing & miracle.❤
Day 31 – 2.22.13 Paisley Mae is ONE MONTH old today! [and she gained close to 2oz last night so is up to her birth weight today! Yay!].
Day 39 – In NICU. Every day I am one day closer to going home with mommy & daddy where I belong!
1. The feeding therapist has allowed me to start doing feeds by bottle again [6 out of my 8 feedings per day] – so far I haven’t been able to finish one, but I’ve gotten close a couple times! And more importantly than the quantity of feeds is my improved quality of feeds – I’m sounding better, pacing myself more & vomiting less
2. I have responded well to a new medication that helps my tummy feel better
3. I have been taken off my diuretic [was on this medication to help flush fluid out of my lungs]
4. I have been taken off potassium chloride [taken due to diuretic’s effect on my salt/mineral levels] – this makes me so happy because this stuff really upset my little tummy
5. I have gained weight 8 days in a row! Yay! 6. After a few days of not being too sure, I have adjusted really well to my new hospital, new bed [it even has a mobile!] & new doctors/nurses
Please continue to pray with us that:
1. I will work up to feeding by bottle for all feeds [8x a day] + would finish my feeds + keep them down
2. All my reflux & vomiting would go away
3. My hydronephrosis [only seen in my right kidney] to go away – doctors are considering putting a catheter in to monitor & see how severely it’s effecting my kidney – don’t want to have to do that!!
4. Healing of my thickened aortic valve + heart murmur
5. Fluid in my lungs would go away completely [its much less than it was, but doctors still seeing wetness]
6. I would continue to gain weight & strength every day
7. I would grow & develop right on track in every area
As of this writing, Paisley is spending her 42nd night in the hospital. We are believing for big miracles! We hope that this story strengthens and encourages you if you’re going through a similar situation. Stay encouraged, remain hopeful, and keep praying.
Many of us are joining in prayer for Paisley, and as a daily reminder, we are writing Paisley’s name on our palms in reference to Isaiah 49:16 where it says “I have written your name on the palms of my hands.” Join us by writing Paisley on your palm and tagging #prayingforpaisley. Let’s get this baby home!
UPDATE 2 (Day 43, 3.5.13):
For the first time since her birth, Paisley spent her first night off of her feeding tube and slept through the night with her mom!
4am never looked so good! … Thankful the medical staff have allowed Paisley to stay in a private room for tonight so I can spend the night with her [for the first time!] + they are allowing her to trial 24 hours without the feeding tube! This trial has been off to a rocky start, but believing for GOOD to come of it & to continue on to a lifetime of no tubes! #prayingforpaisley
Thank you for all your prayers and support. I know it means the world to Dave and Kate and we already see it working! Look forward to more good reports. :)
UPDATE 3 (3.5.13):
Kate shares her heartfelt story on GreatRealLive radio. Tune in to see what she had to say about her journey so far and find out how you can contribute to really helping them.
They’ve also set up an IndieGoGo account so you can contribute financially towards the well-being of their family.
UPDATE 4 (3.6.13):
Dave updates us with some news:
Today’s marks day 44 that we’ve been in the NICU. I just wanted to give you all an update on the Miracle girl and what with Gods strength & mighty right hand has overcome and what her last challenge will be.
-The doctors from the beginning said Paisley would have a 70% chance she’d have Down syndrome or Turner syndrome. Well we over came that.
-If not that, they said shed have major heart problems. God has overcome that as well.
-She was born not breathing and needed help breathing at the beginning but God has cleared her lungs and she breathes fine now with no help.
-The doctors did a microarray DNA test and it came back negative to where they didn’t find anything that causes disease. God left his facts behind when they were certain she had a syndrome because they didn’t know what was going on.
-After all tests were done they couldn’t find anything major and they see a healthy beautiful baby girl.
What is left now is for her to feed.
-We have spent weeks feeding and Paisley just doesn’t seem to want to take all her bottles and needs a bit more help getting all her nutrition. She needs time to grow and develop strong eating muscles and coordination. Instead of continuing growing and practicing in a hospital we are going to surgically input a G-Tube and take her home where she belongs. She then can grow and thrive at home, get strong and eat more then enough to where we can remove the G-Tube down the road. This option is going to help us as a tool so she can get all her nutrition no matter what while we work on oral feedings.
I know this is long… When all is said and done God has over come so many doctors reports, facts and labels of what they thought would for sure happen and what she would be & he deserve all Glory. If this little surgery has to be done to get her home and strong then so be it. God will give her strength and grow her into the a strong girl to where the removal of the G-Tube will be another miracle! Thank you everyone that has stood with us especially our Family & Newport Church Family! We love you all! Miracle girl will be home soon and we’re happy to finally see that day arrive!
UPDATE 5 (3.6.13):
She is out of surgery & all went great! She is currently sleeping off the anesthesia & will be doing so most of the day/night. She is such a brave little trooper & looks so peaceful. Please continue to pray for a comfortable recovery, adjustment to tube, and tolerance of feeds [which will begin tomorrow]. THANK YOU for all your love & support! We feel such a peace about this new chapter in Paisley’s journey toward home …