Here were the updates on Sweet Little Alynna

Thursday, July 16, 2009 5:29 AM, CDT

Good morning everyone. I just came from Alynna's room where she is ....... resting comfortably?... Her nurses report she had a good night! Her body temp is a little low, but I thought it was cold in that room! She's under a warmer, of course, but she's so long her feet aren't getting any of that heat. Brrrr. They have her pretty well sedated now. From what I can gather, they wanted to see ' her fight' and they saw that yesterday when she was pulling at things and moving her arms and legs. Everything was good, but they want her to rest, so more meds and to sleepytown she went. From what we've seen, everything looks encouraging. This was a major, major setback for her, tho and it is going to be a long road back... well, unless of course a miracle occurs and she's instantly better! That would work for me!

Jacelyn and Matt went to the R. McD House to sleep last night -- hope they got some rest. Other gparents went to the Ramada. Mike and I camped out here at the hospital -- we just like to be near her and concrete really isn't THAT hard, for goodness sake. lol. Too bad we aren't still on the 4th floor, Heart Center - they have awesome accomodations for overnight family. We hope to get a nap at the R McD at some point today when other family members can watch over the l'il one.

Thank you all for your gifts, emails, phone calls and messages of encouragement. But most of all thank you for the prayers. YOUR prayers will be what pulls Miss Alynna through this. Yesterday was an ugly day, but we made it through it and are hopeful for a much better day today. I will let you know if any changes occur throughout the day.

We love you all!

Mike and Darla, Jacelyn and Matt, Miss Alynna "Lynnie-Boo"

God is in control!
~Monday, July 20, 2009 11:19 AM, CDT

PRAISE REPORT...Several are asking how to pronounce Alynna - its "Uh lin Uh"... an "uh" on each end. lol. K. Now for the good news. They are finished with the surgery and the doc feels it went well. Her heart is pumping again on its own. They are leaving the sternum open for now in case they have to go back in and tweak things. Right now they are doing an echo to see if things are rolling the way they need to be (my term, sorry - I'm no med student - prob should have said flowing, huh). Soon she will be moved to recovery and that may take a couple of hours - then we get to see her. She'll be on the vent for probably a week, then another week of recovery and stabilization before she gets to come home. If anyone's counting, that makes a full month at the hospital.

-Darla
~Tuesday, July 21, 2009 4:55 AM, CDT

Good morning everyone. The doctor was just in to see us. He said she had a good night and all her numbers are good. He put in the order to begin the process of weaning her off the ECMO machine, life support. It will be a slow process - 10 cc per hour - to see how she handles it. Said it should take all weekend and then take her totally off on Monday.

He said she is a critically ill patient, but for someone in her condition she is doing really well. (Prayers, doc - GOD is doing this) He agreed with me that she is strong and said that babies are resilient.

I would like you all to begin speaking as if she were already healed. If someone asks you about her, please say she is being healed at this moment. Speak it out loud if you have no one else to speak to. We have to have faith.

We're doing great. We keep getting encouraging words and acts of deeds constantly...... CONSTANTLY -- not when "we're low" b/c we haven't gotten low - you have not allowed us to go there - you area constantly lifting us up so we are doing fine. We love little Alynna and KNOW God has great plans for her. It's so exciting to be a part of this and see what He has in store.

She is so beautiful and everyone comments about how absolutely adorable she is - so it just isn't grams that think this.

Love to you all.

Mike and Darla, Jacelyn and Matthew, Alynna Faith
~Tuesday, July 21, 2009 8:33 AM, CDT

Good morning everyone. Alynna held her own over the night. Sweet Baby. Mike stayed in there with her until 1 a.m. and then came in here and slept in a straight chair until 5 when he went back in. He has been the one to stay right by her side, praying without ceasing. At first (last week) the nurses thought he was falling asleep and feared he would topple into her bed and "equipment", but they have now learned he is just in prayer and eventually he will say amen and open his eyes. lol.

Matt, Jace and I, along with 5 other snorers slept in the lounge last night. Jace was next to me and kept rubbing my arm softly if my snoring got out of control. There is a man across the room who is snoring so loudly now I think the rest of us are contemplating dumping him out of his recliner. OVERTHROW THE SNORER. haha. JUSt KidDing.

The nurse told Jace at 5 when she checked on her that she had slept really well from 10 - 4 and that would be a good schedule for her once she got home. Jace was hoping for maybe 10-8...LOL. Jacelyn did have a meltdown yesterday -- all the stress finally got to her. I told her it was ok to cry - that it didn't mean she lacked faith or that she didn't believe God would heal her little Alynna, but that it meant she was human. And physically and emotionally worn out. So she did let it all out, I gave her a back rub, Matt bought her chicken Mcnuggets ( by the way a 24 hour McDonalds just steps away is a dangerous thing), she got an encouraging report from the doctor via Mike, then she was much better.

So today's plan is probably much like yesterday's. They said it would just take time for them to get all the levels consistently where they need them. The problem yesterday was (and maybe still is) her bp was so low they couldn't give her the amount of sedation she needed. Alynna threw some fits when they suctioned her and also the nurse said she throws a fit when Matt and Jace come down the hall. Fits are not good when you've had your second open heart surgery in 11 days with a code thrown in as well. Chest is still open except for the skin- he did stitch that back. She's still on a vent. I don't know how long we'll be here. She is 3 weeks old today.

Pray we have a good nurse. You would not believe - or maybe you would - what a difference it makes in our life and in Alynna's when we have a 'good nurse'. One of the best ones we've had was on duty last night, but it was her last night here b/c she's going to a pediatric clinic. Lucky them. Her name is Angie. God Bless Angie! Mike said she didn't sit down the whole time he was in there --- always up checking the machines and adding this or that --- and scolding the lab for not getting Lynn's calcium up to her in a timely manner.... Oh, life in the hospital.

It was not a good day on this floor. Two babies died yesterday and 4 others that I know of didn't have a good day. Everyone, it seemed was out in the hallway crying, or on their cell phones crying. But before night time, most had encouraging news as their l'il loved ones had made some progress. When one is discouraged we gather together here in our l'il Lounge Motel and sit in a circle holding hands and praying for one another's children. We are blessed to be surrounded by Believers even here. And we are soooo blessed to have you in our lives, praying on our behalf and also doing the practical things that need done at our house. Thank you all for the visits, cards, money, food, and emails of encouragement. It truly builds us up when we open our mail and there is a scripture or some other word of hope from you. You'll never know how many times you have comforted us when we were down.

A friend of ours wrote a song for Alynna. She sent it last night by a mpg file. It is beautiful and we all just sat listening to it over and over, crying.. Beautiful words, April -- thank you so much! I'll share it if she gives me permission. Otherwise, I've just forwarded it to family because she said it was for the family.

Time to get our routine started. Please continue to pray. We have a mighty God and His timing isn't our timing, but He has a great plan for Alynna. We know that.

Love,
Mike and Darla
Jacelyn and Matthew
Alynna Faith
~Wednesday, July 22, 2009 8:37 AM, CDT

Good morning. ... whatever day it is. A new family has moved into our Lounge Motel. Let me just say I have a new appreciation for my hubby who has a near silent snore... just a l'il pffffftttt. This poor lady in here was rocking the walls all night. Another younger gal sleeps sitting straight up. We had one empty recliner last night and I was going to offer it to her as it was beside mine. But when I went to her she was sound asleep and I don't think she would have fit in the recliner anyway. Speaking of which, I note my hubby has left me the breakfast of champions -- a Ding Dong and a Coke. ?????? What is up with that? He usually brings me a cup of coffee so I can enjoy it while I do the morning update for ya'll. I think he pulled a l'il switcheroo today. He's probably not thinking clearly - Doc Roser had to put him on meds last night for a nasty toothache. Thanks, Doc, for calling that in. However, I just googled the closest CVS -- turns out it wasn't in the best part of town. You know you are in trouble when a sign at the checkout reads: "Free HIV testing in the parking lot Tues, Wed., Thurs". I am NOT making this up!

I know you are here to learn about Alynna.... remember I don't have my coffee yet..... I'm trying to wake up, tho. Hang on, I'm going to walk to Lynnie's room and see if Mike is drinking my coffee. This is just too weird. He ALWAYS brings me my coffee. Been married 34 years -- always coffee, never a ding dong and coke. Be right back.

K. I'm back. Had my coffee and I'm fully awake now and can tell you the GREAT NEWS. Lynnie had a wonderful night! Praise the Lord! She looks soooo much better today. She peed 10-16 cc's each hour last night (she was struggling to do 3 before). Pee is good. I made up pee songs last evening and sang them to her; I asked for special pee prayers. I told the nurses it was the pee prayers. The nurse also said she was awake and very alert last night and didn't even throw one of her Lynnie Fits when they changed her bed. Her nurse was Colie (short for Nicole) and she was wonderful. She has her bed all arranged very cute with all her stuffed animals strategically placed to help hold tubes and such. Cute. I took tons of pix and will upload some to share.

Mike and I have to leave today -- Mike to the dentist and then to work tomorrow. I suppose I should do something about that Avon that has been sitting on my table since a week ago Monday. And laundry. Mike didn't have a chance to do the laundry I sent back with him on the 13th = Yuuuuuck.

Ok. so here's your report! Its a good one! Very good news. She looks beautiful, not all puffy like yesterday. She had a good night. There's be no more talk about an infection. I think she'll be ok while gma and gpa leave for a day and a half. Thanks for the prayers! YAY

Love,
Mike, Darla, & Alynna
~Saturday, July 25, 2009 10:12 PM, CDT

Date: Saturday, July 25, 2009, 10:12 PM

Hi - I know I'm late posting this but I left my computer in the truck for the evening. It was so nice out Mike and I took a walk and sat outside for quite a while. We got to babysit this afternoon while Matt and Jace went to the zoo. They thought it would be a nice outting and in some aspects it was, but when Jace got back she said there were a lot of people there with strollers full of babies and that made her sad. First the good news: Alynna's left lung was much better today. We are thankful for that. She's taking breast milk through her ng tube, so that is an addition for today. She's still on the vent and she still has two drain tubes. Her bp is staying in the 40's - would like 50's, but this is better than the 20's and 30's! Now for the prayer request: She has a leaky mitral valve. She's had it for a while - they were hoping it would correct on its own. The surgeon didn't want to fix it during the last surgery because he didn't want to rock the boat. However, if it doesn't correct itself in two weeks, Alynna will have to have another surgery to fix it. I can tell each surgery wears her out just a little more, so we are praying for it to be corrected on its own. Jacelyn said today she thinks God is answering the prayers of the little ones -- Lexi and Kylie, Alia and Eli, Jacob and Jacob, Bella and Sophie, Macy and Branten - and all the other little ones who are praying and believing for God's healing for little Alynna. Kari - Jacelyn was able to put the little bunny slippers on Alynna tonight! You would not believe how happy that made Jacelyn. Lynnie has worn only a diaper for 24 out of her 25 days of life. I had to admit, it made me cry when I was cleaning their Ronald McDonald room last week and I came across the diaper bag full of baby clothes -- all unworn. So the bunny slippers are a hit and the nurse was nice enough to let her put them on her. She looks adorable in a diaper, bunny slippers, and about 10 tubes and wires. We've had ups and downs today. Alynna was sleeping soundly when I left her and her granddaddy has just now gone down to sit with her until probably midnight. Please keep us all in your prayers. Love, Mke and Darla, etc.

~Monday, July 27, 2009 7:41 PM, CDT

Alynna has had a pretty good day today, although she seems to have her days and nights confused. When I called to check on her this morning to see how she had been overnight the nurse said she had had a great night, peed 'remarkably' and had two big poops. WTG Alynna! :) We get excited about that kind of thing around here! She did spit up once through the night (all mucus, no feed).. and thought that now that she's more awake she realizes the tube is in and it irritates and gags her... Nothing a little Fentanyl won't take care of though - and off to nighty-night land she goes.

When I came in this morning her BP was up in the 70's!! Much better than those 30's and 40's we were dealing with several days ago! She was awake a lot of the morning, just looking around - taking it all in. One of her IV lines has been leaking so the Dr. came in and changed that and took out the line that reads her left atrial pressure. She looks great today, good color and not as swollen. They discontinued all of her antibiotics... so that means none of the cultures they took during surgery grew anything. Yay - no infections for Lynnie-Boo! They are slowly weaning her off the vent.. She is down to 45% oxygen now.. I believe room air is around 20%.. so thats the goal. She is able to breath on her own, over the vent, and does when she's mad! We all know she's a feisty one!

Kari and Duane came to visit today, and were amazed at how long she is (she definitely takes after Daddy in that aspect..and the temper, but that's a WHOLE other story) It was nice to visit w/ family.. and the homemade lasagna didn't hurt either! ;) We took pictures of Alynna's hands w/ a Sharpie as a reference point, D thinks they're freakishly long.. I think she's just gonna be a volleyball setter!

Well, I better close for now - time to pump aaand..this mama's tard!!

We thank you all for your continued thoughts and prayers. Every time I pray I ask God to heal her quickly so we can get her home and do a different activity with her.. My most recent prayer was for quick healing so we can take her camping :)

Again, thank you for all the prayers - this girl is LIVING proof that prayers are answered!

Love,
Matt, Jacelyn, and Alynna FAITH

~Tuesday, July 28, 2009 2:34 PM, CDT

Miss Alynna seems to be having another good day. When I called to check on her over the night she had been up all night partying with Nurse Colie. Her central line that was replaced yesterday was still leaking, so Colie had to run all her meds through the right atrial line.. Made it more difficult on her b/c of drug compatibility - but that was all the more eventful the night was. Alynna didn't get all the heart medicine that was prescribed (b/c of compatibility issues), but handled it well - her BP never dipped.

They weaned her vent down to 40% today, and will continue to wean by 5% as long as she tolerates it. Her blood gasses have been great today. They removed her foley catheter, so thats one less line - 7 to go! :) jk, I haven't counted.. I know she's got 2 chest tubes, her RA line, a line in her wrist, and the central line in her groin... and on the vent - whats that add up to?

She got moved to a new room today b/c her huge ECMO room was needed for another patient. We've already got her new room all decorated, and made as 'homey' as possible. Mom and I are watching The River Wild in Alynna's room since Duane made the comment yesterday that Alynna's hair looked like Kevin Bacon's. (Thanks for that D... We requested a couple of bows, but they haven't made it yet).

When the doctor came in to tell me that they were gonna change her central line, I asked how she was doing overall. He said she was looking really good. Her color looks even better than yesterday, and her face is back to normal size. I asked about the mitral valve situation and he acted like it wasn't a big deal. He said that he didn't hear much regurgitation when he listened to her. The focus of their attention at the moment is getting all the extra fluid off - said she's got about 150-200 cc's that needs to come off.. and its mostly around her abdomen. They'll do another echo once the fluid is off, and before she comes off the vent to check the mitral valve, and see whether its going to be an issue.

I believe that's all I have to report at this time. We are so thankful that Alynna is having a lot more "good days," and know that answered prayers are the reason for that!

Thank you all!

Love,
Matt, Jacelyn and Alynna

~Wednesday, July 29, 2009 2:13 PM, CDT

Not much to report today - all seems to be going well... They are SLOWLY weaning Alynna off the two heart medicines, as long as she tolerates it. Her BP has been in the 60's most of the day. This morning when I came in the doctors were rounding and the critical care doctor said he thought she looked even better than she did yesterday and asked what I thought - I told him w/ 7 doctors around her I hadn't really gotten to look at her yet! :) She does look better though, the only obvious swelling is in her belly. Last time I checked she had had 10 cc's more out than in. 150 to go! We're back to saying potty prayers to get this fluid off!

Echo looked pretty much the same... Still has some mitral regurgitation, and has a tiny leak where they repaired the VSD during her first operation. Said it was nothing earth-shattering and would probably just treat with medication. Overall heart function was pretty good though.

Other than that, not much to report. She's been sleeping quite a bit today, but was up for a while this morning. Mom and I just finished watching "While You Were Sleeping".. it seemed appropriate!

Please continue to pray for this sweet little life who has already impacted so many. We are truly blessed to have her in our lives, and can't wait to get her home and watch her grow.

Love,
Matt, Jacelyn & Alynna
~Thursday, July 30, 2009 2:10 PM, CDT

I can't believe Alynna is 1 month old today!! The doctors expect us to be here until at least mid to late August.. Siiiigh.. All my time off from the hospital will be spent at a hospital! Can't wait to bring this little girl home though!

Alynna has been doing really well today. I got a note from Nurse Colie (the night nurse).. "Jacelyn, We totally partied all night long! Alynna was awake from about midnight to 4 am. She was happy and wide-eyed"... I'm going to have to bring Nurse Colie home w/ us since she apparently likes to party a little more than I do! :) I got to give Alynna a bath last night and then we put her on the pretty new blanket Nurse Colie bought her, which she looks adorable on. We tried to tame her hair, and Colie looked for a bow - both were failures though.
As for changes with Alynna - today they've decreased her Fentanyl drip (for pain), the Dopamine and Milrinone (for BP), and increased her breast milk. Even with decreasing her BP meds she has been running mid to upper 60's...They're happy as long as she stays above 60.. which she has. The doctor came in a took out one of her chest tubes and her RA. Yay!! So she's down to one chest tube, pacer wires, the line in her groin, the line in her wrist, and the vent. A couple of steps closer to holding her!! Its been waaaaay too long.

I believe thats all the news I have for now!

Love ya'll bunches!