Surgery #2

Today, Monday, July 25th marks Ira Jo's last and final surgery. (Lord willing!) This morning was by far the hardest yet. I couldn't be more thankful for what's about to happen...but every part of me just wants to cry. Why can't it be me going into surgery instead of her? Just as any mother would do, I'd  do anything to take her pain away.
12:36 pm- Ira Jo is being wheeled back to surgery...
Good news...Surgeon said this shouldn't be near as bad of surgery as the first! Thank you Jesus, I needed so badly to hear that!!
2:33 pm- Still working on her, but Ira's doing fine.
3:00 pm- We entered a private room for the surgeon to come in and talked to us.
He said....
"All went well and baby Ira is doing great. The main goal was to reconnect the bowel and that was reached. The only problem that came up was that some of her bowel that the mucus fistula was in, was unhealthy and not able to be reconnected. Therefore, we had to take out 10 centimeters of that bowel just to get to a healthy piece to use so the reconnection would be successful. So there is no more mucus fistula or ostomy bag, but while she was open we took a look at the rest of her abdomen, and there we found a couple calcified cysts but nothing that we were worried about. We are still very unsure of why any of this happened, or why her bowel with the mucus fistula was not healthy enough to use...we've done all the tests we can to figure out why this happened and nothing has showed up. It must just be one of those things that happen with no clear answer of why. Thankfully, I have good hopes for this surgery and that it will be very successful. I've had many of these cases and they do not go near this good, she should not have any life long issue from this, but of course the future is always unclear, but for now I suspect that we have fixed the problem for good. The next step for her is her incision to heal and have her first dirty diaper. Hopefully this will be within the next 5-7 days. After that we will start feeds again, but for now she will stay on TPN...all in all she's doing really well."

4:30 pm- I'm finally allowed to see my baby girl! My heart is so broken seeing all the tubes and the vent in her mouth again...I have NOT missed seeing any of these on her. So badly I just want to pick my hurting baby up, love on her and take her pain away. Mommy is suppose to make everything better and I can't...I can't do anything but hold her hand, kiss her head and sing to her. There is no feeling like the helpless feeling you get watching your baby be wheeled away from you, knowing they are about to have a very invasive surgery done...then you feel it all over again but worse when you see your baby lay lifelessly in a bed in so much pain and there is not one thing you can do to help them. My heart hurts and I so badly want to cry but my eyes have no more tears to cry...I am just SO thankful this is over with and we are past it. Now we rest, recover and pray that when her body is ready, that it poops. Here we are again...praying for poop. Out of everything I thought I'd pray for in my life...poop was not one of them, but hey we will pray for poop!
The next 72 hours are the most critical for her recovery...we are praying hard that the pain goes away quickly and she can be comfortable and heal. We also pray that when the time comes for her to poop that her body has healed itself and will work properly!
Thank you all for your love and constant prayers!
XOXO
Linden, Lani, Ada Lou & Ira Jo <3

Game Plan as of 7/17

The surgeons and other medical staff has came up with a plan!

They started off telling us by saying, "all this could change depending on how Ira does!" so I honestly have no idea if this will be the plan come next week, but for now this is what we know and what everyone is planning on!

We just found out 2 days ago, Friday July15th, that Ira developed a small infection around the mucus fistula sight so they are giving her antibiotics for it...of course a side affect from this antibiotic is diarrhea! Just what she needs when they are concerned about her having to much stool output! Anyways, the plan is that once she is done getting her antibiotics in about 5 days, they are going to go ahead with replacing her mucus fistula tube, and start feeding stool into her lower bowel! Sadly, that means they will have to put her under General Anesthesia . This is not ideal, but in Ira's case doing the General Anesthesia  is the only way to help her! (For right now!) The results of the plan will hopefully be that by putting the stool back into her lower bowel, it gives her body a little longer to absorb the nutrients her body needs to gain and keep weight, as well as getting the lower bowel working again and ready for reconnection surgery. 

We are praying SO hard that within the next 5 days that her stool output becomes exactly what the surgeons and medical staff want to see plus she gains weight beautifully as well so she doesnt have to be put under. We don't really want Ira to have to be put under General Anesthesia , but we must do what needs done to help regardless if it's the most ideal thing to do or not....

But guess what.....everything I just told you could very possibly change tomorrow!! 

On the plus side Ira Jo is working on not being on any oxygen anymore at all! She was off of all oxygen tubes for about an hour in a half but had to be put back on. She's not quit use to being off so it will take her a couple of days still but soon she will have one less thing on her face...but we did get a photo of her being off of it for a little while! :)  

Love to all! :)

Linden, Lani, Ada & Ira

It's been awhile since the last update but we finally have a little news to share!
(more to come regarding this post!)

Other than the countless amounts of fun new visitors Ira Jo got to meet this week,

Ira's over all game plan has changed a little, but lets start at the beginning!

Tuesday (7/5) - Ira Jo finally got to meet her Uncle Jenson for the very first time, and although she has met her Aunt Sean before, this was the first time Aunt Sean got to snuggle her for a bit! 

Friday (7/8) - {1 MONTH OLD!} I can't believe she's 1 month! It was a bit harder than I thought it would be seeing her turn a month old and still be in the hospital, but my baby is where she needs to be, and for that reason I will choose JOY! My baby is alive and doing great at 1 MONTH OLD, so I have many reasons to celebrate...but miss Ira Jo celebrated her 1 month of life by getting some hugs from her great Aunt Becky!!

Sunday (7/10) - [FAMILY DAY!!!!] The first time being together all four of us...the first time feeling like "our little family"....best feeling ever! Not going to lie, I had to fight back so many tears walking into the room with Ada Lou to introduce her to her baby sister for the very first time. Ira was finally switched over to a crib, so we could put Ada right in the crib with Ira, but it definitely was not the way we thought we would be introducing our girls for the first time, but it was still a special moment. This was the first time, the feeling finally set in that I have two girls and they are sisters, and they will one day (hopefully) be best friends...we will one day be a complete family, under one roof, at one supper table, together. Can't tell you how hard we are holding on to that one simple word, 'Togetherness'. It seems like such a distant goal, but we can see the light at the end of the tunnel approaching slowly, but we are so badly longing for that 'togetherness' in our house, as a family, but we are growing in our patience and lets be honest...we have two girls that are 17 months apart...some patience will one day be greatly needed, so growth is good! Just a few hours as a family was amazing for us, gave us an extra push to keep going because we know what will soon be coming! :) We are excited for that day, but we will be patient!!

 "The pain that you've been feeling, can't compare to the joy that's coming" Romans 8:18!! :) 

Gods' gentle and loving reminder

Monday (7/11) - We got some really unsettling news...Ira is having a really hard time putting on any weight and keeping it on. She's been growing very little, but she's also been losing enough weight that it's not equalling out. Unfortunately, that means there is going to be a bigger delay on the second surgery, but it also means they are going to have to start reinserting her stool from her ileostomy bag, into her mucus fistula. The first plan was that she wasn't going have any stool reinserted at all, and they were going to go ahead and do the second surgery and reattach her bowels because her body was using the nutrients from feeds correctly. But the amount of feeds had to go up to accommodate her weight, and the more volume she got, the less her upper bowel could keep up, so they have decided it's important to reinsert her stool, so that her lower bowel could continue to get the nutrients, and hopefully that will allow her to gain weight faster and keep it on. The upsetting part of all of this is, in order for her stool to be reinserted into her lower bowel, they have to replace her mucus fistula with a bigger one. Thankfully, this is not a surgical procedure, but she will have to be taken to specialist that will do this procedure under x-ray. Ira's surgeon reassured us that it shouldn't hurt her at all, he said that your intestines don't have any feeling so that wouldn't hurt, but they will be pushing and messing with her belly, which could cause some discomfort. Worst case scenario, surgeon said they'd have to sedate her and put her back on the vent if something went wrong, but he was pretty sure it would be a very easy process that would take an hour tops to complete. I did ask him why they couldn't just wait and do the reconnecting surgery anyways, because her bowels would then be together and her body could get the nutrients that way, and he said that if they would open her back up and her bowels still be swollen from the first surgery that they would not hold any sort of stitch and they would just perforate again, so we would be right back to where we started. I did learn that it's not the inside of the bowel they are concerned with...its the outside of the bowels. Apparently, the inside of the bowels don't swell or don't swell as bad as the outside of them do! Odd, but good to know! He told me that they don't even consider opening a premies' stomach back open to mess with bowels unless they are a month in half to two months old, but in Ira's case, the head surgeon during her surgery was so surprised with how bad it looked inside that he wasn't really open to doing the second surgery until closer to the 2 month mark...we are only a month in, so we have a bit longer of a wait. But this surgeon told me that we should be thankful because he has seen bad bowel issues and Ira wasn't the worst, but she was up there. He said that her bowels were like concrete, and that it could have been much worse than what it was, and that he was honestly surprised that it wasn't worse. All of this is such a God thing, and it's been amazing to hear what he's done on the surgical part of things and also see what he's doing on the recovery part as well.

Today, Tuesday (7/12) - 11:05 am...we are waiting for Ira to be wheeled away to the specialist for her mucus fistula change. She was suppose to be taken at 10:30 am, but there was another patient who had a complication during his change... (not what mom wants to hear right now!)
12:00 pm...Ira Jo is being wheeled away
1:20 pm... Ira is back. Bad news. Plan back fired. The mucus fistula tube was not only completely clogged, it is stuck. Good and stuck! So stuck the radiologist doctor was to nervous to continue, and chose to wait on the surgeon to get out of his surgery to discuss a plan B & C and so on if needed. The radiologist unclogged the mucus fistula so they can use it, but it's really small so it will probably get clogged again really fast. So the radiologist said in his opinion they will have to sedate her under General Anastasia, which means she goes back on the breathing machine vent. The same vent that took her a month to get off of! :(

Wednesday (7/13) - Still no set plan for the mucus fistula. They did decide that the tube was way to small to feed anymore stool back through, plus the top of the tube fell off where they would even access to the tube...so now there's just a random little string like thing hanging from Ira. The surgeons fellow did, however come to see me and explain what the doctors were sort of thinking. By what he said, they are not leaning towards sedating her with General Anastasia because if they did that,  he said they might as well just reattach the bowels and she would be able to get all her nutrition through her bowels by herself. The bad part about doing that right now, is that she's not even 6 weeks post surgery, so they honestly have no idea how low the swelling around her bowel is, and if it is still pretty swollen they could do the surgery and it would work, but it would set her back a bit because recovery would take a little longer. So they are between a rock and hard place right now. Their main goal at this point is to get Ira to gain and hold her weight. They did say that today she gained 36 grams, which is awesome, and if she continues to do that, then they can continue the plan of waiting another week or two to do surgery. Unfortunately, her weight hasn't been showing the best track record so again everything is so unsure right now.

Thursday (7/14) - Ira doesn't have a breathing machine next to her bed at all!! She's still on a nasal cannula, but she isn't getting any pressure from it to help her breath. In other words...my baby can breath by herself!!! :):) She's just getting an oxygen flow through her nasal cannula and the hook up is coming from the wall, but there isn't one of those great big stands next to her bed anymore! (In the one picture you can see she has two stands next to her crib. The stand on the right with a square shaped box on it, with the colored numbers on the front... that's the one that's gone!) Other good news is that the doctors are for sure setting a game plan today with what to do with her mucus fistula. Hopefully, this will be a plan that they can stick to until they are ready to perform her last surgery, but we will see. Pray that the doctors can make their decision with confidence and certainty, and not be unsure whether it will work or not.

Sorry for not getting you all an update sooner! Every time I thought I was going to get to post something, the plan changed. I was trying to wait for the game plan to be some what set, but they still are unsure of it. So when I know, I will let everyone else know, but for now welcome to my world of patiently and anxiously waiting! :) lol

Again I'd like to thank everyone for their continued prayers for Linden and I, and our girls.

Ira Jo is quit something, our family is beyond smitten with her (as the pictures will show) and I hope and pray that one day, all of you who have been praying for her, will somehow get to meet the little bundle you've been so faithfully praying for. We've known as Ira's parents that her life has been a complete miracle from the beginning, but just yesterday, even the surgeon himself told us that he has seen many babies with bowel problems similar to Ira Jos' not live, so to him Ira's miracle has been something amazing to watch and be apart of. I know I would not be sitting here writing all of this good news if it wasn't for Gods' miraculous power and love, but Linden and I also wouldn't have been able to do any of this without the love and constant prayers from all of you. So please hear me when I say, we will never be able to repay you for all your prayers, but they are so greatly appreciated.

Love you all!

Linden, Lani, Ada Lou & Ira Jo Sink

 

 

He performs wonders that cannot be fathomed, miracles that cannot be counted! Job 5:9

What an amazing weekend this has been for us! 

Starting this weekend out, Linden and I prayed so hard that our presence would be a great help for Ira during her recovery and her growing process. We also prayed that God would allow us to see Ira make some great strides during our stay...and of course God answered our prayers.

Linden and I got to the hospital late Friday (July 1st) night, stayed the night at our hotel, then spent all day Saturday (July 2nd) at the hospital holding and loving on Ira Jo. Saturday evening we just really felt that we needed to get away for a just a night and have the next morning to relax and have a bit of fun before returning to little miss, so we decided to secretly take a quick 2 hour drive down to Lake Cumberland, and surprise my parents and Ada Lou for the night. We left the lake Sunday (July 3rd) around lunch time and headed back to the hospital. During our travels back I saw that I had missed a call from the hospital and they didn't leave me a message. Usually, the hospital calls with an update on Ira and if I don't answer, they leave a message. Well, this time they didn't. We didn't really think a whole lot of it because we told them we would be back Sunday afternoon and that I was staying all night, so we just figured they would tell us what the updates were when we got there. Well we walked in, and there was a new nurse working on Ira, so we were introducing ourselves and I just so happened to turn around to set my bag down real fast and that's when I realized there was something written on her board. 

{Plan...wean vent,  extubate Mon?}

Me- What's extubate Monday on Ira's board for?

Nurse- Oh, they didn't call you and give you the update?

Linden- They called, but no one left a message like normal...

N- Oh, well then I guess I better tell you the news! Tomorrow they are going to try and extubate her!

(Cue Linden and Is' completely confused facial expressions!)

N- That means tomorrow they are going to take this breathing vent tube out of her mouth and put in a nasal cannula! Her past couple of blood gas counts have been perfect and at rounds this morning everyone thinks she could possibly come off of the breathing machine, so we are going to try and take it out tomorrow and see how she does! 

Tears...lots of tears streamed down our overly excited faces! 

God had heard our prayer and was about to answer it!

Monday (July 4th, Best Independence Day Ever!) Ira Jo got her breathing tube out at 3:30 in the afternoon, and of course, first thing this mom did was dress her baby and pick her straight up! Very first time ever being able to pick her right up from her bed and hold her up against me without having a handful of nurses around to help! 

So badly we wanted to tell you all yesterday when it happened, but doctors and nurses said that some babies don't do very well and need to have the tube put back in, so we decided to wait to see how she did throughout the night, and see what her stats were when we got here this morning, and what do you know....she's doing great! 

One big prayer answered, and boy does it feel good! This was exactly what Linden and I needed! Finally, we can feel like and can see that Ira is making great strides, and this is giving us the push we need to be extra patience for her last surgery! Doctors said this morning, all we are doing is waiting for her to grow and develop a little more before her second surgery!

{Prayers Requests...her body uses all the vitamins and extra support through her feeds correctly and she continues to grow and develop. Her lungs continue to develop and do great without the vent, and that she starts growing regularly everyday with her weight and length, so when the time comes for surgery, she will be ready and will be able to recover quickly!}

Thank you ALL SO MUCH for continuing to pray for us and for baby Ira...

God is hearing our prayers!!

We are all SMILES over here in Pod G, bed G2!!!! 

XOXO

Linden, Lani, Ada Lou, Ira Jo

For He knows the plans He has for you Ira Jo!

Hello All! :) 

Fast Update on Ira Jo! 

It's been a few days, but I left the last update with the surgeons discussing what they were going to go with her mucus fistula tube or with surgery...well we got some news and a plan!! :) They have bumped up her feeds! She is currently taking 13 mL an hour and every 12 hours they bump it up another mL! They said she developed just a small amount of bilirubin, but they also said the more they feed her it will eventually go away on its own. It will take time, but as time passes it will go away. So for now they are giving her a small amount of antibiotic for the bilirubin, but they aren't concerned about it a whole lot! Anyways, because they have been continuously going up on her feeds, Miss Ira Jo has gained some weight! She now weighs 5 lbs 15 ounces, and the news we got as far as surgery or the tube coming out was......once Ira is between 6-8 pounds, and she hits week 6-8 post surgery they are going to take the mucus fistula tube out all together and do the reattachment surgery!! :):) Yay! She's doing great growing, and to hear that once she puts on another ounces or maybe a pound, and in about 2.5 weeks, that they are going to seriously talk about her final surgery, is amazing! Their first plan before surgery is obviously adding the pounds and waiting a couple more weeks, but also getting her off the breathing vent! Believe it or not...Ira is almost a month old! We were told that if she isn't off the of vent before she turns a month old, (in 1 week) they are going to give her a medication that decreases the amount of fluid in her abdomen around her lungs, hoping that she would be able to get the carbon dioxide out completely be herself! Other than the carbon dioxide not coming completely out, she is doing really well breathing! All her vent numbers are where they are suppose to be, so we are just praying that her blood gas levels can go lower and stay low for good!! (Prayer Request!) They say that her blood gas levels should be in the 50's and hers are in the 60's right now, so not to terribly far to go, but for all of us waiting for the vent to come out, it seems like its taking forever! That has to be the biggest prayer request of them all....PATIENCE!!! Not only are we waiting for her blood gas count to come down so she can be taken off the vent. We are waiting for her to gain weight, and we are also waiting on time to pass! Two in a half weeks and she will be 6 weeks post surgery; they will talk more seriously about the surgery, either they do it, or they wait a couple more weeks, then we wait again...we wait for her to recover for a couple days before introducing feeds back to her again, we wait for her to have a bowel movement into her diaper so we can see the surgery worked. We wait, we wait, we wait! I have a feeling I know one of things God is trying to teach us (ME) through all this!! lol :) Other than that we don't have any medical news, but today, July 2nd marks Ira Jo's very first time being held by her daddy, and let me tell you...she is for sure a daddies girl and I bet you can guess who is LOVING that!! :):) 

Thank you all for your constant thoughts and prayers, we can't tell you how much we appreciate them! Love you all! ~Linden, Lani, Ada Lou, & Baby Ira Jo <3

{P.S. Look at this cutie at Lake Cumberland this weekend with Mamaw and Papaw while mommy and daddy spend the weekend with Ira Jo!! LOL! :) Oh how we love and miss our Ada Lou!!}