7-29-17 Ira's at Dayton Childrens

Don't worry, Ira's bowels are perfectly fine!

 She ever so kindly allowed us to take a break from that area and has redirected our attention to her upperbody! Upperbody being her brain and her overall immune system. 

Thursday afternoon, Ira gave us quite the scare. I wasn't feeling well, so my dad came over to play with Ada so I could sleep. During Ira's afternoon nap she unknowingly started to sieze.  Normally, she will sleep for 2 hours, so at 4:30 I went upstairs to check on her. I found Ira covered in vomit, drenched in sweat and completely unresponsive. Her body was completely limp and her head and eyes were turned to the left and did not move. Her legs and arms were convulsing. I screamed and my dad came running up the stairs, he picked her up as I rushed to find my phone to call 911. While holding her, Ira stayed unresponsive but started to have convulsions again lasting only a couple of seconds. Paramedics showed up at 4:45 taking Ira and I in the back and my mom and her road rage in the front, to Wayne in Greenville. There was no time to get her to Childrens, because her breathing was severely compromised. Upon arriving at Wayne, the charge nurse on duty that night was the only person in the ER that had any experience working with babies. So, between her and my Aunt Becky, they were able to stabilize her enough to be transported by CareFlight, despite her having another convulsive seizure and extremely high fevers. Linden road with her in the helicopter and arrived at Dayton Childrens in a matter of 10 minutes. At 7:20 Ira had a CT scan that came back normal, at 8:00 she finally came out of her seizure and was able to make eye contact and recongize Linden and I. She started to act more like Ira Jo but was very groggy, due to all the anti-seizure medication and her 103 fever.

Friday morning at 11, Ira Jo got a EEG which also came back normal. We were moved from the PICU floor to a more relaxed floor because Ira showed good improvement. She was still having fevers around 101 but was acting more like herself. We got news that her blood cultures taken from Wayne were growing bacteria, and was pointing them towards either a bacterial infection, sepsis or bacterial meningitis. The neurologist came in and explained her seizures as Prolonged Complex Febrile. PCF meaning a seizure that accures with a spike in fever, lasting more than 15 minutes with no alterness between seizures (for example, Ira's lasted 3 1/2 hours). He explained that she will have to be closely monitored for any signs of illness that cause fever; teething, runny nose, cold etc. We were also trained first aid for seizures, given a medication that needs to be with her at all times and told that anyone who may watch her needs to know how to administer first aid as well.  She has a 50% chance of having more of these seizures because they are prolonged and complex.

Saturday... we were told that we might go home, until they talked to the infectious diease department which said based on the bacteria they found growing in her blood cultures, they felt she needed to stay at the hospital until they could rule out bacterial meningitis or another bacterial infection in her blood. According to the doctor, bacterial meningitis is not something you mess around with. Which brings us to present moment where we are currently waiting for her spinal tap at 8PM. They said that we need to be praying that they dont find any bacteria and little to no white blood cells in her spinal fluid. 

That is all the information I have as of now. We should get her white blood cell count from her spinal tap back in about 10-15 minutes after the procedure is done. We wont know about the bacteria for a couple days. They did say if it comes back as meningitis they will have to treat it very quickly and hard. They will have to place a PICC line to administer medications to get it to the brain faster. We would be able to go home with the PICC line but because it's placed in her arm and setting just above her heart, it makes me very very nervous. So if you could say a prayer for the spinal tap, the results, and for us to adjust well to whatever result we get, that would be greatly appreciated. Of course a prayer for Ira to heal quickly would be wonderful as well. 

Thank you!! 

Updates coming soon.

. 

Monday, October 24th 2016, 139 days in the NICU

I know it's been awhile since Ira's last blog update,  and I know everyone who is following along is wanting to know how she's doing. The biggest thing that has been going on, is her feeds.  She hit full feeds about a week ago and she has been working on consolidating her feeds into every three hours. She's currently getting a 2 hour break, then getting her full feeds over an hour. She is still throwing up a lot, and at first we thought, Oh No, but they said she's a Happy Spitter  and they aren't worried about it! So, thankfully that won't hold us back! They were wanting to send us home on her taking gravity feeds, which is pretty much a bottle but through her GTube, and not ran by a pump. They were also wanting to send us home with her not throwing up a whole lot......but, we found out today, Monday October 24th, that Ira has some sensitivity issues to my breast milk, so for now she's on formula until her throwing up/gagging stage comes to a near end. Then thankfully, we can use the 10+ gallons of breast milk I have pumped for the last 4 in a half months! I just  about died at the thought of pumping this long, and her not being able to have all of it!!! Ahhh!!!! 

But do we have some news for you....

We found out Thursday, October 20th....

that we are HEADING HOME!!!!!

We will be coming home with a feeding pump and working on consolidating her feeds at home! We will have lots of follow up appointments, and will have some medical employees come to our house every week or so, to help Ira learn to suck from a bottle. But, we are heading HOME!!!! Best part is, we are heading home.............TOMORROW!!!!!!!! (Tuesday, October 25th!) Hopefully discharge will be between 11am and 1pm! We have to stop by Dayton Children's to pick up our supplies, but we will soon be showing Ira her home! FINALLY!!! It's been a long time coming, but our NICU journey, dare I say, is over!!!!
We would LOVE for all of you to visit Ira; however, we are asking for just a few short days to get home and get use to our "new" normal!! I will definitely let everyone know when we are accepting  visitors. All we ask is that if you or someone in your family has had anything, even a runny nose in the last month, that you wait just a little longer to meet Ira. We also ask that if you or anyone in your household is unvaccinated , that you as well, wait just a little while longer to meet Ira Jo. Not that we want to start problems, but Ira's body is working so hard to recovery, develop, and heal, that she could not take getting sick. Specially, with a big illness that a vaccine could prevent. We were told there has been a big outbreak of whooping cough and there are many children being hospitalized here at Cincinnati. So we are being EXTRA careful! Whooping cough could do lots of damage to any baby or child, even adults, but specially to Ira. Ira was obviously born prematurely and her lungs weren't 100% developed. Because her lungs weren't 100% developed, she has a small case of chronic lungs disease. She will eventually grow out of it, but we are going to do everything in our power to keep Ira  Jo out of the hospital!!! We are DONE with hospitals!! So please don't get offended by our choices. They are not personal by any means...we are just making what we think is the best medical choice for our child. We hope and pray that ALL who have been following along, loved on us and prayed for us, get to meet our big NICU miracle soon! Thank you for understanding, and your  cooperation. Also, and most importantly, THANK YOU for your prayers, your sweet uplifting messages and for all those who have helped by giving financially, meals, or anything!! We definitely couldn't have done any of this without your prayers, love and support!
We will be posting LOTS of pictures on Facebook and Instagram, so make sure you stay tuned!!!
:):):):):):):)
EEEKKKK!!! We are so excited!!
The Sinks! 💕

Psalm 37:5 {9/19/16}

Commit your way to the Lord, 

Trust also in Him,

And He shall bring it to pass.

Psalm 37:5

Nothing worth doing --and doing well-- comes quickly or easily. 

But the wisdom, patience, strength. and even joy God provides will definitely help!

"Slow and steady wins the race" that's the phrase that has been programed into our heads since day #1,  and it could not be anymore accurate or frustrating!

Saturday, September 17th, Ira Jo official started feeds! 1 mL an hour and she stayed at 1 mL until today, Monday, September 19th. She's now at 2 and hopefully each day she can go up by one or two until we reach full feeds! She has had multiple dirty diapers since her surgery, so they know things are moving from top to bottom, which is showing them that the surgery worked! So far they have still not been able to figure out why any of this happened and that's okay, we know God has some amazing reason why this happened and we are satistified with that, but for now all we know is that Ira had about 10 inches of bowel that just didn't work! 

At this point we are doing what by now you'd think we'd be great at...but we definitely aren't, or at least we don't feel like we are...but we are...... waiting!!

We have specific instructions that Ira needs to reach a point where she can take 90 mL (3 ounces) every 3 hours by bottle and have at least one dirty diaper every day or every two days in order to go H-O-M-E!! We also know in order to get where we need to be its going to be awhile and that's okay! Like I said before...nothing worth doing right comes quickly or easily, and it's going to take much patience, strength and choosing to find the joy in every extremely long day! 

(Now, if I can remember that when I have two screaming girls at home!)

But we are at the very beginning very anxiously awaiting that drive home! We are trusting in God and giving Him all our weariness and knowing that This Too Shall Pass! We will walk this journey a little longer, very slow and steady, but with God's help, we will conquer this race!

All I ask is that you please pray for the feeding situation, that she continues to do well with her feeds, she continues to pass stool like she has been..and that Linden and I don't loose our minds! :P 

My constant reminder is that this too shall pass! This is a small phase in our life that will soon be a distant memory.

Thank you all for your on going prayers and loving thoughts.

We are truly blessed by you all!

XOXO

Linden 

Lani

Ada Lou

Ira Jo

Psalm 37:5 {9/19/16}

Commit your way to the Lord, 

Trust also in Him,

And He shall bring it to pass.

Psalm 37:5

Nothing worth doing --and doing well-- comes quickly or easily. 

But the wisdom, patience, strength. and even joy God provides will definitely help!

"Slow and steady wins the race" that's the phrase that has been programed into our heads since day #1,  and it could not be anymore accurate or frustrating!

Saturday, September 17th, Ira Jo official started feeds! 1 mL an hour and she stayed at 1 mL until today, Monday, September 19th. She's now at 2 and hopefully each day she can go up by one or two until we reach full feeds! She has had multiple dirty diapers since her surgery, so they know things are moving from top to bottom, which is showing them that the surgery worked! So far they have still not been able to figure out why any of this happened and that's okay, we know God has some amazing reason why this happened and we are satistified with that, but for now all we know is that Ira had about 10 inches of bowel that just didn't work! 

At this point we are doing what by now you'd think we'd be great at...but we definitely aren't, or at least we don't feel like we are...but we are...... waiting!!

We have specific instructions that Ira needs to reach a point where she can take 90 mL (3 ounces) every 3 hours by bottle and have at least one dirty diaper every day or every two days in order to go H-O-M-E!! We also know in order to get where we need to be its going to be awhile and that's okay! Like I said before...nothing worth doing right comes quickly or easily, and it's going to take much patience, strength and choosing to find the joy in every extremely long day! 

(Now, if I can remember that when I have two screaming girls at home!)

But we are at the very beginning very anxiously awaiting that drive home! We are trusting in God and giving Him all our weariness and knowing that This Too Shall Pass! We will walk this journey a little longer, very slow and steady, but with God's help, we will conquer this race!

All I ask is that you please pray for the feeding situation, that she continues to do well with her feeds, she continues to pass stool like she has been..and that Linden and I don't loose our minds! :P 

My constant reminder is that this too shall pass! This is a small phase in our life that will soon be a distant memory.

Thank you all for your on going prayers and loving thoughts.

We are truly blessed by you all!

XOXO

Linden 

Lani

Ada Lou

Ira Jo

Surgery #3

Surgery #3 = Complete!

Remember how this surgery was to determine whether we got an ileostomy bag and a mucus fistula, or we don't get anything and Dr. Helmrath just resects the bad bowel and reconnects the healthy???

{Expect the worse...pray for the best!}

 WE GOT THE BEST!

Dr. Helmrath is confident that Ira Jo's bowels are going to work properly this time! Obviously he's not God, so we're praying things work, but from a surgical stand point, he is very hopeful!

(Huge Sigh of Relief)

Dr. Helmrath told us that the surgery went well. They opened her up with the same incision and he said there didn't seem to be a whole lot of scar tissue around the incision area, but further up, closer to her stomach there was quit a bit. They did in fact put a G-Tube into her stomach and Dr. Helmrath said it was a better they did it now while she was already in the OR rather than wait, because it would have been very invasive. When the surgical team looked at the piece of bowel they reconnected the first time, they found a big ball of scar tissue around the two ends they connected, and a leakage/hole. Before we thought that her bowel had perforated in another spot on the opposite side of her body, but that wasn't true. Instead, the hole that developed in the ball of scar tissue had leaked and all the stool that came out of it just built up on the opposite of her stomach, causing the infection. Dr. Helmrath said that the leakage at the reconnection sight would have never healed on its own, but he did mention that he could see a blockage of stool in the part of the bowel that just didn't function right. The same part of the bowel he wishes he would have taken out the first time. So he went ahead and took out that whole area, 10 centimeters or 4 inches to be exact, then he reconnected two healthy ends! :) He said she didn't lose but a few tablespoons of blood!

Yes, he is that good! 

Ira is obviously in pain, but if you didn't know, your bowels have no nerve endings...so her bowels aren't causing her any pain. Her incision and her stomach muscles hurt and that's it!

Dr. Helmrath is an amazing surgeon! We can't say enough good things about that man! It was truly a God thing that we got Dr. Helmrath as surgeon! It really was!

That's all about the surgery; however, I do want have a share a story with you folks!

I'd like to show you just how awesome our God is and continues to be through this whole process!

So some of you may know this already, but just last week when we found out we were starting over, Dr. Helmrath came to Ira's room and I just so happened to be here! 

Thank goodness!

He wasn't coming for any update or any new news...instead he was coming to spend sometime and just check up on Ira! He was quit thrilled to tell me that the days that I'm not here and he is...he makes it a part of his day to come and talk to Ira and see how she is! :)

Well I thought while he was here I might as well ask about his research and how it's going!

Turns out... Ira Jo has helped him further his research a lot!

He was telling me about how he works on regrowing bowels for transplants and etc...then he told me "Im thankful for two reasons. One because I was only on call that one week in June that Ira was born and two because you signed the paper giving me permission to research on the things I have taken from Ira. I have been able to grow an entire new bowel system, muscles and all. Literally everything your bowels need to work correctly. I also have an esophagus, and a stomach growing, all from the things Ira didn't need. Once they are fully developed, I will be able to do a transplant for another baby that needs it. Your daughter will help save other babies lives."

I remember asking God when this all started, why he would use the one thing in this world I loved most to teach me whatever lesson I have to learn. Then also why He had to do it like this...

Well, it turns out God is trying to shows me that not only does He love my children more than I do, but also because He loves me more than I love my own kids. I need to learn to trust Him with EVERYTHING in my life, my children included.  I need to trust and be patient, along with everything else under the sun I need to learn! Plus, He showed me that every single little detail in His plans matter...Ira having a bowel problem, the fact she was a preemie born just the right week for Dr. Helmrath to be her surgeon, his research project and so much more... all of it, all of it mattered. God is truly always for us!

Starting Over!

Okay folks, hang on because we are going for another ride! 

We are starting over from square one! 

So as you all know, Ira has already had 2 surgeries. With the first she had the mucus fistula and ileostomy bag. With the second they reconnected her and hoped she would get better and things would start working correctly, then we'd be able to go home.

 Attempt #1 = FAIL

*If at first you don't succeed, try try again!!

*Don't give no for an answer!!

*Just keep swimming!!

(Every other "don't give up quote"...enter here!) 

To explain...after Ira's first surgery, her body started stooling out of her incision. Her body had made its own mucus fistula internally, and was leading her stool out the path of least resistance. Dr. H (head of the surgical team...his job is literally bowel problems!) said that he was pretty sure that her bowel had perforated again, and the reason for that was because there is a part of her bowel that just doesn't work at all. We have no clue why it doesn't work, but looking back he wishes really badly he would have just taken that part out while he had the chance. But he was trying to be hopeful and give her body time so that it may heal up and start working correctly on its own.

Eventually, her body closed up that hole, and that's when we all got excited because she was finally stooling through her bottom! Well, we got excited...not for no reason, but not the reason we were wanting! After her body stopped leaking stool out of her side, Dr. H was nervous that something like this would happen. She'd get sick. Thankfully, she didn't/hasn't gotten near as sick as she could. Her body...rather than continuing to stool out her side, closed one hole, backed up the upper part of her bowel (because remember that one section of her bowel doesn't work at all), and created another hole on the other side of her abdomen! Well that hole and mucus fistula, unlike the 1st one didn't have a way to get the fluid/stool outside of her body! So she was stooling out, internally! That's why she got sick! Her bowel perforated again, her body got an infection, her belly got very swollen, her fevers were high and finally they caught the build up of fluid/stool. So they placed a catheter into her abdomen to drain the build up...they got out 3 ounces of fluid.

>>GAME  PLAN!!!<<

1. Let her heal this week and get this infection under control, hopefully that means delt with!

2. Not this week, but the next...go in for surgery #1 (technically surgery #3), make a mucus fistula and ileostomy again...AND place a feeding tube into her stomach! (Will explain the feeding tube in a minute)

3. Wait until she recovers and they make 100% certain that all her colon works (feed her)...wait a little longer...preform surgery #2 (technically #4)  and reconnect her bowels.

4. Heal up, start feeds, teach her to eat from a bottle during the day and get a constant feed during the night through her feeding tube, then....GO HOME!!!! 

So yes, we will have a daughter with a feeding tube in her stomach.

No, you will not see it! (Unless you ask!)

No, you cannot touch it!

Yes, it's awesome!

Yes, it kind of makes me nervous! But oh well!

No, it will NOT be forever!

Yes, that means it will be temporary!

Our baby girl will be 100% PERFECT and pooping like a champ before we all know it! 

The reason she will have a temporary feeding tube is to help her gain weight faster. She will have the feeding tube, which looks just like a cap to a beach ball that you put your mouth on to blow up, and she will have it until she gets a little older. How long? Don't know. Don't care. It will be placed right on the side of her stomach and her clothes will cover it up.

We will have to change it out, just like an earring and put a bigger one in as she grows and eats more, but like I said this is just temporary! 

Eventually, they will just pull the feeding tube out and her body will heal that spot up all on its own, so there is no surgery needed to take out the feeding tube! 

Now...the Game Plan could be effected in a major way IF Dr. H, while in surgery...sees that Ira's colon looks AMAZING!! If it does look amazing, he may be able to just take out the bad section of bowel, reconnect and be done. We are all pretty confident that her colon works correctly because we have seen it, but Dr. H says...better to be safe than sorry. With this upcoming surgery she will lose more bowel, but if you didn't know...as your body grows so does your bowels. Your body makes more bowel as you grow and develop. So Ira will be fine as she gets older and has more bowel!. Either way,  this upcoming surgery, they will either make a mucus fistula and an ileostomy, or they will reconnect the two bowels. The rest of the plan will be the same IF all things go accordingly!

Your constant prayers have been much appreciated, but prayer warriors, we ask that you still make mention of Ira Jo! We've been on such a long journey and still have months to go.

Thank you for all your love and support

~Linden, Lani, Ada Lou & Ira Jo 

2 Steps Forward 1 Step Back

To sum up NICU life...two big steps forward and then one big step backwards! :(

Just when we get excited about one thing it all changes and breaks a little piece of your heart all over again.
Wednesday, August 10th, we were SO excited. Ira got rid of her breathing vent and all her tubes! Her sweet face was completely clear and we could finally see her cheeks with no tape on them! The whole day was so needed! The snuggles were none stop! Daddy even took off work to come down and snuggle sweet baby!! Have to get those kisses in on the clear cheeks while you can...because just like this, everything changed. After we left Wednesday, Ira threw up 6 times. It was just stomach liquids because she's not getting feed yet, but they were hoping she wouldn't throw up at all. So they took an x-ray and decided to put her suction tube back in her nose and into her tummy to suck out all her stomach juices. The x-ray showed that her stomach is enlarged and unable to do its job correctly. Yes, it has worked correctly before because she was on full feeds before surgery, but it's not working correctly now. :(
They obviously want to get her to start getting milk so that her bowels have more to work with, so they've came up with a plan. On one side of her nose she will have the suction tube in her stomach...on the other side of her nose, they are going to put a feeding tube in past the stomach all the way to the top of the bowel and feed her bowels directly. They are hoping that will help her bowels have more to push threw and hopefully work correctly or faster. She did have 2 dirty diapers that she has pushed out herself; however, she hasn't pushed anymore out, so they have had to help her. They do whats called irrigation every 8 hours...I'm sure you can all guess what happens when they do that!  It helps her that's all that matters! That and it doesn't hurt her at all! Anyways, that's the plan for now. The surgeon was honest with us and said that the stomach issue...yes, it's a pain, but it's not a surgical procedure...in fact it's something that will go away with time and if it takes a long time (he's seen cases were it takes months for the stomach to work again) we can come home with a feeding tube and little by little her stomach will learn to work again. Of course it's not ideal, but we will do WHATEVER is needed to help our baby! The bigger issue would be if her bowels closed where they were reconnected. X-rays are showing that that has happened a little, but not enough to be worried. If it does happen there would be another surgery and just that much longer of a stay. (Praying that DOESN'T happen!) But also if her bowels don't start pushing out the stole by themselves, she will have to be irrigated every day, every 8 hours, and yes that is something we can do at home as well, but they are not fond of the idea of letting us bring her home and doing that right now. They aren't comfortable with us bringing her home with two tubes in her face. (Pray she starts doing EVERYTHING herself!!!) Surgeon said there was a boy they kept at the hospital for 3 extra months to watch and irrigate everyday..then one day his colon woke up completely and he was able to go home! I was happy but my eyes got huge at the sound of 3 extra months! The surgeon looks at me and so sweetly says, "I know you want your baby home and we want you to have her home, but we want her to be safe. We don't want you to have to worry about anything..even though we know you will...but I do want to tell you, your family has a good couple more months here at the hospital. Specially, with this stomach issue now showing up. So, please don't get your hopes up on having her home for awhile, but obviously we don't know for certain so we will just hope her stay time is much shorter than we expect!"
A smile on my face...my heart on the floor.
We knew it was going to be a long road to recovery, but like I said..when you see the two big steps forward, you get so excited, then you're taking that big step back, and it hurts. We are just praying she comes home for Christmas!
There is so much to pray for...we feel selfish to ask for a miracle, but we know God is capable, and in the end we will be happy with whatever God's plan is because Thy Will Be Done!

Prayer Requests
1. Ira's bowels don't narrow, close, or develop any blockages.
2. She starts pooping by herself, at least once a day...out of her bottom.
3. Her stomach size goes down, and it starts working properly so they can feed it rather than suction it.
4. Over all health and development...that everything can just start working the way that it's suppose to so that she can be a happy healthy little girl!
5. Mom and Dads hearts are feeling very weary so prayers that we find peace and patience on this long constantly changing road.
6. Ada Lou is feeling plenty of love and attention through all this..specially because we honestly have NO idea how long our lives will be like this.

P.S. Don't be alarmed if this all changes and this isn't the plan by like..oh Morning? Sorry everything is so unpredictable!! Things are just getting a lot more complicated than just dirty diapers!