Beanies for Andie

We have been meaning to get around to this and I am so glad that Danyele at A Thorn Among Roses decided to encourage the bloggy world to get involved and send Beanies to Duane & Brooke.

Here are a couple of her kids making pictures for the hospital staff. Too sweet, huh?!




With that I encourage you to do the same. And I thought it would be neat if you took a picture of yourself with the Beanies that you bless Duane & Brooke with. So we can post them here and show who's sending them in!

Let's help Duane & Brooke with this part of Andie's legacy. And flood them with Andie's Angels to take to the hospital to bless the other babies that need Beanies as part of their care!

Send to:
Duane & Brooke Paulus
26910 North 54th Avenue
Phoenix, AZ 85083


THANK YOU~

Update with Memorial Pictures

I know it has been a long time since we have posted on our blog. As you all know it has been very hard for us since Andie's passing. We miss her soooo much. I still can't beleive it and keep hoping I went into a coma during labor and when I come out she will be laying beside me. No one can understand the pain of losing a child unless you have been through it. I know she is with us all the time and she knows how much she is missed and loved. I miss my little angel peanut girl.

We have had sooo much support from friends, family, and people all over the world. You would not beleive all the beanie babies in our house. We probably have around 450right now and I know more are coming. We are going to take them to the hospital this week. We will keep taking them there forever. This is Andie's Legacy. We will call them Andie's Angels. As we all know she is a very special angel.

I cannot begin to thank all of you for the cards, food, comments on the blog, prayers, beanie babies, and just being there. I hope one day I can talk to you all and thank you in person.

Somethings I have learned through this whole process, you never realize how many sick babies there are or how many people are going through what we are when you are not close to the situation. Now we hear from people everyday that are in our shoes. It is sooo sad, but there is nobody better to talk to than someone who can understand what you are feeling. I have to thank all our friends, family, and neighbors from all of the listening ears they have lent for hours on hours and the same thing over and over again. You guys have been awesome. I know we give some a real ear full (you know who you are) Thanks sooo much for being such a great Life Coach for us. We have also learned who our real friends are. I have never seen sooo much support and out reach as we have recieved from our friends. In my eyes, they are now our family not just friends.

Another thing I have learned is grieving does some wierd stuff to you. Somedays you feel like you are just sad, then you are mad, then you have it together for a day then one day it ALL hits at once. I had a few days like this. I didn't know if I was coming or going. I felt lost and wanted to find where I was going. I hated it. I wanted to be ok and strong, but I honestly had no control of my emotions. I was sad, angry, hurt, resentful, blamed myself, on top of the fact that my body was still healing and nourishing milk to nurture our baby girl. No wonder I felt so crazy inside. Then my poor husband got to see me crying uncontrollably, wanting to talk for hours and then I was bringing him with me. Then I felt I was losing him so it made me more crazy and want to hold on to him more. I felt like I lost one precious thing in my life, I don't want to lose another. I finally told myself I had to get it together. I put myself through my own therapy. Jessica came into town with her new baby who was two weeks older than Andie, at first I didn't think I could see him . I did it and even held him. They also made me go to dinner. I'm not so hip to the public thing yet. You see a lot of babies everywhere you go. I'm doing it slowly but surely. Then last Monday was the kids first day back to school, and I went and saw people I had not seen yet. It was good and sad at the same time. I saw and spoke with two ladies in our nieghborhood that had babies a week before and after Andie, and saw their babies too. Its all baby step therapy for me. I know this is hard on everyone, but I think its harder for the mom because of all the above reasons. Plus they say twins are so connected, we carry a baby in our body for 10 lunar months how are we not a little more connected to our babies then the outside world. I actually got on Andie's blog for the first time since we were in the hospital the other night and read some of her daily progress,looked at her pictures(which made me miss her even more), and even listened to the music. Then I decided to look at her picutres from when we said our good-byes. I don't know why I just wanted to see her. I think again its baby step therapy for me. We have a big picture of her on our wall and I kiss and talk to her everyday. The other day there was a moth on Duane's office door, and I got about an inch from it and said is that you? Yes, I'm now talking to bugs. That moth stayed in our house for two days. I have not seen it since. The other day Boston had a lady bug on his hand I told him it was his sister. He just looked at me. Yes, they all think I'm crazy. The boys are doing well just trying to get back on track. Someone asked me the other day if everything is going as planned. I said no nothing is going the way I want it to be right now. I want Andie physically with us. I know she will always be with us spiritually. So we are trying to get back to as normal as it can be.

As far as Duane he is probably got it the most together. I guess he is the rock for our family. I know he is still hurting very badly inside. But he is holding it together. I know if Andie was still with us physically her and her daddy would be very close. When we were at the hospital, she would look at him from her bed with such love in her eyes, and the time she grabbed his nose was perfect. All the times her daddy would start his chopper when I was pregnant, she never jumped once. I always told Duane she was going to be his chopper girl. She would be right by his side whenever he was in the garage. I know she is still by him always. Andie Grace please watch over your daddy today while he rides his chopper. Enjoy your ride baby girl while your by your daddy's side. Happy Birthday Daddy!!!!!!!!!!

All in all we are getting through day by day. We will never forget and always miss her. Like a very good friend said to me recently who has been through the same thing. It goes from being a steak knife to a butter knife. It always hurts, the pain just gets a little more dull. I will keep blogging from now on. People have been asking me too. Again, more therapy for me.

Please keep praying for ALL the sick babies. Updates: Baby Ethan is still in the hospital, but doing well. Baby Lewis went home the day of Andie's memorial. It looks like baby Jonah is going home too. Praise God to these an ALL the babies. I know they all have another Angel watching over them.

Brooke

Andie's Eulogy

Written so beautifully by her Daddy.

Andie’s life may have been short lived, but the impact she left on us, and so many others that will never even know her - will live on forever.

Andie was, and still is, a wanted baby. We were very excited to know she was coming into this world to have us – as a family with our other children – Jessica, Chelsea, Brogan, Eric and Boston. We never knew we would be tested in this manner. But we know she has a purpose from God. A purpose that we can only admire as her parents.

Usually in this case of someone passing away – the speaker would have years to reflect upon, and know what to say about there loved one. We only had three weeks to know who our little girl was and who she was supposed to be.

In those three weeks we found out she would awake in the middle of the night – so I could get up and find her looking around for us to come and talk to her. I would tell her mommy - and that gave us the time to speak with her. We knew she would raise her hand around during the day to say – “hey, I’m over here, Come see me”.

We learned how she liked to hold onto our fingers while our hands were in the crib. We learned how she loved having her head stroked by her mommy to make her fall asleep. We learned she like having her mommy read her books and as she looked at the pictures. We learned she loved to grab her breathing tube and scare the nurses, making them think she was going to pull it out. But her mommy and I knew it was a something she held onto and she wouldn’t pull it out. We learned what side she liked to lay on - her left side. We learned she like to grab my nose when I put my face near hers. We learned she had big round blue eyes like her mommy and the chins of her daddy. We learned how much she enjoyed listening to Celine Dion. We learned when she would be awake and when she slept. We learned she liked playing with one of her tubes with her feet. She would always have one tube between her big and second toe.



What did we learn from her? -

I know she brought her family closer. Her mommy and daddy. Her brothers and sisters, Her grandparents, uncle and aunts, and so on. I never met most of Brooke’s family that’s here with us now for this occasion. But as Brooke said – we have gathered for the wrong reason. We should be gathering together to bring Andie home for everyone to meet.

I know she taught us the meaning of gratitude towards our family. We thank our family for being with us everyday at the hospital – showing us your support. We love you and words cannot share our thanks for you.

I know she impacted the world with her developments everyday. Almost 40,000 people learned about our Andie just through her blog. I want to thank Brooke’s sister Kelly for starting Andie’s blog. It took so much pressure off of Brooke and I – so we wouldn’t have to repeat her progress every five minutes. We are still amazed at the number of emails we receive daily from people around the world showing their sympathy and support during this time.

I know she touched the staff at the hospital where she spent her life. I’m not saying that the other children on that floor don’t impact the staff. But I know that Andie has touched their hearts like she was the only child there. And they made us feel Andie was their only patient on the floor.

I know that Andie has placed the grace of giving into the hearts of so many.

I know she was an educator. She taught us the meaning of unity. How so many people could unite with us during this time? She showed us you don’t need to know someone to understand that they care.We know the meaning of giving and what the word support means. She taught us that there are people out there that put others in front of themselves.

We know she taught us the blessings her mother and I have in front of us. The true meaning of friendship. How our friends could come to our rescue during this time to cry with, to lean on, to laugh with and to have them there to listen to us whenever we needed someone to talk to.

We know she taught us that we are not the only ones to lose a child. That we have others close to us – that have lost a child too. And brought them to us to lean on. Because of the many of friends and family we have leaned on, no one can truly know what we are going through except the ones that have been in our same shoes. Our hearts go out to them.

There are so many other things our little Andie has taught us, showed us, opened our eyes to, and how to have strength.

Andie fought a fight that we could not imagine anyone going through. To see what Andie had to endure during her time, it has opened our eyes to the word strength. Even though most of the time she rested calmly – she would awaken and look at us with a sparkle in her eye. Sometimes we could see her give us a smile through all her tubes and wires that was treating her. I could never imagine myself being that strong.

I was compelled to write shortly after Andie passed away. Brooke and I held her and talked to her while she passed away in our arms. It’s a moment we will always have in our hearts. We told her how much we loved her, how proud we were of her, how strong she was, and how sorry we were.

But after we laid her back in her crib, Brooke got her dressed. I had a moment to sit down and felt like I needed to share with the huge family from around the world Andie created during the short time she was here – that she had passed away. I wrote that even though she was here for only 3 weeks, we loved her like she’s been here for 300 years.

I said - We will always love her and miss her like no other. She is very special to us and to everyone that has met her, and has a purpose that only God knows. We are not angry but sad we couldn't share our life with her here. She is so beautiful and has a special presence that surrounds her. We know that she will be in heaven waiting for us. She will always be with us in spirit watching over us.We told our boys that she is with us – and even though they may be too young to understand. One day they they’ll know. Andie will talk to them when they least expect it.

I know Andie will be by Brooke’s side everyday and wants her mommy to be strong and understand her purpose. Brooke spent everyday with Andie and was not going to come home without her. She felt it wasn’t fair for her to come home without Andie. I admire Brooke for being Andie’s mommy.I wrote this from my heart but I could not have wrote this without Brooke. She has given me the strength to write this from the both of us.

So how do I end this talk? I end it with what I know about Andie. I know Andie died in a way that is honorable, courageous, valiant, and unselfish. Because Andie didn’t have a textbook condition – the doctors learned new treatments that will benefit so many children going forward. She will save thousand upon thousands of lives from what the doctors have learned from her treatment.

With that being said I can only end this saying the one thing for sure Andie has taught us...

Andie passed away a hero.

Memorial Service

We will be conducting a memorial service for our precious angel Andie Grace.

Date: Wednesday March 18, 2008
Time: 4:00 PM
Location: The Church of Latter Day Saints - 5104 W. Pinnacle Peak Rd. Phoenix, Arizona

We would like to Thank Bishop Day and his church for offering their services and location for us during this difficult time.

When Andie was in the hospital, they used Beanie Babies for various treatments in caring for the babies on the floor. They are continually seeking more. In lieu of flowers please send/bring Beanie Babies for us to donate to the hospital.

26910 N. 54th Ave.
Phoenix, AZ 85083


Our angel is missed and will be missed always, please join us for her memorial service.

Duane & Brooke Paulus

Update

I just wanted to let you know that we can not thank you enough for the love & support during this difficult time.

A lot of family has arrived at Duane & Brooke's. It is nice to be together, but as Brooke said, it is for the wrong reason.

Duane & Brooke are doing as well as can be expected. The family, friends, neighbors and kids coming in & out help keep their minds preoccupied. At least for some time.

Thank you to those who have blessed our family with food. WOW. The food has been amazing. And plentiful.

The service details should be finalized tomorrow. I will update as soon as I know all of that.

Again, we can not thank everyone enough for extending themselves through this blog or showing up & giving a hug, kind words, and food.

God bless you.
Auntie Kelly & Family

In the arms of Jesus.

What does a dad say in time like this. Today Brooke and I held Andie while she passed away in our arms. The staff is preparing her right now for I don't know what's next, so I know this will be the only time I have to write. And this helps me get through this.



Even though she was only here for 3 weeks, we loved her like she's been with us for 300 years. We will always love her and miss her like no other. She is very special to us and everyone that has met her, and has a purpose that only God knows. We are not angry but sad we couldn't share our life with her here. She is so beautiful and has a special presence that surrounds her. We know that she will be in heaven waiting for us. She will always be with us in spirit watching over us.



We said our goodbyes with the strength of our family and friends at the hospital. I'm not sure what's next but somehow we'll manage to get through this. Parents are not supposed to be in this position.



Please take this time to reflect why we have children and show them how much you love and appreciate them. We will go home to our boys and tell them Andie passed away. They don't know at this point, but we'll figure out the right words. I am sorry Jessica and Eric never had the opportunity to meet her.



Brooke and I would personally like to thank everyone that has given us their support during this time. We could not have got through this without the network of support of that developed from this time in our life. We were amazed at the people who came out to help us, people from my work that prayed along side me and gave me the time to deal with this, and for everyone that I missed in thanking - please know you are not forgotten. And for the support from our family who has helped us through this time and the time that will be in front of us.



I love you my precious angel and miss you already. I'm sorry mommy couldn't put the headbands on you that she so carefully and joyfully picked out for you.



Daddy

Friday Morning.

Auntie Kelly again.

I spoke with Brooke this morning. Andie's saturation is hovering in the mid 70's. And her blood/ox level is in the high 30's.

The kids and I will be leaving for Phoenix tomorrow afternoon. We are more than thankful for the provision for us to be able to go. Please pray for traveling mercies. We have to drive 3 hours to catch our flight out of Nashville.

I am at a loss of words this morning. (surprising to my family, I'm sure!)


So, I encourage you to hold onto Jesus with His words.

LORD, don't hold back your tender mercies from me. My only hope is in your unfailing love and faithfulness. Psalm 40:11

Thursday Update

Yesterday I wrote saying how Andie took a turn south. Well, lets just say that we feel like we're at ground zero again.

Andie stats continued to spiral down during the course of the night. The night doctor had the luck of putting two new IV's in. One in her arm and the second in her neck. The reason why they put the new IV in was because they felt that the one in her left leg was old and possibly getting infected. Also the left leg had started to leak. We felt maybe that's one of the reason why Andie was not coming back to her normal stats like before. We had in the past an IV leaking and once it was replaced she shot right back up to her normal stats.

After the new IV's were put in all the pumps and tubes on the tree of life had to be replaced. Which the night nurse changed out. It took most of her shift to do the deed. But after all her hard work, Andie's stats never really improved but rather crept down slowly.

In the morning Brooke and I looked at Andie and started to look at each other. We knew something just wasn't right with her. Andie was looking pale and gray. Not the right look in the condition she's in. We also realized that we have to accept the reality of how sick Andie actually is. It's a conversation that we didn't want to have, but had to. In the past whenever one of us was down, the other would support the other with words of encouragement. But this morning was different.

We spoke to the day nurse who has been with us since day 1. She knows Andie and has been there through the best and the worst of times. I mentioned to her that we should have a meeting with all the doctors involved which she said "I think that would be best at this time". So we met - the staff dr., the cardiologist, the pulmonologist, the nurse and the hospital social services director.

We had a few hours to wait before all the doctors could meet together. It's very hard to get their schedule to meet for such a meeting, but they did. It felt like forever before we met with them. Brooke and I discussed everything we wanted to talk about. Our mothers came in and immediately fell into our sadness of the reality in front of us. Let's just say it was a very emotional morning.

When we met with the doctors I was first amazed how strong Brooke and I actually were for this conversation. It's a conversation that no parent wants to have with a medical professional in regards to their child. The doctors knew why we wanted the meeting and they started with saying that they have exhausted their toolbox of solutions in helping her hypertension. in fact they had two colleagues from around the US that they had calls into for any advice on something they could try. We know the doctors have tried everything and they've been very patient with us with all the questions we pose to them every day. But they are just as baffled as we are. Probably more so because they know what they're doing. They did suggest that Andie may have Peripheral Vascular Occlusive Disease. Its a very rare disease and is not the best to have. But if so, then this would explain why she has gone south the times she has. But we're hopeful that she is just stubborn and has PPHN. We discussed other topics and options that are personal so I won't go into any further details on the meeting.

After the meeting I went home for a couple of hours. Got some new clothes and did a couple quick chores around the house. When I came back to the hospital there was a crowd in Andie's room. The pulmonologist had an idea to put one of medication that helps relieving stress on the vessels directly into her breathing tube. The amazement was her stats improved and her color started coming back. So at this point we (I mean they) are trying something new out of the ordinary. But so far it seems to be working. Where this takes her, we just don't know at this point. But we're hopeful.

It's been a few hours since the enabilizer was introduced with the milrinone and she started her SAT in the high 90%. She has dropped into the mid 80%. But we just don't know what this means. The staff is still trying different variations of her meds hoping to get that right dosage. We pray for a smooth night. I think we all need it here and we could use some decent sleep for a change. We're used to the chimes of the medical equipment and know the good beeps to the bad beeps.

I miss waking up at 3:00 AM and checking Andie and seeing her big eyes looking around. I would always wake up Brooke and we would talk to her. But now she is heavily sedated to keep her calm and help her heal.

Duane

Thursday Morning.

This is Auntie Kelly.

I just spoke with Brooke. Please, please pray for Andie today.

Her SAT is not where they want it to be. I do not know what to say without sounding negative. But the reality is that she is not doing real good this morning.

Bless her little body, Dear Lord. Continue to give her the strength to keep fighting.
Help her body to get stronger & stronger. She has been here before. And we saw Your hands bring her out of it. We trust you to do the same thing. Comfort her parents. Sustain them. Bless the doctors and nurses with the knowlede to care for her. I pray this in the name of Jesus. Our comfortor, healer and all-in-all.
Amen.

Setback-Wednesday Evening

I know the blog has not been kept up over the past couple of days. So I'll try to recap what's been going on.

Monday there was a stir in the air that Andie was going to come off the respirator. Her stats were doing well, her meds where down, her blood/oxygen SAT was in the high 90's and even in at 100% for most of the weekend and Monday daytime. Discussions were conversed between us and the medical staff about extubating her.

In fact Andie was getting very agitated and showing signs of discomfort with the tube in her mouth. Shortly after shift change we met with the Dr and he said we should remove it and see how she does. So around 6:00 PM the tubes came out of her mouth. Brooke had to leave the room and looked at her friends for support in the waiting room. I stayed in the room to watch the removal the breathing tube. I was amazed on just how fast the tube was removed. It didn't seem to bother Andie one bit that it was taken out. In fact she looked around once it was taken out.

After a minute or so I looked at the monitor - her stats showed great numbers. I was shocked to see just how high they went. They mentioned that she might breathe easier without the tube in her anyway. So once it was out, it did what I thought it would do. I thought her stats would go up and they did. At this point I'm thinking that things are good and maybe we've turned the corner.

Brooke was going to hold her that night but Andie was a little agitated (now keep in mind she's been off of breast milk for almost 24 hours at this point - so she has a right to be fussy) so she was swaddled up in a blanket and fell asleep. We were shocked because the last time Andie was swaddled was back at Thunderbird Hospital. Before we came here. But she liked it and was fast asleep.

Tuesday morning Brooke got to hold Andie for the first time in over 2 weeks. I could see the joy in her face looking down at Andie while they sat in the chair together. The deal was I was supposed to hold her first due to something Brooke lost to me. Probably on of our stupid bets or something. But I let her hold her in place of me. Jamie our nurse that morning did a great job keeping all of Andie's tubes and wires from not getting tangled or pulled out.

Tuesday afternoon something started to go wrong with Andie. Her stats were starting to come down. Especially her blood/oxygen SAT was looking bleak. But the funny (not really) thing was everything else about her looked good. Her skin color, her blood work - everything else looked great. But since her stats were coming down the doctors decided to put a CPAP on Andie to help with the breathing.

A CPAP is a device that hangs on your head like headgear you used to wear when you were a kid when wearing braces for your teeth. Has 2 tubes that go into the nostrils. It detects when you breath and basically injects a larger volume of air when she inhales. A burst of O2 per say.

After that CPAP was put on her I had to go home to take care of the boys. Brooke called me several times while I was out to give me Andie's stats. And they're all coming down.

In the evening they decided to intubate her one more time - so back on the respirator. Has the night rolled on so did her stats - going down. So back on the meds she was weened off of the past few days. So I went back to the hospital at almost midnight.

Today as the doctors and nurses got Andie stable again we had a discussion with the floor doctor and they decided that they'll perform a cardiac catheterization once she shows signs of stability - hopefully Friday or Monday. This will show if her heart is actually showing the correct pressures in each chamber, but more importantly. They can reduce specific medications and check the stability of her heart immediately after removing each medication, oxygen reduction and nitric reduction. Once they have this all completed they can come back and five us a full report and what we can do next in a sense of treatment for Andie.

Her stats are coming down again at this point and looks like it may be a long night. They have increased her Flolan again as well as her Fytenol. They are also giving her some more blood to help with the oygenation.

Please keep your fingers crossed and say a prayer for her. We need for her to get stronger and keep her stats high.

Duane

Tuesday Evening-updated

They had to re-intubate Andie not too long ago.

Please pray for Brooke. She is a ball-o-nerves. And of course, pray for Andie.

God bless you.

Tuesday Evening

We have had some set backs today. She had to go on CPAP because her SATS kept dropping. She is still having a hard time on CPAP. The pressure in her lungs is back up to 95%.

This is NOT good. The pressure was in the 60's last week.

I'm thinking as her mother she was having such a hard time on the ventilator yesterday, that it threw her lungs in a tail spin.

I'm not a doctor though. So now we are raising the FLOLAN back up to 4 and raising her intake of the Viagra to 3.75. They said this could take a couple of days to a couple of weeks to get her settled down.

They just told me she is borderline to be reintubated.

Please pray for her to get over this HUGE hump. She just need to get her SATS up and her Respitory Rate to go down.

Please Please pray for this to happen for her.

Brooke

Back in her Momma's arms!

What a beautiful blessing to see her little lips again.

Well she did pretty good last night. Her SATS would dip down to the high 80's then back to 94. She hung around 94 for most of the night. She did get a little Ativan and Morphine to help make her a little more comfy.

I was going to hold her last night, but once she was swaddled she fell right asleep. I told the nurse I just wanted her to sleep so she could get better. Needles to say, it was kind of a long night. I was sooo worried about her.

This morning after shift change, Jamie asked me if I wanted to hold her. Of course I jumped all over that. I was a little nervous with ALL the tubes. But what a joy to hold My Little Angel again.

I have not held her for two weeks. She nuzzled her little head into my chest and she just slept.

The hurdle now is to getting her to keep her SATS up and her Respitory Rate down a little.

Please God we need your help with this one too.

I will know more after we do rounds this am. I will give more of an update then.

Your continued prayers are greatly appreciated.

Love,

Brooke

*I just spoke with Brooke & she wanted me to let you know that they are going to put Andie on the CPAP. Her Sat level is just a little bit low.

Update from Monday

"Look Mom, NO TUBES!"




This Monday was VERY stressful.



They told me yesterday that they might extubate her today. Well her Stats had been hanging steady at 98-100. Today they put her on the CPAP mode on her ventilator and she did good for a while, then her STATS starting dropping. They were up and down most of the day.



I was not doing well at all. At one point I think I stared off into space fo a while. I just felt we were going back again, and I was worried we were going to replay two Mondays ago. (SURGERY DAY). I just sat, stared, and prayed.



I didn't put it on the blog last night, because if they didn't do it, but then I wanted everyones extra prayers for her. So we were either going to sedate her or extubate her. Finally Dr. willis came in and said lets take it out and see how she does. So I gave her a pep talk, told her I love her and then I left the room so they could pull the tube out.



Thank God I had Okshan, Missy, and Alicia to keep me busy for a few minutes. Then Duane popped his head in the waitung room and said she did great and her SATS went back up.



Now we just need GOD to please continue to heal her and keep her SATS and numbers where they should be so she doesn't have to be reintubated.



Right now she just has oxygen through the nose. She may have to go on CPAP, which is also through the nose, but a higher flow of oxygen. Her blood gases are good, but we need to pray those stay good too.



If ALL goes well tonight, we will be able to hold her later and they will start her back on breast milk around midnight. I think this will help her feel strong again. She has been off since midnight last night.



I thank God for healing her this far and pray that he continues to heal her and give her a complete healing real soon. I know between God and ALL your prayers this is why she has done soooo well this far. Your conitnued prayers are GREATLY appreciated.



Please God continue to heal our baby Andie and watch over our boys, girls, and grandkids, too. Amen





I also want to thank Gram again for flying out and playing mom/grandma for me. She has been great! I don't think we are going to let her go back to TN. I know she has stayed with me a couple of nights and I sweat her out of the room and the bells don't let her sleep. She also sits with us and supports us through out the day. But she has been a trooper.

Thanks Mom. We Love You.



Thanks to Grandma for being with us everyday and being such a great support system.

Thanks for ALL the snacks and sitting with Andie so we can go have lunch.

Your awesome. We love you.

Quick Update!

Just a very quick request for you all to pray specifically for Andie to do well as they put her on the CPAP to transition her off the ventilator!

I may even have this a lil' wonky. Brooke & I spoke briefly and this is what I understood.

Thank you for your continued prayers~


Kelly

Sunday Update

Sunday Afternoon:
It's just Andie and I today she is taking a nap and I'm cleaning our house. (Our Hospital House). I change our bedding, wipe everything with these great disinfecting wipes the hospital has and just organize all our stuff. It keeps me busy for a while. It kind of makes me feel like Andie and I are at home.

God willing, we will be soon. I will send a picture later of our hospital house. I need Daddy to re charge my battery.

Sunday's Plan of Acton: We are down to 2 on the Flolan. Remember the Flolan is another one of the drugs that helps the Pulmonary Hyper Tension. So going from 2-0 with the Flolan is like going from 5-0 with the Nitric. As you probably guessed my stomach is doing great. Hah!

We are going to continue lowering the Fentanyl and keep giving her the Methadone so it helps with her with having any withdrawls. She is still eating through the tube and is now getting 14 ccs (almost a half an ounce) an hour. She will continue with the Viagra and is almost to her theraputic dose. She will probably go home with this.

I pray to God we can get her Flolan down without any set backs. She has done such a great job. I know God and ALL of your continued prayers are helping her get through ALL of this.

I can't thank you ALL enough for ALL your continued prayers. As we can tell they are working. Your continued prayers are greatly appreciated.
All Our Love,

Andie & Her Family





I know Daddy is feeling a little neglected from mommy lately. Please know I love you very much. I appreciate All you do and are doing for All of us. I know my mind is always in hospital mode but please understand its where it has to be right now. I love you more now than I ever have. We both have really been each others rock and we can't forget those little hugs and kisses go a long way. I know it has been sooo rush rush that we have kind of neglected the little things with and for each other. Let's make a point not to forget. You are my soul mate, my husband, my babies daddy and most of all my best friend. Lets not forget all of this in this trying time. We need to continue to be each others rock. Not just for us, but for Andie and the boys. I love you and appreciate you more than ever. You're Awesome.

I love you,
Your soul mate
XOXOXOXOXOXOXOXOXOXO

Saturday Afternoon Update! *UPDATED*

From Auntie Kelly: In my effort to keep this blog updated, I failed to copy the whole e-mail that Brooke sent me earlier! OOPS! So, at the end of this post is the rest of the 'shout-outs' that I was supposed to include. But, most importantly, I forgot to say......

HAPPY BIRTHDAY BROOKE!

And if I was there I'd give ya 37 birthday spankins', cuz I am bigger than you & it's time for the little (as in younger) sister to pay back ;O) Love you!

Sorry this is sooo late.

I took Boston to get T-Ball pictures this am and then he had to go get his catchers equipment. He was so excited. I think he has enough protection from his catchers gear to protect him from his brothers or sister beating him up.
I would like to ask for a prayer to help the boys deal with the situation with their sister and me being gone ALL the time. God Bless Them!!!! Its tough for them too.

Our plan for today is to keep weaning her Flolan by 1 every 12 hours until she gets to 2. If she has no set backs, she should be at 2 by early am.

We are now weaning her from the Fentanyl so now they are giving her Methadone. I guess they do this so they don't get too adgitated during weaning then all her Sats could drop. Basically they have withdrawls from being on the Narcotics sooo long.

She will remain on auto mode with the ventilator again unless she has any set backs. God willing she will not. I guess when some of the kids have withdrawls its pretty sad. They can cry, vomit, etc. Again I hope God helps her through this one too.

She cried last night, and it broke my heart. You can see her but cannot hear her. Then she had a big tear in her eye. We gave her some Tylenol thinking she might be in pain because they pulled her pace maker wires out yesterday and Alex our nurse said they can have some pain from that. They just pull them right out.

She then held mine and Alex's finger and we patted her tummy to sleep. It worked. God Bless Her Little Heart.

These next few days are going to be nerve wracking for me. Your continued prayers are sooo greatly appreciated.

All Our Love,

The Paulus Family



I want to send a special thank you to Ryan, Danyele, Paige, Brooke, Jada, & Sofie for the beautiful card. You truly did brighten up our day hearing from you. I'm amazed at how much I feel like I know you guys even though we have never met or talked to each other before. We greatly appreciate all the prayers you are giving our baby Andie. I hope to meet or talk to you someday soon. Your girls are absolutely beautiful. Andie is my first girl and I can't wait to dress her and do ALL the girlie things. You ALL truly are a blessing in our lives. Thanks for all your support and continued prayers.

Love,
Baby Andie, Her Mommy & Daddy



Thanks to Tim & Jan for the lovely card. We are very greatful to have friends like you in our family. I know I have never personally met you, but my mom & Brogan absolutely adore you both.We greatly appreciate all your positve thoughts and prayers. Hope to meet you someday soon.

Love,
Baby Andie, Her Mommy, & Daddy





I also want to thank Quinn in Eric's class for sending us the most adorable card he made. That was soooo thoughtful for you to do that for Baby Andie. I can't wait for her to meet you. See you soon.

Love,
The Paulus Family





Cindy (Las Brisas Secratary),

You have been such a wonderful support system during my preganacy and now. You have such a caring heart. I love the beautiful card. It said the most beautiful things. It really meant the world to me to get that from you. When I was leaving the school the other night, you made a point to catch me and give me a hug and some words of encouragement. That is sooo what I needed. Please know you are very special to me and our family. I can't wait for Andie to meet you. I will talk to you soon.

Love,
Brooke

Saturday....almost afternoon!

Hello!

Auntie Kelly again! (Long time, no talk!)

I just wanted to give a quick update. I don't know many details, other than Andie's stat's have remained stable. And her Flolan is at 5.

Duane & Brooke went home to take the boys to practice, while Grandma Kim stayed with Andie.

My mom told me that Brooke woke up in the middle of the night & Andie was sucking on her finger! SO sweet!

Grandma didn't sit in on rounds, so as soon as Brooke gets back to the hospital, I will have her give us more specifics!

God is good....all the time.

Friday Update after Rounds!

Here is our plan of action of the day:

We are on auto mode on the ventilator! What that does is it makes her breathe on her own and if she forgets, it alarms and gives her 8 seconds then breaths for her.

Also, we are going to lower the Flolan slowly from 8 to I don't know to what and how fast.

As you can tell my insides are a mess. I'm soooo nervous but the doctors seem pretty confident that she is going to handle ALL of this pretty well.

I pray she does. She has not alarmed in a few minutes, so she must be doing it right.

Your continued prayers are greatly appreciated. These next few days are going to be nerve wracking.

I know she is in God's hands and I feel confident He will get her through this.
I know He has gotten her this far and I feel He will continue to get her through this too!

All of your prayers have helped her too. We thank you ALL so very much for this.

I will update later tonight.

Love,
Brooke

Friday Morning-UPDATED WITH PIC

Praise God!!!!!!!!!

We turned off the Nitric last night, and she has been staying from 95-100 on her SATS.

I have been a nervous wreck the WHOLE night. My stomach is not handling this well. I think my nerves are shot.

The important thing here is she is doing great!!!!!!!!!

There is a chance that the Pulmonary Hyper Tension could take over again and she could have to go back on the Nitric. Please God do not let this happen to her she has been sooooo strong and has come sooooo far.

She is ready to keep healing so she can go home soon.

We have not done the rounds yet for today. The polmonologist came in and said "There is something missing in here" (her Nitric machine) he said this is great. He is the one who told us about the Hyper Puliminary Tension coming back. Again one of those ups and downs.

I just pray its gone forever. I will update after round.

Your continued prayers are soooo greatly appreciated.

All Our Love,
Daddy, Mommy, and Andie

Baby Lewis next to us is doing wonderful after his surgery and so is Baby Ethan.
I have not heard about Baby Madeline in a couple of days.
Praise God Baby Scarlett is going home today. She just had surgery last week.

Please continue to pray for ALL the sick babies on our floor and ALL the hurt or sick babies and children in the world.
They sooo do not deserve any of this. God Bless to them and you ALL.

Love,
Brooke

UPDATE #3

We just did rounds.

Here is our plan of action today. We are going to keep trying to wean her from the Nitric. They warned me again about the 5-0 range and the set backs that can happen.

That's all we are doing today.

They are going to keep increasing her breast milk up one cc every hour. She is now at 7cc's.

They also told us her lungs look like they have some edema (fluid) in them.

Not infectious so far. We will wait and see how she is tolerating everything before we do any more testing. It may clear up on its own (God willing it will) or it could be something else.

See I'm up then they always throw something else at us.

Ok, so she needs to not have any set backs from her weaning of her meds, the edema needs to clear up, her lactate needs to stay down, her blood oxygen needs to continue to go up, she needs to stay clear of infection and any virus, her blood pressure needs to stay good.

We just need to pray for her full healing, even if its slowly but surely.

All your continued prayers are GREATLY appreciated.



All Our Love,

The Paulus Family

I CAN DO ALL THINGS THROUGH CHRIST THAT STRENGTHENS ME. PHIL 4:13

THURSDAY UPDATE#2

The pulmonologist just came in and told us that she is looking better, but we are not out of the woods yet.

He said a lot of times in Critical Care Medicine there are ALWAYS set backs.
Of course that always makes me feel uneasy inside.

Lets just pray our girl shows her stuff and proves them wrong.!!!!!!!!!!!!!!


Go Andie Go!!!!!!!!!!!


We still have not done rounds yet, but I will let you know ASAP what the plan is for today.

He did remind us that 5-0 is crucial. Please pray for our girl.

He also told us how we can tell she is doing better is by seeing machines go bye bye.
Hopefully we will start seeing this soon.

Andie's Mommy & Daddy

Thursday morning~

Another great day!!!!!!!!

As of this morning her Nitric is down to 5. Remember 5-0 is the time they would show a reaction if they were going too. So of course my insides feel like a pretzel. My stomach is sooo twisted.

Then on top of it we have a Respiratory Therapist we have never had before. Yes, that makes me nervous too.

We got some sleep last night. They have not done rounds yet. As soon as they do I will update again.

Thanks again for your continued prayers.
They are working.
Lets please continue them.

Love to all,

The Paulus Family

Wednesday Evening.

Update: Brooke asked me to change this picture back to color so you can see Andie's beautiful color!!

We have had a really good day. They started taking her Nitric down every two hours by 2. She was at 20 when we started. She is now at 12. They will continue this through the night until she gets to 5. Then they will go by ones. They say that if people are going to have a problem its usually from 5 to 1. Lets pray she does marvelous with this.



Praise God!!! She is such a trooper.



She has slept through most of the day. She will open her eyes and look at us for a few minutes and go back to sleep. Her blood gas tests keep improving. Again, let's pray she continues to keep getting better.



I told her again today that she has soooo many people praying for her. I keep telling she needs to be strong and God will help her get through this. I again thank ALL of you for keeping her in your thoughts and prayers.



Please pray for ALL the sick babies and kids in this world. There are SOOOOOOOOO many of them and none of them deserve to go through this.



Baby Lewis on our floor just came out of surgery tonight, baby Ethan got his tube out today and seems to being doing well, baby Madeline got out of surgery and her family said her numbers looked great and baby Mark came in today and seems to be doing well. Praise God!!!!!!!!



Please pray for them and All the babies on our floor. Thank you again for your continued prayers.






All Our Love,



Andie's Mommy

Wednesday Morning.

We had kind of a long night last night. My little Angel loved to be around her Mommy last night. Of course I loved it, but I hated to see her upset. I just kept feeling if I could just hold her, she would have been fine. Ok, I would have been fine too. She got a little upset every time I walked away from rubbing her head.As much as I am against the extra meds I asked the nurse to give her some because she actually started to cry. Do you know how hard it is to see your babay cry but you can't hear it because she has a tube down her throat. Finally I put a chair next to her bed and rubbed her head until we both fell asleep on her bed. Then around 1 am she was out and we both went to sleep.

We had a different nurse last night, so of course I was little on edge. She did a good job, but she had to change out her lines which makes me SUPER uncomfortable. Then one of her lines got a blood clot, and that was the one with her pain med. This is probably why she got soooo upset. She said it was like 10 minutes she did not get it. That was another reason for my decision on the meds. Needless to say, I was not super happy.Then her med lines beeped on and off most of the night.

As you can tell, I do have my favorite nurses. None of them are bad, just some make me more comfortable than others. Spoiled I guess.

We have not done rounds yet this am, but I asked the doctor to see her x-ray from this morning. Her lung looks a little better, so they want to lower the Nitric starting today. I called Daddy right away, because this makes me a nervous wreck. If it was me, I would give her lung one more day, I might suggest it during rounds. Needless to say I asked Duane to come asap so we can be here together.

Ok, we just did rounds, here is the update. We are going to put her tube a little further in her throat. They think it got moved a little. Then we are lowering her oxygen to 50% until noon. If all goes well, we will start lowering the Nitric by noon. We are at 20 and we will lower by 2's every two hours until she reaches 5. Again, as long as she tolerates it.

My stomach is in knots and I'm a nervous wreck. She just needs tons of continued prayers. You All have been so wondeful about this. I can't thank everyone enough for all the positive energy and prayers. I wish I could thank you all in person someday. Maybe I can!!!!! I guess I better shower and get ready for our big day.

Your continued prayers are greatly appreciated!!!!!!!!!!

All Our Love,
The Paulus Family


Last night the boys, Duane and I went to dinner it was fun. They gave me my birthday present early. I got a beautiful Tennis Bracelet. I was sooo surprised. And yes, He went to Jared!!!! I have always wanted to say that and now I can. Hee! Hee! Thank you so much guys I love it and I love and miss you all VERY much. Again my wonderdul husband is ALWAYS thinking of me. I love him very much. Thanks babe!!!!!!!!XoXoXoXoXo

It is another big day today. Happy 50th Anniversary to Duane's Mom and Dad, George and Okshan Paulus. How Awesome is that. I wish you guys many more years together. We love you both very much. XOXOXOXOXO

And Happy belated birthday to Andie's Great Grandpa Ledgewood. He celebrated his 82nd birthday yesterday! Love you Grandpa, wish we could be there!

Tuesday Evening-With Pictures!

Oh my, have you seen anything sweeter?!


Now for the afternoon update:

We spoke to the doctors this am and the plan is to lower her Flolan to 8 by tonight and then we are going to sit tight until her lung is back to normal. Her right upper lobe of her lung is still collapsed. Then once her lung looks better, we will slowly wean her off the Nitrate. I mean slowly to see how she tolerates it.She is now getting 4 cc's an hour of breast milk. We saw the Polmonologist this afternoon again and he agrees with the plan of action. We want to go slow so she does not go backwards. Fine with us. We can handle baby steps. She got her cathiter out today, so she is going potty in her big girl pants again. We now have a mobile hanging from her bed and she seems to totally focus on that now. Oh yeah, She has pooped today too!!!! They gave her aspirin in her bottom to help her poop. Of all the tape pulling, suctioning, surgery, x-rays, etc. The aspirin up the bottom actually made her grimmace and kind of cry. It broke my heart. She is soooo beautiful. I keep giving her my pep talks, I know her daddy talked to her today too. I again want to thank everyone for all your prayers. Your continued prayers are greatly appreciated.

All Our Love,

Andie, Her Mommy & Daddy


I want to thank my wonderful husband for coming here during the day and going home to play dad at night. Your doing a great job. I know its hard, but thank you soooo much. Tonight we are going to have dinner with the boys again. They are going to pick me up and we are going to the Spaghetti Factory for dinner. I'm glad I get to a least see them for awhile. I miss them ALL very much. They are doing a great job of coping with the circumstances. I love you all very much

Love,
Mommy
XOXOXOXOXO





Holding onto her mommy!



Hangin' out with her bunny!




No, this is not Andie's car. Her daddy promised her a pony! Well, more like a Mustang GT! *wink* Brooke sent me the pics and this one was in the e-mail attachment. OOPS! I just had to laugh because this is SO Andie's oldest brother Brogan. He LOVES cars (like his Poppa!) and he will be tickled to see this on here!

O sing to the LORD a new song, For He has done wonderful things, His right hand and His holy arm have gained the victory for Him.Psalm 98:1

Tuesday Morning!

Good Morning To You All,

I guess I get to give you the update this morning since Daddy wasn't here last night.

Praise God!!!! We had a wonderful night.

They have turned off the Epi and the Dopamine and her Flolan is down to 10. They will continue lowering her Flolan down to an 8 by tonight and as long as she keeps tolerating it, they will then start lowering her Nitric. Her Sats have been in the 90-100% it seem like everytime I looked up at it,it was 98 - 100%. Again, Praise God!!!!

As of last night and this morning her lactate is totally in the normal range and her blood oxygen level is 80%. I'm sooooo happy. I just pray we continue to make progress!!!!

I keep giving her my little pep talks and telling her how well she is doing,that she needs to keep fighting and stay strong, how many people she has on her side praying and pulling for her, how beautiful she is, how much we all love her and that she is doing such a great job. Keep fighting baby girl.

I want to thank all of you for following our blog everyday and most of all for all of your prayers.I just told my sister last night, I know she is getting better because of God and all of the prayers she is recieving from everyone.
Everyone keeps asking me what they can do for us and I just say please pray for her. Thats huge for her!!!!!

Thanks to Gram for staying at the hospital last night, I know she didn't get much sleep. She said she woke-up at every beep. I told her you learn the good beeps from the bad beeps. Thank God we had good beeps last night.

Well sorry I'm not a journalist. I will keep you up whats going on through out the day. Your continued prayers are greatly appreciated.

Love to ALL of you.

Andie's Mommy

Monday evening update.

Auntie Kelly again...

The grandmas have been sitting with Andie this evening! What a treat I'm sure!

Especially since they were there when one of the doctors came in & reported some good news!

Andie's lactate level dropped all the way to .8 and her saturation levels have remained in the high 90's to even 100% for most of the day!

Brooke & Duane went home today to be with the boys for a bit. The boys were so excited. Especially Boston who is 5. Tonight there was a pajama party at the library. Brooke said "Come on Boston, let's go to the library." He replied "YOU'RE taking me?!" Yes, he misses his momma!

Duane will send a more detail update soon. I just wanted to give this great news.

I praise the Lord for His hand of protection all over this sweet lil' bean!

Blessings~

Monday Morning

The night went well for Andie. Not only did they stop her epinephrine and reduced her flolan - she maintained her stats. So last night she took food, got off one med, and reduced another. So all in all she had a good night.

For today they will reduce her flolan extremely slow and increase her food intake 1cc an hour. So they just doubled her milk intake, so she's at 2 cc/hr. And in an hour she'll go to 3cc/hr, and so forth.

Looking at the monitor way to much, but her blood/oxygen level has remained in the 90% range and hitting 100% several times. They have a pulmonaryologist now in the loop for a new set of eyes and someone who is specialized in pulmonary hypertension. However they did notice her lung that was collapsing is still collapsed but they're monitoring it.

Things look to be improving, we just have to keep the hope that she'll keep going in this direction.

Duane

Update from Sunday night.

Today seemed to pick up a little better for Andie. Nothing was changed with her medications and her vitals remained strong. Mainly we were watching her lactate readings and it showed it dropping throughout the day. Her SAT averaged in the 90's most of the day. Right where we want that to be. We really need it to be at 100% and stay there. These episodes are not uncommon, but every time we think she's turned the corner she lapses back. One of these times I know she'll prove us wrong and get around the corner.

I got to go home late this afternoon. I picked up Eric and took him home, then I grabbed Brooke's mom, Brogan and Boston and took them to Chili's. I wanted to let them know that they are not forgotten and we miss them and miss being together. They had a good time and watching Boston and Eric get back together for the second time in over 10 days was funny to watch. They missed each other for sure. The boys asked questions about Andie and really want their sister to come home. This is hard on them too and we can't lose sight on their feelings during this time as well. We know they'll get through this, but we need to sensitive to their needs too.

Andie spent most of the day with her eyes wide open looking around like she's bored and ready to come home. Brooke spent a lot of time talking and giving her kisses today. Andie truly enjoys when we spend time with her. She knows when her mommy is talking to her. It just seemed today that even during times of sedation she would still stay awake, even during her respiratory treatments. When they suction her lungs, it's not an enjoyable thing to watch. I'm sure she doesn't enjoy them either. But regardless she just looks around and is very alert. Now even though she's alert and looking around, we know she's feeling no pain with all the medications they have her on.

Her puffiness has come down drastically especially in her face. She's starting to look like the little girl we took home for those 19 hours after she was born. Lasix is helping her with removing her fluids. We were scared on Thursday because on that day she had very minimal urine - I mean none. It was alarming to everyone because she was still taking in her fluids through her IV. But since Friday that has not been a problem at all. Also with her puffiness coming down, her 4 inch scar on her chest is more apparent. When i look at it I feel sorry for her for what she's going through. I would do anything to take this all away from her. But without the surgery she had, she wouldn't be here now.

The best news of the day is she actually got to take in some food. Now since this all has started Andie was not allowed any food. Of course we know food for a newborn is mother's milk. Brooke has been pumping her milk since this ordeal started and the nurses have been saving the milk for that special occasion. So today they started her on her mother's milk at 1 CC an hour. So if you think about it she's receiving less than 1/4 a teaspoon of milk per hour. I know it doesn't seem like much, but its the only way the doctors can find out if she can tolerate food or to see if she would have any reactions with the food. You would not want to vomit while on a breathing machine. So she's feeding on mother's milk and hopefully we'll be able to turn that up quickly. And lets hope that her mother's milk will help her heal more quickly.

Duane

Sunday Morning.

Auntie Kelly here. I am sorry for not getting this to you sooner.

We had church this morning, then a basketball game.
And of course, it was our teams' turn for concessions.

Anyway here is Duane's forward from this morning. I wish it were better news.
Please continue lifting Andie in prayer.

God Bless.



Taking Andie off of the epinephrine apparently wasn't in her best interest. Her blood pressure started to drop as well as her saturation. Putting her back on the epinephrine would bring up her blood pressure and her saturation as well - in thinking that is. But it hasn't worked, yet. But this mornings chest xray shows that the right upper lobe of her lug has started to collapse again. Not as bad as it was the on Friday, but worse than yesterday. This may be one reason her saturation has been reduced as well. The respiratory tech will come in and make some adjustments to her breathing and get her lung pumped back up. There is room to raise her Flolan, but this is where 1 step forward 2 steps backwards goes into effect. Hopefully today she'll turn this around to numbers we had yesterday.

She continues to look around and make eye contact with us, but we also notice that she is more agitated with her breathing tube. She gums it and suckles it, but mostly gags on it. We can hear her cough with it in and it breaks our hearts. But just making the eye contact we can tell she likes seeing us. especially mommy.

For today we are hoping that she can improve to where she was yesterday back into the 90's for her saturation. As she improves I'll keep you posted. Today is a week here in St. Joseph. Thursday was her one week birthday. She's been here 10 days and 9 of them in the hospital. It's time that she improves and gets better so we can take her home.

Duane