Saturday, February 28, 2009
With the waiting of her lactate to decrease the doctors decided to stop weening her from her meds and put her in a holding pattern. But since we got the latest test back they finished Andie off of the epinephrine - she's free and weened of it. And her stats are still standing steady. I find myself looking at her blood/oxygen reading the most frequent and noticing it's staying in the mid 90% range.
Tonight she'll start the process of weening off of dopamine. This should help with the blood pressure but who knows what else it'll affect. The idea is we don't disturb her vitals while weening. After dopamine we'll start Flolan and Nitric from the breathing machine next. Once they have these completed the rest will follow.
We are at a very crucial point in her recovery. Playing around with too much can put Andie into a tailspin. With all the progress we've made, please understand that we do not want to go there. She has been a real strong trooper and maintaining her strength and pulling through the hand she has been dealt. But we are not out nor are we close to being out of woods. Believe it or not there is a method to their madness to this weening process.
She has been as alert as she could be today. She is still under some pain medication (Fentenal) which causes some mild sedation as well. But she has flashed her big baby blues several times at her mommy and I. So we've enjoyed her a lot more today.
We continue to get strong support from our family and friends. You just cant understand how it makes Brooke and I feel whenever we get calls or a drop in to check in on us. It means the world to us. Our folks have been great with helping us out with the kids and supporting us at the hospital. And our friends have been outstanding. It's truly amazes us to see how our friends have come to our rescue. We love you all. And Marcus - thanks for mowing my grass and fixing my sprinkler line that was broke. I had no idea I had a broke line. I totally appreciate it.
Thank you to all for everything you do for us.
I woke Brooke up so she could spend some time with Andie as well. So we played with her as much as we could. At this point everything is looking great. Her stats are where they need to be, the epinephrine is almost at zero. One more cycle and they should have been completed with it, but with they are going to hold off on it for right now. See below.
Now for the bad news. Her blood work is showing higher levels of lactate. The doctors are baffled at why it is, because she looks so good - her stats, her SAT, her skin, color, everything. So they're not sure what's going on and are going to look into this. They'll check her liver enzymes and check her blood gas work in an hour to see if it elevates any further. And until they figure out what's going on they are going to stop weening her from her meds.
So we are so excited about the good news with her stability and stats and her responsiveness. Now we just have to get over this lactate issue. The doctors are confused because they usually don't see this when everything else is looking so good. But then again they keep telling us that they've never seen a Coarc and PPHN at the same time. So we don't expect anything less from Andie - being different from everyone else up here.
She is giving them some new experiences.
Kelly here. I googled 'high lactate levels'.
It frightened me. From what I understand it has something to do with liver failure.
I have not spoke with Duane or Brooke yet, so I may be off base. I am praying specifically for her liver anyway.
We have seen Your Mighty Hand all over this sweet baby and her recovery. We trust that You will protect Andie's liver while she continues to keep her stats up & HEAL. Thank you for blessing this family with her. Thank you for showing Your love through the people you have sent to pray, encourage, lend a shoulder, and reach out.
Please continue to strengthen Duane & Brooke, their marriage & their boys.
In Jesus's sweet precious Name~
He wheels the new tree of life over to Andie's bed, which he now has her propped up by tilting her bed, and started to hook all the new hoses to her little limbs. While Alex was doing his work, he and I discussed the goal for Andie tonight on his shift.
At this point Andie is looking very stable. They have increased her Flolan to 15 from 10 to help her loosen up her vessels in her lungs. Besides that, she's looking the best she has since we brought her home. She's still swollen and puffy looking, blood in certain areas where they have replaced needles or added something, but mainly she looks so small and peaceful laying on a soft pink and brown blanket.
Her stats look really good. Her SAT has been in the mid 80% to the mid 90% range. I even saw it go to 98 and hold there for some time tonight. Her goals for tonight are to remain stable and start weening from the epinephrine she's on. The same medication used for Bee Sting allergies. Epinephrine is used to boost blood pressure. If you ever see Brooke - ask her about the time she stuck herself with Boston's EPI pen. Full adrenaline. The funny thing about epinephrine is one of the side effects is Pulmany Hypertension.
When I heard this, I started to scratch my head wondering why they would be giving her this if we're trying to cure her of it. I guess it's one of those things you just don't ask. But we did anyway. They used it to boost her blood pressure from the side effect of the Flolan which slow downs blood pressure. So tonight they are going to ween her from the epinephrine over the next 10 hours. So they'll take it down and watch her. If she does well, then they'll do it again in 2 hours, and so forth until it's all out of her system.
So we are praying that Andie will be able to be weened from the epinephrine, keep her stats the same, and maybe increase her SAT.
On another note, they are watching Andie's right lung for they believe it is starting to collapse. A normal event from PPHN and laying flat on your back. They have moved her around side to side. A shift change later and Alex is reporting that her lung sounds like it has inflated back, but we're keeping an ear on it to make sure it stays inflated.
It's almost 1:00 AM and the respiratory tech came to suction Andie as I lay here writing an update. As she completed her work I ask her if she's all done and all is ok. She replies yes and says "her eyes are wide open, she's awake". Brooke wakes up from a dead sleep and both her and I dart over to Andie's side to talk to her. What a joy it is to look at her and have her respond with her eyes in the direction of our voice. She looks around as we make baby talk to her and enjoying the time we have with her. She has her breathing tube still placed in her mouth running down her throat inflating her lungs. She has a drain tube that enters her left nostril and runs to her stomach. But even with all the tubes in and out of her, she still looks at us with love and anticipation of us able to hold her.
We continue to talk and touch her for about 30 minutes watching her stats. They are still strong. Her SAT is in the low 90's and holding. Her vein pressure is rising while her stress is staying down. Even after her suction treatment from the respiratory tech, she didn't get stressed out and lower her stats. Maybe we got the formula down now., but in reality we're trying to keep our hopes realistic and optimistic. And even with Andie sucking on her breathing tube, she looks at us with the thumbs up sign. We are keeping our fingers crossed.
Lets hope tht Saturday brings us a day of weening Andie successfully off another medication or two and keeping her stats where they're supposed to be, so we can start preparing on getting her over the hump and able to return her home quickly.
Friday, February 27, 2009
She has also been reduced on her sedatives. But the biggest reduction is with the Flolan. It went from 30 this morning down to 10. Now with this done we are watching her monitor like it's Superbowl Sunday. Watching every up and down of each specific monitoring point. I've got my back to it because I just can't handle the pressure. But Brooke and my mom are watching it.
The reason why they are doing this is to see if she has started to turn the corner and is able to start to be more alert without too much stress. Her SAT has gone to 79 which is not the direction we want. But the doctor is trying to get her body to adjust and start working on her own. Like I said, we are watching the monitor too much - now it's down to 74. Her other signs are holding well, but we just need her to be strong with these adjustments.
On a good note - being reduced on the sedative she has opened her eyes and Brooke and I got a chance to have her look at us and we could talk to her with looking at us eye to eye.
This is what we have for right now. I'll try to post some more updates later this evening.
Brooke and I would like to thank the following:
First we want to thank Kelly for making this blog and passing our information out to everyone.
Our boys - Brogan, Eric and Boston for being understanding and strong while their mommy and daddy are gone at the hospital with Andie.
For everyone helping us with our boys - Fran, Carl, Jimmy, Jack, Caitlin and Shane.
We want to thank Stephen Johnson (Eric's brother) and Mrs Pazak's class at Foothills Elementary for writing get well cards for Andie. We were so shocked to see 25 or so get well cards written and drawn from an entire 6th grade class. The thoughtfulness of this was so overwhelming.
We thank all our mothers for staying with us everyday in the hospital for support. And for Brooke's mom for flying out to help take care of the boys while we are at the hospital staying and sleeping here.
Thank you Papa Bill (Brooke's Dad) & Papa George (Duane's Dad) for being here at the hospital & offering support too.
Thanks to our good friends who stopped by to see us at the hospital. To show up and show their true friendship and being a shoulder to vent on, cry on and get a joke out every once in awhile. For friends we've not seen or heard of in years for stopping by or calling us.
We thank our doctors - Dr Rhee, Dr Willis, Dr Underwood, Dr Nigro (who performed the surgery), the nurses - Sally, Kathleen, Maria, Kim, Nicole, Arva. You all have been so great. I know we are on you like white on rice with questions - so we thank you for your patience in dealing with us and taking the time to explain things more than twice because we're so emotional.
The staff at Thunderbird Hospital - Heather - your strength got Brooke through the first couple hours of this ordeal, Tiffany - for getting Brooke through that first night, and Melody - for popping your head in to check in on us and helping out Tiffany.
And thanks to Kim the Neonatologist for her due diligence and dedication in the first 12 hours of Andie at Thunderbird.
The teachers and staff at Las Brisas who kept our boys sane and keeping us in your thoughts.
We thank our neighbors who have helped us out with our dogs, picking up the paper and just taken care of things around the house. For the phone calls, tears shared, offered dinners and everything you guys do for us - you're the best neighbors we could ever hope to have.
Thank you McKay and Hans for stopping by and giving a prayer for Andie, Thank you Bishop Day for stopping by.
Thank you to people we've never met for stopping by and asking us if there's anything they can do for us.
All my co-workers who have been supportive and sending me your thoughts and prayers. And for helping me with my accounts and customers.
For my customers that have called me and/or emailed me with your thoughts of concern.
To everyone else that I've forgot to mention - thanks to you too.
We appreciate everything you do for us.
Duane & Brooke
And a shout out to Danyele at A Thorn Among Roses for creating a button for Andies's blog. So sweet. Thank you!
Because it has been a crazy couple of days. I asked Duane to put together more of an explanation of what's going on. I am in Tennessee & I'm watching my mom's business while she is in Phoenix being supportive & caring for Andie's brothers! And because my mom's business has me on the phone A LOT, our communication lacks at times. And when we do talk it goes something like this:
Me: "Hi. How's the baby?"
Mom: "She's doing good."
Me: "Okay good. The other line is ringing!"
Mom: "Okay, we'll talk later"
See, short & sweet. As long as I hear she is doing good, that is sweet. I am so sorry for being selfish with the news. Between Duane & I we vow to keep better updates.
So now that we got all that taken care of, for why you are really here....
The last couple of days have been up and down. It seems we would get Andie's SAT (Blood/Oxygen Saturation) to the level we want - 85 - 95% but then her blood pressure would drop and her heart rate would rise. So you can see where the frustration is.
On Wednesday morning they were talking about putting Andie on the ECMO because of her SAT. But the doctors increased her Flolane (a med that opens up her lung vessels) and all of a sudden she started to show quick improvements. She started in the low 70%, down to the low 60% SAT range. But after the increase in med she climbed up to the range we want her at.
Some are asking what the problem actually is, so I'll do the best I can.
Andie came in with 2 problems - the first was the coarctation of the aorta and the second is prenatal pulmonary hypertension in newborns. (PPHN). PPHN is where the blood vessels in the lungs are tight and constricting not allowing blood to oxygenate. The Coarc was repaired when she went in for emergency surgery on Monday. They were planning on putting Andie on the ECMO at that time as well. After surgery they said the repair for the Coarc was successful and didn't feel the need to put her on the ECMO because she was stable even after the surgery.
Since then we've been up and down with the stats - for her blood pressure, SAT, heart rate, and vein pressure. The doctors have been a symphony conductor of medicines. They try this, try that, mix this with that, don't mix this with that, this needs to be in an IV by itself, this one is ok to be mixed, blah, blah, blah.... Totally unbelievable. If you look at the pumps she has 13 pumps pumping some kind of medication. We call the rack of pumps - the tree of life.
Reminds me of the staging lights at a dragway.
Andie had a good night last night. Basically she's had good nights the last two nights. I've learned to look at her progress in 24 hour blocks. She looked better last night than the night before. And better the night before, than the night before that. If we looked at her any other way OR looked at her monitor (which shows all her stats) all the time - we would drive ourselves crazy. The numbers will go south in a New York minute and she'll recover back to normal in a matter of a few. But those few seem to be an eternity.
Our goal is to maintain her SAT and keeping her heart rate and blood pressure where they need to be. They are constantly administrating different medications. One of the medications they give her is Viagra. Apparently Viagra has been around for sometime for pulmonary reasons and one of the side effects was a...... you know.... an erection. So they spun a marketing spin on it and named it Viagra and sold it to millions of men.
To let you know where she is at this moment - she's has been pretty stable since after the ECMO scare on Wednesday. After the meds she shot up her SAT and they decreased her oxygen level down to 50% (she's still on a respirator where the machine is breathing for her). They check her blood every four hours for toxicity. They increased her respiratory and oxygen level (up to 65% now, she started at 100%) to push out the carbon monoxide. The last blood work showed improvements. This morning she started to go south again, but this time they wanted to remove her umbilical cord IV and put a new PIC in her groin area. When she was first admitted into the ER on Sunday they set up an IV in her umbilical cord. Apparently they can use the vessels in the umbilical cords for a week or so after birth. It's one of the best places to start an IV because the vessels are where they need to go.
So this morning the performed a small procedure to place the PIC. Brooke and I had to leave the room while the surgeon did the work. We thought it would be a good time to get a bite to eat and get out of the hospital. We went to First Watch which is a place the serves breakfast and lunch. We love that place, but we don't leave the hospital too much.
They are running the Flolane directly in the new IV and we think the short fall she had this morning was due to plumbing and they feel that this should work now. They also turned down her oxygen level to 52%. At this moment her SAT is at 82% - we want it to get back into the 90-95% range. Yesterday she didn't have any passing of urine, which was alarming to everyone as well. They gave her Lasix to help decrease her fluid levels and puffiness. This helped with Andie urinating. She is extremely puffy but has started to lots better with the flushing of fluids.
She is constantly getting x-ray'd for this or that and this morning she had another Echogram. The echogram showed her heart doing what it's supposed to and they checked the pressure in her lungs. So today should be a good indicator where she's going.
Andie will remain in ICU until we don't know. We keep optimistic on her developments, but sometimes our humanness comes out and we are just overwhelmed with emotions. This is the worst thing that Brooke and I have ever experienced. So if you have children, please give them a hug and be thankful that they are alive and healthy. So much is taken for granted until something like this happens to you.
I'll be more diligent in passing along information.
Thursday, February 26, 2009
Brooke said that she had a talk with Andie last night. She promised her lots of days snuggled in their jammies in bed, eating & watching TV!
HA....she had her at 'eat'.
Thank you doesn't seem enough for you continually checking in here, offering prayers & support for Andie & family. But since it's all we can do for now....THANK YOU, THANK YOU, THANK YOU.
Please pray that Andie will continue like this so she can heal. And then eventually wean off the medicine(s) and then GO HOME!
May The LORD make His face shine on you, And be gracious to you;
May The LORD lift up His countenance on you, And give you His peace.
Wednesday, February 25, 2009
They increased the medicine to open up her lungs and her stats went to 100%!
Praise the Lord!
Andie had opened her eyes, and the nurse told Brooke to look. By the time she got over to the bed her eyes were closed again. So Brooke whispered into her ear & she opened them again.
So precious, the bond of mother & child.
*please pray that her saturation levels stay up there, then the doctors will start weaning her off that medicine in the next couple days!
We've been bombarded with calls of concerns and support. We appreciate all the prayers and thoughts during this difficult time. I thought I would give you all an update of what's been happening - Andie has been here at St. Josephs CPTICU since Sunday.
This all started Saturday the day after we brought her home. Friday night she ate and slept like any other newborn. Saturday she started to become lethargic so we took her to the ER. I dropped her off at the front door then parked the car. As I came back to the ER and they escorted me back to their room a "Code Blue Room 11" came over the intercom. I knew that was Andie's room so I asked the guy who walked me back. He said it means heart stopped. I told him that's my little girls room and show me the way quickly.
As I got there there was 15 doctors, nurses, techs, etc working on her. I saw Brooke over on the side crying so I went to her and tried to grasp all what was going on.
After what seemed to be eternity they got her under control. Come find out she did not "code" but rather had a 56% oxygen saturation.
So after an lengthy time we got her moved upstairs. So at first they thought she had a virus - Group B Strep, Meningitis, Pneumonia, and RSV. All which is deadly. So after the 2 day mark what they noticed is her PDA (Patent Ductus Arteriosus) started to close her Aorta started to close as well. They call this Coarctation of the Arota.
So they wanted to get her stable so they could perform the open heart surgery. After this she was medivaced to St. Joseph's hospital. Where they have one of the best pediatric cardiac unit in the US.
Her vitals started to take a turn for the worse. Her blood/oxygen saturation would not increase. It would only stay in the 70 - 80% range. And you could see her lower extremities were not as pink as the rest of the body. So now she has PPHN (Persistent Pulmonary Hypertension of the Newborn). This mean her lung vessels are tight and cannot let blood transfer through them. So at this point they told us that they want to perform surgery right away (like within the hour) so they can put an ECMO on her (Extracorporeal membrane oxygenation) - a machine that bypasses the lungs to oxyngenate her blood. And also they would repair her Coarc of the arota.
We did not think she would make it out of this surgery. So we said our goodbyes to Andie.
What came to our surprise was our nurse came to the waiting room with a big smile on her face and said they're done with surgery and they did not put the ECMO on her but did correct her heart. They saw her stable and getting better right before the surgery.
So we thought this was great news. Even though they had to go through her chest to fix her heart - we didn't care. She's alive and getting better. Once the Arota is fixed - it's done. No chance for relapse basically.
You couldn't believe how we felt to think she was out of the woods and she's a little fighter. So now we are 2 days pass the surgery and she is taken a turn for the worse.
It appears her blood/oxygen saturation is in the low 70% range. Even though she was in the 90 - 95% after her surgery. We are all baffled on why she is. At this point they are giving her every medication possible to correct the vessels but it seems nothing is working.
The possibility of her going back to the OR to get the ECMO placed is pretty high now. The next few hours will tell a lot for us. But we are hoping that the meds will kick in and do their job and Andie will settle done and get better.
Last night she had to have a blood transfusion and several different medications. Nothing seems to work at this time. And the most important thing is we have to keep her calm and relaxed. She is sedated and the room is very calm. We are not allowed to talk to her or touch her. No stimulation is allowed at this time.
So you can imagine how well Brooke is taking this. We were lucky to touch and talk to her this morning. The nurse allowed us to do so during her assesment. It was such a treat to do this little feat. Just to be able to touch your child, a child that's less than a week old and going through what she's going through is a blessing by itself.
The light at the end of the tunnel is this is reversible and correctable. We are praying with all our heart that we can get her blood/oxygen saturation level back to her normal range and start working properly.
Please look at a web site Brooke's sister set up. It's a blog that Kelly updates on a regular basis. Go to andiegrace.blogspot.com to look at her updates. Sorry if this update is all over the board, but I'm doing the best that I can given the current circumstances. Thanks for all your supports and thoughts.
Andie is not holding her oxygen saturation level, even with the blood transfusion.
There is talk of the bypass.
They were waiting for the doctors to make their rounds. And when I know, I will update again.
Please God, give this baby the strength to keep fighting.
I'm sorry for not updating later yesterday. My brain is in a fog...
Andie has remained stable. Her stats fluctuate a bit, but for the most part she is doing good.
Brooke is more than exhausted (as of yesterday evening). Hopefully she was able to catch up on some sleep last night.
**Keep praying for her renewed strength.
Andie's daddy sent me a couple pictures yesterday.
Thank you again for checking in and keeping Andie & her family in your prayers.
She has a long road ahead, but it's sweeter knowing that she is guided along that road cradled in the arms of Jesus!
Tuesday, February 24, 2009
(I have to admit, I always say a quick prayer for good news when I see it is someone from Arizona calling!)
And thankfully, it was good news...
Andie has remained stable throughout the night. She still has fluid in her lungs, but it is just a matter of her heart healing and pumping properly to get more oxygen into them.
More specific prayer requests....
*That Andie would continue healing from the surgery, and stay free from infection & any kind of illness.
*That her 'Pulmonary Hypertension' would subside.
*That she would remain comfortable & free from pain.
*That Duane & Brooke will remain strong, peaceful, & comforted during her healing process.
*For her big brothers while they are away from their parents & 'normal' routines.
*For continued wisdom upon the doctors & nurses while they care for her.
*All the sick babies. And their parents having to stay strong while their children are ill.
I know it seems like a lot, but thankfully it is never too much for God.
Thank you again for your love & support. We don't ever want to take any of it for granted. It is very much a blessing.
Now glory be to God! By his mighty power at work within us, he is able to accomplish infinitely more than we would ever dare to ask or hope.
Monday, February 23, 2009
I just spoke with Brooke, Andie has made it through the surgery without needing the by-pass machine for her lungs!
Thank you Jesus!!
As soon as they made the repair to her heart, her stats came up! YAY!
The next 24 hours are still very critical. We are trusting that the Almighty Physician will continue to have Andie in His MIGHTY hands!
Thank you so much for all the prayers. We are so grateful for the love that has been showered upon our whole family, especially Andie Grace!
Love to all.
Kelly & Family
With that they have decided to take her back for surgery right away.
PLEASE continue praying for the doctors & nurses. That the Lord will give them all the guidance & wisdom for what is best for her. That Andie will have the strength to pull through the surgery at this time. The reason they were wanting to wait was to let her lungs heal.
Also, continue lifting up Duane & Brooke. I am overwhelmed at what my sister is enduring right now.
Thank you again.
The doctors gave her medicine for 'Pulmonary Hypertension'. Meaning that because her heart isn't functioning properly, it is causing her lungs to be sick as well. She has responded to it well.
Once they get her lungs stable then they will have the surgery.
Thanks again for your continued prayers & support. It means so much to Brooke, Duane & our entire family.
Sunday, February 22, 2009
I am her proud Auntie that has put this blog together to update friends & family of her diagnosis, surgical repair, and healing of her little heart.
Andersen (Andie) Grace Paulus was born on Thursday February 19, 2009 to proud parents Duane & Brooke.
She weighed in at a whopping 5 lbs & 7 oz! And was 19.5 inches long. (a string bean, for sure!)
After being home less than 24 hours (Saturday afternoon), Brooke & Duane realized that something just wasn't right. They were told by the doctor to take Andie straight to the ER. Once there, Brooke said that it was very crazy & overwhelming. They were told best & worse case scenarios. Scared is an understatement.
After many tests, the doctors were able to narrow the 'problem' to her heart. The pediatric cardiologist met with them today and told them of her diagnosis. She has 'coarctation of the aorta'. (Click on it for a link to more information.) We are very thankful that it is something that can be repaired. Though she will have to undergo surgery, we remain faithful that the Lord will watch over every moment and see her though it just fine. The surgery will happen within the next couple of days.
Please use the comments to let Duane, Brooke, Andie and her big brothers know that you are praying for them & thinking of them. I know that they will be immeasurably blessed by the support available here though this blog.
Thank you for your prayers.
In the grip of His grace,
(Auntie) Kelly :O)