Sunday, January 27, 2013

Thankful to Be Back Home

Sorry for such a delay in updates!  It is much harder to find time to do a blog post now that Aubree is basically back to her normal self of super active and not knocked out in the hospital bed on pain meds. :)

We are so very thankful, elated, and relieved to be home!  We had absolutely wonderful weather driving back home, and Aubree was a trooper the whole time.  We kept her on her Motrin schedule for pain, which seemed to manage it great.  Our house was spic and span thanks to my sweet sister Amber and friend Bailey who came and gave the house a good scrubdown before we got back.  Another sweet friend Sarah bought groceries to fill our pantry and fridge so that we would have some things to eat once we got home and not have to immediately go to the store.  Thank you all so much for making our homecoming stress free!  Amber also had a big pot of homemade vegetable beef soup warm and on the stove for us.  While the restaurant and convenience foods we ate while Aubree was in the hospital served their purpose, we were so happy to eat home cooked foods again after having to eat out so much. 

Speaking of food, Aubree has really taken to eating real food.  Anytime she sees us eating, she will fuss at us until she gets a bite.  She has had chicken and dumplings broth, noodles out of a pasta dish, tiny bits of steak, couscous, biscuits, cheese, homemade pizza crust, and frozen yogurt.  She is still loving Ritz crackers, apples, yogurt, baby cereal puffs, and some baby foods.  We are so thankful she likes eating real foods since bottles have never really been her favorite since she developed bad reflux (the reflux has been resolved for a while now). 

I would say Aubree is 95% back to her old self.  She is dancing to music that her toys play (this really is hilarious, and I have got to get it on video), jumping in her jumper, sitting up independently, and laughing at things she thinks are funny.  Last week on Friday, we discontinued all pain meds, and she is doing great.  All of her steri-strips came off after her first bath once she got home and her incision looks great.  It looks better that what I had anticipated.  Concerning feeding, Aubree probably takes about 1/2 or more of her bottles by mouth and the rest down the gtube.  Sometimes, she just wants real food and doesn't want the bottle.  Can't say I blame her! 

Aubree starts back up with PT this week, had her weekly weight checks and assessments from home health last week, and had a checkup with the pulmonologist.  The pulmonologist back home is wanting to be extra cautious about her not tiring out from a respiratory standpoint and wants her on cpap a little bit more and at a reduced pressure of 6 during the day than what we were discharged with.  It won't hurt anything, so we are fine with that for now. 

Also, we have asked you all to pray for Aubree's two Jeunes buddies who are her age, Madden and Will.  Madden, who had his VEPTR surgery around the time Aubree did, just had a successful extubation to cpap this week.  Praise the Lord for this!  Madden has struggled with a cold and a few other issues post op, and this extubation is a huge step in the right direction for him to get to go home to Florida.  I know him and his mom are ready to be back home because they have been at CHOP or Ronald McDonald House since October.  Please keep them in your prayers!  Will, who came for evaluation for VEPTR, got a good report of wait and reevaluate.  He is currently compensating for his smaller chest, so the doctors are going to see him back in 6 months to see how he is doing.  Please pray for him as well, for his chest to grow and for him to keep compensating well!  Will you also pray for two other Jeunes babies, Lauren in Texas and Zoey in British Columbia, Canada, as their families have important appointments coming up and big decisions to make regarding future medical intervention. 

Thank you all again for all of the sweet words of encouragement and prayer throughout this journey.  We are so thankful for you all and know that you all crying out to God on our and Aubree's behalf has made a tremendous difference.  The peace we have felt from God throughout even the rockiest of times throughout this process has been like nothing I have ever experienced before.  Thank you Lord for comfort in times of need!  We also attribute all of the healing taking place in Aubree to God's work in her life.  Thank you Lord! 

Here are some pictures of Aubree now that we are home sweet home!


Saturday, January 19, 2013

Lady and Papa to the Rescue!

Ever since Aubree was born (and even before), Derrick, Aubree, and I have been supported, prayed for and loved by so many. Once we found out about Aubree's diagnosis and the wheels started turning for her to have a consultation in San Antonio for the craziest, potentially life-saving surgery we had ever heard of, our close friends and family who knew what we were planning rallied around us with support. Derrick's parents, Lady and Papa to the grand kids, quickly offered to accompany us and help in any way they could. So, we took a caravan of 2 vehicles down to San Antonio where they made arrangements for us to stay, super cleaned the room before we took Aubree in, and accompanied us to all of the different tests and appointments there. Their help and support was invaluable in that experience. On the way back from that trip, Rick and Deb started getting the ball rolling to purchase the awesome RV that they have now. While it had been something they had been thinking about, I believe that the future of many surgeries for our blue-eyed baby girl got that ball tiling even faster.

Fast forward to late November, early December. We knew that the time would be coming for Aubree to travel to CHOP at any moment. Again, Lady and Papa were on board and said to just tell them when to leave and they would be there. With less than a week's notice from the hospital, they accompanied us on the journey to CHOP.

And they have been with us every step of the way. All of the travel and lodging up there, staying with us for much longer than we anticipated being in Philly, missing their usual Christmas traditions back home, and the journey back home. Waiting with us while Aubree was back in a procedure or in surgery. Not to mention washing our clothes, Aubree's bottles, bringing us meals, getting us medicine, and anything else we needed to help us be with Aubree around the clock. Not to mention making the Ronald McDonald House room homey and decorated for Aubree's first Christmas. And most of all, the emotional support they provided for us and extreme sacrifice they made to be there for us.

Lady and Papa, I cannot adequately put into words how much we appreciate all that you have done, not only in support of Aubree but of us as well. We could never thank you enough. We love and appreciate you!

The pictures below are from September when we took Aubree to San Antonio for her first VEPTR consultation. They are some of my favorites!

Thursday, January 17, 2013

So Much Progress & Discharge on Friday

Aubree has been a "rockstar" as the nurses have been calling her since she got to the pulmonary floor. She got completely off of morphine and has switched completely to Tylenol and Motrin for pain for the last few days. Seriously, no narcotics after less than 2 weeks with 16 ribs still fractured? We've got one tough girl and one amazing, healing God!

Physical and occupational therapy have come by and worked with Aubree and said she is making great progress to getting back to where she was post op. One of her biggest issues is regaining her balance and center of gravity. The surgeon gave her a slight bit of scoliosis when he implanted her VEPTR device because it is slightly big for her, but the next smallest size was too small. Better too big than too small since we are tryin to expand her chest so that her lungs can grow as much as possible. So, the scoliosis paired with the 2 ounces of titanium in her back plus 16 fractured ribs changing her physiology, it only makes sense that she kind of has to monitor and adjust from what she knew before. But her progress is great and she is sitting supported very well and sits unsupported for a couple seconds at a time. She is controlling her head and neck great!

Speech came by to watch her eat solids and a bottle to be able to clear her for eating by mouth. She ate baby food and drank a bottle like a champ with no issue of choking, coughing, or potential aspiration. Aubree has been drinking almost all of her bottles by mouth with whatever she doesn't take by mouth going down the gtube. She has also been eating baby food and anything else she can get her hands on! Seriously, she fusses at us if we are eating in front of her and don't give her some food as well. She has tried blueberry muffin, cheddar puff corn, soft pretzel, apple slices, mandarin oranges, and strawberry nutrigrain bar. We are so excited she is wanting to taste and try food and that she is enjoying it so immensely! Aubree probably wishes I would give her bigger bites, but I am terrified of giving her too big of a bite and her choking. So, I just make sure I give her the tiniest morsels possible that even a mouse could not choke on :)

Also, albuterol treatments have been discontinued. Aubree is also only on Cpap during sleep (pressure of 8 with 2 liters o2 on the pixie, 1 liter on the ram cannula) and on 1 liter o2 through nasal cannula when awake. This is just slightly more support than she had before surgery. This is not unexpected because she is still healing from surgery and still has fluid around her lung where the surgery took place. As that fluid is transformed by the body as she heals, her lung will be able to expand more and she will be able to hopefully have gradually less support.

With all of this amazing progress, the plan is for us to be discharged tomorrow! She sat buckled in her carseat for two hours today just to make sure she wasn't in pain or struggled from respiratory standpoint. She passed the carseat study with flying colors, so we are confident she will be able to ride home in her carseat with no adaptations or further padding. We are so thankful to be in a place to take our sweet girl home! She is probably 95% back to her normal self. Please pray for our travels as we make the long trek back home and for Aubree to continue to get stronger. We are praying for an uneventful trip home!

We give all the glory to God for the healing and progress taking place in Aubree. He has sustained Aubree and us throughout this journey, and we continue to trust in Him as we continue on the journey to give Aubree the lung volume she needs to survive and thrive. Thank you all again for standing alongside us in prayer and support. We so appreciate it!

Additionally, please keep remembering the two other Jeunes babies who are a
Here at CHOP. Madden has still been battling some issues that keep him from being extubated. Please pray for him to be successfully extubated soon! Also, Will, who came for outpatient consultations and testing, is inpatient tonight after acting different after some sedation yesterday and a fever tonight. Please pray for him to be on the mend soon. (Sidenote: Madden's mom Mandy, Will's mom Mary, and I got to briefly meet on Monday. So thankful to have these moms who are in similar circumstances as a support system!) Both of these families so desperately want to go home with their babies as soon as safely possible!

Sunday, January 13, 2013

So Happy

We are soooo happy to be back on the pulmonary floor! We made so many friends with the staff on this floor, and Aubree got lots of admirers during all of her pre-op time here. Many of them have come by to greet Aubree since her return, which means so much to us that our girl is so cared for. Her nurse once we got to move yesterday and all of today was a sweet nurse named Cheryl that she had previously. She was just so sweet, and it was great to have someone who already knew us and Aubree. There is so much more privacy and less traffic on this floor, meaning less of Aubree crying as fewer people are coming in and out. She might be getting just slightly less anxious with the staff, but not much. We will take any progress we can get in this area!

Aubree is getting stronger and making more progress everyday! She is taking longer and longer sprints off of the cpap and onto the nasal cannula with o2. She sat up unassisted today for a few spurts today. She has also been playing with toys and has gotten her voice back. She has been talking and mocking our sounds like crazy today. So good to be getting our girl back to herself little by little! I have also been climbing up in the crib and playing with Aubree, which we have both loved! Dad and I have also enjoyed getting to hold our girl!

Aubree's Jeunes buddy Will made it to Philly today with his family. Please pray for his family in the coming days for the appointments, tests, and recommendations they have in the days to come. Today is also Aubree's Mammee's (my Mama's) birthday. Happy birthday to her from CHOP! Aubree is also wearing a gown especially made for her for after surgery. Thanks to Andrea Segal and her mom Denise!

Saturday, January 12, 2013

Moving on the Pulmonary Floor

Aubree has done 2 days of sprints off the Cpap machine onto a nasal cannula of 1 liter of o2. The first day, she did 2, 2 hour sprints and did great. The second day, yesterday, she did 2, 3 hour sprints like a champ. She is currently a couple of hours into her second sprint today and is rocking and rolling! Also, yesterday we just did one ipv treatment, and they were discontinued today. The doctors and respiratory therapists said it is just not indicated that she needs them any more because she sounds really clear and doesn't really have any secretions. they are continuing the albuterol she was receiving through the treatments. Now, it is just every 8 hours through the RAM cannula while she is on Cpap.

During rounds yesterday, they said Aubree was doing so great with her sprints off Cpap and was stable enough to be moved to the pulmonary floor. Praise the Lord for progress! So, we packed everything up and got ready to go, only to find out the pulmonary floor was full. Today, they say a room has opened up, given us a room number, and now we wait for everything to be ready for Aubree to be there. (Update: just got to her new room!)

Other eventful things are that Aubree has no more IV lines in and can finally kick her legs around without no-nos (immobilizers) on them. Also, I have gotten to hold Aubree in the rocking chair for a couple of hours the last couple of days. She kind of cries when she is first moved, but settles down pretty quickly. Transitions are just painful from all the trauma her body endured from surgery, but they want her moving around so her muscles don't get stiff. Physical and occupational therapy have also started up, and Aubree has worked so hard to tolerate sitting assisted and laying on her side. She cries at first when she is put in a new position, but settles down after just a bit. It is hard to watch her struggle in pain, but she is so tough and is making progress every day!

Our most continuous struggle since Aubree had surgery is that she is something they are calling staffphobic. She just panics when people come in the room that aren't family because she is afraid they are going to hurt her. It only makes sense because the medical staff have to move her and it hurts, so she made the negative association quickly. We are hoping this passes quickly since her pain should be decreasing as time goes on.

Prayer requests include for Aubree's pain to subside when she is moved, for her to not be so afraid of the staff, and for her to keep making great progress respiratory wise. Also, keep remembering her other 2 Jeunes buddies in your prayers! Thank you all for the prayers, love, and support!

Below are some pictures of Aubree getting closer to being back to her playful self, me getting to hold her, and Aubree working hard with a therapist.

Thursday, January 10, 2013

Still Progressing

Aubree is back on full feeds and doing great with that. She has also went down on the pressure from Cpap of 8 to 6 and doing great with that as well. From a pain management standpoint, the day before yesterday was pretty rough, and she was having to get IV morphine rescues throughout the day. They had her on Tylenol and oxy, but it didn't really do much for her pain. Yesterday, they switched her to oral morphine, and it has been the best at managing her pain without making her a zombie. Yesterday with her pain finally under control, Aubree played with toys, was laughing and smiling, and was kicking and playing with her legs and feet like crazy. We are so happy to be getting our girl back to normal.

In other news, yesterday dad and I went to reposition Aubree in the bed and her silver impregnated tank top (which she wears post op to help reduce the incidence of infection since silver has anti microbial properties) and bedding was pretty saturated with yellowish liquid. Upon investigation, her surgical site and dressing had become saturated and started leaking. After an orthopedic resident came, we got the dressing changed and were informed that this drainage was not inductive of infection and instead just normal drainage free surgery. Thank you Lord! During the dressing change, we also got a chance to see the incision and were told that it was healing nicely. It looked better than what I had envisioned for this point post op! Still a pretty big scar, but looking good from what we can tell.

Today, they are planning to give her some sprints off of the vent to just nasal cannula oxygen (meaning no pressure, just oxygen). Please pray for Aubree to maintain her o2 stats and vitals during this time! Her being able to have sprints off of Cpap are crucial for be to be able to be moved to pulmonary floor (a definite step down in intensity from the picu) and eventually home. They have also reduced her ipv treatments (forced, percussion type breaths that help loosen anything that might need to be expelled from the lungs), which have to be completely discontinued before Aubree can go home. Steps in the right direction!

Also, please continue to pray for Aubree's buddy Madden who has Jeunes syndrome and had his surgery 5 days before Aubree. He tested positive for a cold right after his surgery and is having a more difficult recovery period because of it. A simple cold for kids like Aubree and Madden is not simple at all for them and can affect them very severely like we have unfortunately seen with Madden. He has had to be reintubated after each of the two times they have tried to extubate him. Please pray for a speedy recovery for him and for whenever they extubate again to be successful.

We look forward to meeting another Jeunes family next week. Baby Will, born the day before Aubree, will be here at CHOP next week for outpatient consultations, labs, scans, and testing. Please pray for them in this journey, both traveling and medical, as many of these tests and such will be new for his family. It is just a lot to take in to get so many tests done and to take in all the information from them. Pray for a peaceful trip for them!

Thank you all again for all the prayers, love and support you have shown us. From cards and care packages to texts and calls to donations to messages on Facebook to silent prayers we might no even know about, it is all so greatly appreciated and lifts us up.

Monday, January 7, 2013

On the RAM Cannula and Overwhelmed by Support

Aubree has had a pretty good day. The highlight of the afternoon was her getting to take off the pixie mask and start using the RAM cannula since they reduced her pressure support. She is so much more comfy from that aspect because she doesn't have to wear headgear, just a simply cannula . We are also excited for the change because the pixie mask would lose its seal and blow that pressurized air in her eyes and face at times. Her settings are now Cpap pressure of 8 with 30% o2.

In other news, they are restarting her feeds again tonight at half volume. She had them cut off yesterday morning for the extubation just to make sure she didn't have anything in her tummy to vomit or aspirate into her lungs. Please pray for this to go well so that she can get back on full feeds. Not only is this beneficial for her to help regain strength, she can start having pain meds through her tube (like oral pain meds) once feeds are established well. Aubree has been crying, writhing, and wincing in pain today as they continue to wean her IV meds in hopes she can have some oral meds in her tube soon. She has had a few rescues and calms down once the pain subsides. Please pray for Aubree to get on a good pain regimen, hopefully oral pain meds through the tube that last longer and do not reduce respiratory drive. Also, please pray for her pain to subside as quick as possible. While we know it will not be quick considering she has 16 fractures in her ribs, a titanium rod implanted, and the wounds from being cut open, we pray for her to be pain free as soon as can be.

Also, Derrick and I are so grateful to those of you who have donated to the gofundme account our friend Andrea set up for us at love the name All in for Aubree! It is such a great descriptor for all of you who have come alongside us and our daughter. Hosts of people have reached out and expressed love and support to us and it means so much to us. It helps keep keep our spirits high. Most importantly, the prayers you all have prayed for us and have recruited from others have brought us so much peace and comfort in the midst of all the crazy. And, God hears and answers prayers! We have seen it so evidently through all of this! Every baby step towards full healing is a blessing from God. Thank you for continuing to pray for us, Aubree, and her doctors!

Post Extubation Update

These are the lengthy Facebook posts from earlier today. I am putting them here to update friends who follow us who are not on Facebook and for us to recount the day in the future.

1st post after extubation:

I cannot yet put into words what a terribly traumatizing and painful process this extubation was; however, she is still extubated and on the pixie mask with the trilogy ventilator on Cpap function with a pressure of 10. Once mama finally convinced them to give the poor baby some pain meds as she thrashed in pain and anxiety for an hour, she finally calmed down. She now has her giraffe that she sleeps with and is finally resting. Please continue praying for our tough girl and for mom and dad on the sidelines who aren't nearly as tough as she is. She is such a trooper but still has more to conquer in the road to recovery.

2nd post after extubation:

I probably posted the last status a little prematurely. I was pretty shaken and stunned from the extubation process and was not focused on the big picture of the whole situation. Glory to God for a successful extubation! Thank you Lord for allowing out girl to pull through a very difficult thing! Thank you friends and family for pouring out so many prayers and well wishes for our sweet daughter and us! Lord, help me to stay focused on you and the blessings you pour out on us! Maybe God allows there to be so many baby steps to a final recovery to give us (me) more opportunities to rely on Him and give Him praise for all He has done!


Thank you all again for the prayers lifted up for us and Aubree during extubation! Praise the Lord for a successful extubation! Lots of progress has been made since then.

- Aubree has gotten rid of a ton of fluid through her diaper since being extubated. I think she got rid of around 900 grams of fluid more than what she took in yesterday. She looks so much less puffy!

- Her 2 surgical drains and her arterial line were both removed this morning. Both removals require a lot of tape pulling and removing stitches. She was such a trooper!

- Aubree can suck on her paci again and have some comfort! She couldn't have it while intubated and wouldn't take it right after extubation. I think she was a little bit traumatized from all the negative simulation in her mouth. However, last night she took it and has been happily sucking away ever since :)

- We saw some sweet smiles this morning! The first we have seen since surgery! She can't smile as big as she usually does because of the mask, but they are still so wonderful to see!

- Aubree only needed 4 rescues I believe since extubation. One of those was preventative so she would not be in pain during the removal of the drains and arterial line. She seems so much more comfortable now and does not require nearly as much medicine to be in that comfy state.

- They bumped her down to Cpap pressure of 8 this morning, down from 10 yesterday. We also decreased her o2 from 40% to 30%. As long as she does good on this, she can will continue being bumped down. Also, with decreased pressure support, she can try RAM cannula again, which is much less involved than the pixie mask. It is just a little bigger and thicker than a regular nasal cannula. Please pray for her to continue weaning down successfully!

Thank you again for all of the support from you all! We are so encouraged and uplifted by you all! And, just to share more picts, here are some favorites from late October when Aubree was at Arkansas Children's Hospital for observation.

Sunday, January 6, 2013

Breath Holding, Extubation, and Support from Friends

The last 36 hours have been pretty rough to be quite honest. Since they have started weaning Aubree off of her pain and sedation meds that she started post op, she now wakes up from any kind of movement or talking and starts crying immediately (not audibly because of the breathing tube). The worst part about this, besides seeing our baby scared and in pain, is that she holds her breath when she starts to cry. Because she has no lung reserve to speak of, her oxygen level desaturates very, very quickly when she is doing this. Also, her heart rate plummets, she turns beet red, and breaks out sweating like crazy. Like I posted on Facebook, the worst of these times she desatted to the 50's, turned blue, and her her eyes rolled back in her head. All o this within less than a minute. Thankfully, the respiratory therapist just happened to be in the room at this time, and she was able to manually bag her with pure oxygen to get her oxygen sats up while rescue meds were drawn and given to her to help her calm down again. In the last 24 hours, she has needed 12 sedation and 9 pain med rescues.

However, the light at the end of this tunnel is extubation. The hope is that a lot of it has to do with the negative stimulus with the tube. We talked with Aubree's medical team this morning during rounds and they are hoping to extubate her to Cpap (pressure support) through hopefully RAM nasal cannula this afternoon. They will have a plan in place and already ordered for rescues that she can have while extubated in case she holds her breath and desats again. One other hurdle in the way is that her airway is very swollen from the breathing tube and there is currently no leak (airflow) around the breathing tube. They started her on a dose of steroids this morning to help reduce some of the swelling and allow Aubree to move air through her airway. We ask for you to please cover our girl in prayer for a successful extubation, that they would not have to reintubate her in a crisis situation. Also, please pray for a lot of her pain and anxiety to subside with extubation. While we know she will still be in substantial pain (she did have major surgery with a titanium rod implanted and 16 cuts/fractures in the ribs on her right side as part of the procedure), we hope that she is much more comfortable not intubated. I think I would freak out pretty good if I woke up and felt like a straw was jammed down my throat that I had to breathe out of!

We are truly grateful for all of the sweet words, prayers, and support bestowed upon us during this time. It has truly been overwhelming, in a good way of course. With yesterday being such a hard day, a sweet surprise and act of kindness that brightened our day was a dear friend of ours, Andrea Segal, who started a gofundme account at for people to give money to help with expenses associated with all of Aubree's medical care, travel, food, and other expenses associated with her hospitalization. Many of you have asked for a way to support us financially, so I am sharing this account here. (I am not sure if this link will be active or if you will have to copy paste it to go there since I am posting from my phone.) It has really been such a blessing to have our friends and family come alongside us and bear the trials and share in the joys and victories of all this with us. Really, knowing we have an army of support helps in in all these experiences that are so very hard has made such a humongous difference to us. Thank you so much to all of you for all of the many ways you have shown us and our sweet Aubree support.

Also, as I am typing this post, a code blue was called down the hallway from us. Would you please pray for this child and family? I do not know the outcome of the code situation, but hurt for this family. It also reminds us of the criticalness of the children, including Aubree, in the picu and how delicate the recovery process is. Please remember Madden, Aubree's buddy with Jeunes syndrome who had surgery a few days before Aubree, as he is still intubated from complications with a cold he is battling. However, he is on the mend and on the track for extubation as well.

Just to share some more pictures, below are some pictures of Aubree with us the night before surgery making silly faces together. We can't wait to have our sweet girl back to her fun and spunky self! I love that the one of us kissing her is when she is happiest!

Friday, January 4, 2013

More Updates & 2nd Surgery Scheduled

They are experimenting with weaning down Aubree's vent settings, but with a few more changes from yesterday morning's change since it wasn't successful. Yesterday, they increased her pressure and lowered her volume a bit, along with the same reduction of breathing rate from 30 to 25 breaths per minute. This change with the increased pressure support Aubree tolerated great. She tolerated this well and her blood gases looked good, so they reduced the rate down to 20 breaths per minute. We are much happier with this weaning approach that was first tried of just her rate decrease. This morning, they slightly decreased her tidal volume by one, but got really agitated after she was repositioned and was clamping down on breathing tube and not breathing. This skyrocketed her co2 levels and her o2 saturation dropped. She was struggling majorly with lots of nasal flaring and almost lofting her head up when trying to breate. Even with a rescue sedation med, she was not improving. The team of docs came by and decided to reduce her rate to 7 breaths per minute, but increased her pressure support substantially to 20 (pressure when inhaling) and her peep (pressure to 7 when exhaling to keep the pockets in her lungs slightly open like they should be). This means she is doing most of the work taking breaths, just with lots of pressure support to make sure they are good, deep breaths. Please pray for Aubree to tolerate these vent changes well and that she will breathe even more on her own. Please start praying now for when she is extubated (the breathing tube and vent support removed), that it will be at the right time with the right support she needs as she steps down from the vent , and that her body will be healed and strong enough to start doing even more of the respiratory work on its own.

With the end goal of extubation and starting to work towards that with vent settings, they also have to start weaning down her strong pain and sedation meds since they slow down respiratory drive. Aubree has already had to have a few sedation rescues today as these meds have been reduced. They have also slightly increased a pain/sedation combo that doesn't decrease respiratory drive, but it it is kind like when she was out of surgery all over again in that they kind of have to play with it and see how she responds to get the right dosage. So very hard to watch your baby in pain and struggling as they work this out. Please pray for this to be worked out quickly to keep our girl comfy and happy!

She started spiking a fever again (over 100) with her heart rate and respiratory rate climbing, but last night's nurse was very on board to go ahead a give her tylenol to stop the fever in its tracks so it didn't get so severe like last night. Aubree rested comfortably with a temp of 97.5 (her normal) with her normal resting heart rates and respiratory rates. She is also sooo much pinker after her blood transfusion and her hemoglobin is back up. She is also tolerating the ipv percussion type sessions well. So many answers to prayer!

Today, they started half amounts of her normal feedings, instead of pedialyte and pedialyte diluted feeds. Pray for her to tolerate these feeds and for her little system to get back to normal since anesthesia, pain meds, and sedation meds slow all that down considerably. going to give her some increased miralax to hopefully help with that.

Also, Aubree has been opening her eyes more for very short periods of time. She even reached for my phone when I was showing her one of her favorite videos of her and daddy laughing together. Another time, she started kicking her foot up at me and playing in a way we play at home. Our sweet girl is still in there!

Also, we got a date for Aubree's second implantation surgery. It will be April 9th, with Aubree admitted probably a couple days before for pre-op stuff. Never too early to start praying for this upcoming surgery as well!

Thank you all so much for praying for us and especially Aubree through this time. We have so much peace and comfort throughout this process and thank you for praying for this for us! Also, sorry for all the overload on medical jargon and vitals. I am trying to keep up with it all to hopefully make the post op experience easier on her the second time around!

Just so this post has pictures, below are some pictures of Aubree from Halloween, which she spent at Arkansas Children's Hospital for respiratory observation. She was the cutest honeybee ever! I said she was a honeybee instead of a bumble bee because she is so sweet!

Thursday, January 3, 2013

An Update Post Op

Our precious girl is back in the picu and resting comfortably most of the time. The anesthesiologist said that she has a high medication tolerance, meaning she requires more medication than what they would expect to keep her comfy and without pain. Once she got back in the picu, they started her on a low dose of continuos pain and sedation meds and gradually increased as she kept being in more pain. They would also give her rescue meds when she would wake up in pain, which are just immediate doses of the meds she is already getting on the slow drip. Sometimes she was having to get these as often as every 20 minutes. This was a very hard process to watch her writhing in pain as they try to find the happy medium of meds for her. However, I think that we finally have a pain and comfort regimen that is working for her. Aubree will know open her eyes for a couple of minutes and not grimace in pain like she had been. They have also added another medicine that has sedating and pain management properties that she can still be on when she doesn't have the breathing tube, while the other ones she can only be on a very low dose or not any at all.

They started her on half her normal volume of feedings, but instead of breast milk and formula, they are doing pedialyte through her tube to see how she tolerates that for 24 hours. Then, the plan is to move to 1/2 pedialyte, 1/2 normal bottle contents through the tube (still the reduced volume). All of this will be through her new gtube for now because she can't have anything by mouth with the breathing tube in. Please pray for Aubree to tolerate these so that she can have nutrition to help her grow stronger and heal.

We anticipate Aubree staying on the vent with breathing tube at least through the week. Please start praying now for when they will extubate her (take the breathing tube out and be off the vent), that she would be able to maintain her respiratory function on whatever lower level of support she will be put on (most likely Cpap).

Today, they removed her catheter because she was leaking around it anyway. So, now he will have to have diaper changes which involves more frequent movement which can be painful for her. Please pray that she will tolerate her changes well and with little to no pain. Also, now that she is receiving pedialyte and soon to be feeds through her gtube, they have discontinued her IV fluids.

Today, Aubree opened her eyes for a few minutes and watched a few videos of her and daddy laughing together, which are some of her favorites. She would also follow me with her eyes. When she stirs, she also moves her arms and legs. While she needs to be resting as much as possible, it is good to know our little angel is still in there.

Below are some pictures of Aubree with us (you might have seen some of these on facebook already). There is also one of her the morning of her surgery before she went back. The others are her post op. The one of her sleeping is the day of surgery and the other is her today, about a day post op. There is also an X-ray of her chest post op. So much more already on the side!

Thank you all so much for the overwhelming amount of encouragement and prayers via text and facebook. We are also so thankful for those family members who are able to be with us and support us physically with food, drinks, and other needs so that we never have to leave Aubree's side. Please continue praying for our tough little girl as she recovers. Praise the Lord for His healing already taking place in her tiny body. We pray for even more healing in the days and weeks to come!