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!

 

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!

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!

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!

Moving on Up...to 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.

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.

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 http://www.gofundme.com/allinforAubree.We 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!