Ella's update - February 27, 2016

A great morning that kicked off a great day. Ariella continues to do very well with her time off from the vent. This morning we spent some time out of her room playing and reading books in the common area. Today was another full day where we had some special visitors along with lots of playtime and activities. Pastor Josh and Mrs Kirsten stopped by and played bubbles as well as brought Ella a special gift. Today was also a special day because Ella spent most of the day with mommy bonding and playing together. The other good news to come from this weekend is that we have a tentative discharge date. We are working towards being able to return home next Monday March 7th. Ella is healthy enough to go home and mom and I have completed all of the necessary training. While I certainly do not want to outpace God's will and timing I am absolutely focused on getting us home on or before next Monday. You all have been praying so faithfully and so strongly with us and I would ask that you continue to hold us up, we are very close, very very close. Thank you for faithful support. 

We are all more than conquerors.

Ella's update - February 26, 2016

What a great day. Ella had a day filled with friends, fun and progress. The day started with an hour off of the ventilator and no breathing support at all. Our warrior maintained herself quite well during that hour. She had several visitors throughout the day including our friend Cindy who came and dropped off some puzzles and played with Ella long enough to let daddy shower. Thank you Cindy.

Nana and Poppy also drove down from Massachusetts to spend some time with Ella. Their visit coincided with Ella's second hour trial off of the ventilator. This gave her the opportunity to go outside with her to visit the fish pond. Though we were not outside for very long it was great to get some fresh air. The day ended with a special visit from Leila, Dasha and Princess - three friends from church. And the ladies brought a very special present with them a bear named Super Ella. When Ella received her bear she started to hug it and say "this is like a super me". Our angel is super. Everyday she gets stronger, everyday she does more, everyday she takes a step closer to getting back to where she was before this episode occurred. 

To illustrate exactly what I mean you can see or rather hear for yourself just how well she is doing. Enjoy the video clip below that demonstrates how well our baby is doing. We are all more than conquerors.

Ella sings "Let It Go"

Ella's update - February 25, 2016

So in addition to all the great progress Ariela has made over the last week, she also took time to plan a surprise party for her brother. Charles is a teenager now and turned the big 13. Ella was very excited to have the opportunity to decorate her room and celebrate her brother's birthday. It was that much more special becuase Charles got to take a walk with his younger brother and sister through the hospital floor.

In addition to planning a surprise party, Ella has also been doing very well with her therapies and rehab. In fact Ella has successfully completed 4 separate trials of being completely off the ventilator. This is called a trach mask trial. During theas trials Ella has had increased secretions, which is normal, but still a little nerve racking. Other than some coughing and more secretions she has passed with flying colors. 

Though Ella's muscles continue to get stronger we are struggling with her feeds. She has had a couple episodes of vomiting and her stomach is not emptying very quickly. The doctors here are trying a couple of different things to help maintain her nutrition and also speed up the process of emptying her stomach. This was a problem at Yale while we were in intensive care as well. For now she is doing ok, but this maybe something that we have to address after we are back home.

Every day that Ella does well is a day closer to being released and sent home. Keep praying, we are all more than conquerors. 

Even more #beards

Uncle Greg has joined the team. Ella is so excited to see all these beards. Keep the pics coming. #BeardsformyBaby

More #beards

Uncle Troy has joined the team #BeardsformyBaby

Ella's update - February 23, 2016

To say they things are going well would be a slight understatement. Ella is making great progress. She continues to receive occupational and physical therapy daily along with speech pathology. She has been introduced to a new device called a prone stander that allows her to stand up with assistance. This has been exceptionally beneficial, not only for her muscular development, but also for her psychology. Ella has become more comfortable with her trach and more importantly she is open to allowing us to do the necessary maintenance and interventions to ensure that it stays clean, sterile and functional.

Additionally, in typical Ariella fashion she is winning the hearts of her nurses and therapists. One of her nurses, Miss Lucy, is responsible for the beautiful braid that you see in the picture. We are grateful for a dedicated and compassionate team of health care professionals that are going to help us us get our baby back home very soon. Continue to pray that with each day she grows stronger and we grow more competent so that we can all be home soon. We are all more than conquerors.

Ella is making even more progress

Ella's update - weekend addition February 20-21, 2016

Hello #TeamElla, well we made it through one more weekend which means we are that much closer to getting home. Unfortunately Ella did not get to do much in the way of moving around this weekend, however the entire family was the hospital all weekend so she got to spend lots of quality time with her brothers. She even had a special visit with Titi Nilda and Mima, who came bearing gifts. Among the presents was a beautiful butterfly bracelet from our friend Netmari. Ella was very excited to receive such a beautiful gift. Thank you Netmari for such a beautiful gift.

Mom and dad did a lot of Ella’s treatments this weekend including caring for her trach. There is not much of a learning curve in providing her respiratory treatments, however, doing them with the trach in place does take some getting used to, but with each day we get more comfortable. We continue to progress forward.

We are all more than conquerors.

Getting thicker...

Time is quickly coming to a close. As Ella continues to improve and mom and dad get trained the warrior will be home and the #BeardsformyBaby campaign will be ending. If your are growing your beard let us know. Tweet a pic of face fro to @wearemorethan and don't forget #BeardsformyBaby.

Ella's update - February 19, 2016

Hello Team Ariella. We are in full rehab and training mode. Ariella is seen by an occupational therapist and a physical therapist everyday in addition to lots of play and activity with her respiratory therapists and nurses. Meanwhile mom and dad are learning trach care and will be trained very soon on how to operate and maintain her new ventilator. 

Training is going well and things are moving along in fact dad did his first trach change earlier today. The procedure went quite smoothly  however our angel continues to have stomach problems and immediately following the trach change because she was so upset and anxious she ended up vomiting all of her morning feed. This was a bit of a concern for the doctors given that at the time of the train change  her feed been finished for almost two hours. There should not have been nearly as much formula in her stomach as what she threw up. The doctors are thinking that it may be taking her too long to digest the formula she's receiving in its current concentration. She is currently on Pedialyte and the doctors decided to dilute the concentration of formula she is getting in her feed in the hopes that they can settle her stomach over the weekend and have her evaluated by their dietitian on Monday. In the mean time her energy and spirits continue to pick up and get stronger with each day. She had a special visit with two of Daddy's friends from his job Auntie Jen and Auntie Melinda played the cupcake game with Ella.

In terms of discharge at this point it is still premature to get a sense for when exactly we will be able to come home, but everyone has been pleased with how mom and dad's training has progressed to this point. We get the feeling that our stay may not extend beyond a week. Continue to pray. We are all more than conquerors.

Ella's update - February 18, 2016

Greetings Team More Than a Conqueror. So it took some doing  and there were several hiccups involved with our admission, apparently there were communication challenges between Yale NH and HSC, however eventually we were placed into a temporary room and met some of the staff. It is always interesting for us to get oriented with new healthcare providers and familiarize ourselves with how different organizations operate and go about administering care. Everybody has their preferred method or approach to various procedures and operations. While on I am confident in the staffs competence it is always interesting to hear how people approach the same process differently. I guess health care is no different than any other industry in that regard, different organizations look to differentiate themselves from their competitors. The staff here seems quite knowledgeable and just as important they have a lot of love and warmth toward their children. There was one respiratory therapist that made a particularly positive impression on Ella yesterday. The gentleman's name is Nafees, he has a long white beard, speaks with an Indian accent and captured our little angel's heart and I am certain she captured his. While it is still early I think that Ella is in good hands. The team seems to be clear that this place is the last step before getting our baby back home, but everyone is professional and wanting what's best for Ariella. There are also some accommodations available here that should help to make our training process go smoother and put us on a solid path for getting back home. Please continue to pray for Ella's continued health and strengthening and please pray that we learn all that we need to learn in order to provide the best quality life that we can for her. We are all more than conquerors.

We are on our way

So because of your prayers and diligence we have received word that Ariella is good to be transferred to hospital for special care at noon. She is feeling better today and we have not had any additional episodes of desating. Among her morning's activities included changing into her special ladybug girl outfit, thank you Mother Stewart, and returning her rock to the healing garden after she painted it.

It is hard to put into words the level of gratitude that we have to the Yale New Haven pulmonary, respiratory, ENT and PICU teams for everything they have done to not only save Ella's life but put her on a path to a better quality of life. We have met so many special friends and hope that our paths cross again outside of a hospital setting. We thank God that we have gotten to know you all and take comfort and the fact that you all are taking care of the children of Connecticut. Families are in good hands because of the amazing nurses, respiratory therapist, surgeons and physicians at Yale New Haven. God bless you all and thank you very much for everything. Our our little Conqueror and the rest of our family are stronger because of you. We are all more than conquerors. 

Ella's pending transition, still needs prayer

So the big day is a nearly upon us as it stands right now tomorrow morning around 11 o'clock Ella should be transferred from intensive care at Yale New Haven to rehab at Hospital for Special Care. As you can imagine we are all thrilled at the prospect of LS stepping down in moving from critical acute care 2 more rehabilitative and chronic care and maintenance. We have been encouraged over the last week and a half to observe and track her progress and this transition brings our angel one step closer to returning home. In the midst of this exciting time however mom and I were notified by the hospital that Ella had an episode this evening where her oxygen SATs dipped below normal levels. This is the first time that we have experienced an episode like this since the tracheostomy. We are still trying to get to the bottom of exactly what's happening however we are not comfortable with the idea I'm transitioning from intensive care if ella is not safe to do so. I said on our last post that as we get closer to the finish line then need for prayer only increases. Please continue to pray for our little conqueror and keep her on your mind. We are excited after chance to transition but we do not want to move faster then she is ready to move on. Thank you for your prayers and concerns. We are all more than conquerors.

One more #BeardsformyBaby member

The #BeardsformyBaby team would like to welcome our newest member, Uncle Daniel. Thanks for the support Daniel and welcome to the team.

#BeardsformyBaby

Shout out to Ella's buddy John P. @QPr75 for joining  #BeardsformyBaby movement. Your face fro is looking good bro.

Getting closer to coming home - February 14, 2016

Greetings #TeamElla,

Our Conqueror continues to grow stronger day by day and become more accustomed to her trach. She is still very sensitive when it comes the tracheostomy site. She gets very upset when we have to adjust or clean or do anything with that site, but that should hopefully lessen with time and as the site continues to heal. Mom and Dad have started some basic training on how to manage and care for Ella with her trach. Mom changed the straps that hold the trach in place on her own yesterday and both parents have had to suction through the trach. As we learn and do more with the trach we are very close to leaving the hospital and getting one step closer to going home.

Within the next 24 to 48 hours we should be transitioning from Yale New Haven PICU to Hospital for Special Care in New Britain. While at special care Ariella will be engaged in significant rehabilitation to regain her strength and coordination. Mom and dad will engage in very intensive training and learning to prove we are able to not only maintain Ariella and her trach but also be able to intervene in times of emergency. Our ability to prove we can keep our baby safe will be the only thing that keeps us at special care. The sooner we can prove that we can keep her safe the sooner our family will be whole again in our new home.

Some amazing members of this team have reached out to us to offer their support and guidance as well as the benefit of their experience living with a trach or caring for someone who has a trach. I think now that we have a clear understanding as to the timeline and what will be required of us it will be easier to have some of those conversations. I look forward to connecting with those members of this team that can provide us with insight and context that will not only give us a sense of what to expect but also give us an advantage in our training so that we can get home that much faster.

We are getting closer team, there is a light at the end of this tunnel and it is big and bright and beautiful. Thank you all for your unwavering support and commitment. Please do not relinquish your tireless prayer and concern for us. We have made it through some very dark times but we still have a bit more to go. We are grateful for your constant intercession, is working. Through you Christ has carried us this far and we look to our God and friends and family to carry us home. We are all more than conquerors.

Ella goes to story time - February 11, 2 026

Hey team I just wanted to share some quick photos with you of Ella going to story time in the hospital earlier this week I'm in the process of putting together a more thorough update. There have not been significant changes we are starting to get a clear picture as to what the path looks like in order to bring Ella home. Thank you for not losing heart in your prayers thank you for not giving up on us thank you for standing by our side. We are all more than conquerors.

Ariella update_Trach change - 2/10/16

Once again Ariella had another good day. The day began with her spa treatment, including washing her hair and skin and getting a French braid for her hair. She also made her own jigsaw puzzle with her new bestie Leah from Child Life. In the afternoon she got a nice visit from Daddy and her big brother Charlie. We arrived right before the big event of the day, the changing of her tracheostomy. If you were not aware the trach needs to be changed every so often for sanitation purposes. The first trach change happens in the hospital and is performed by the doctors, but eventually mom and dad will learn to how to change her trach and can do it at home.

Ella wad incredibly brave during the procedure. It was extremely uncomfortable and she was very upset, however she hung in there and the change went flawlessly. The doctor commented that the sight of her wound look very good and the trach change she was successful. Following the change Ella got to play and do a special painting project with her brother. It was a good day. The timeline for transitioning from intensive care to the rehab hospital is still being worked out. We are hopeful that it will be middle of next week.

Keep praying team. We are all more than conquerors.

Ella playing in the snow...that's right

Greetings #TeamElla I am pleased to report that our little angel continues to make great strides with her trach. Her tolerance for it has improved to the point where she is no longer receiving pain medication. Her respiratory treatments have been spaced out to every 4 hours and she's receiving medication every 8 hours. These are all very positive signs of her improved health and strength and more importantly her tolerance of the tracheostomy. In fact she has been doing so well that yesterday Leah the Child Life therapist challenged her to a snowball fight. Leah, our amazing friend from child life, we have mentioned her in earlier postings,  went outside and packed a bucket full of snow and brought it into Ella's room so they could make snowballs and a snowman. Leah really has been a godsend by helping our baby cope with her trach and more importantly feel like a normal three and a half year old by engaging in all sorts of positive therapeutic play. We said it before but it's worth saying again, Leah thank you so much for the amazing work you are doing with our child.

Because Ella continues to make such good progress we have started to have conversations around discharge and transition. While we don't have a definitive time line at this point we are fairly certain that within a week or so Ariella will be transferred from intensive care to a rehab facility much closer to home. As soon as a   timeline is ironed out we will continue to keep you all abreast. I also want to take this time to remind all of the men on #TeamElla rock those #BeardsformyBaby my baby. Let Ella know that you are standing with her. I want to encourage her to continue to work hard and be great. Thank you for you interest and support we are so grateful to this amazing group of people that have formed a winning team in support of our special little warrior. We are all more than conquerors.