all praise and honor and glory

Gaby is ECMO cannula free. She had a great night after coming off ECMO. This morning her surgeon removed her cannulas and the tube in her chest that was draining from surgery last week. Her vent settings are being turned down as she is doing beautifully. Her oxygen saturation is in the 70s! She looks great.

Her PICU doctor looked straight at me this morning and said, "Shelley, she is better. We fixed her. She is doing great." What reassuring words. I believe that God fixed her, but He sure did use the staff and docs here to do that!

So the Browns are on the road to recovery here in Indy. God, pour out your mercy on us as we place our hope in you.

No one can say it better than Him...

Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12

I pray that the eyes of your heart may be opened in order that you may know the hope to which He has called you, the riches of His glorious inheritance and His incomparably great power for all who believe. Ephesians 1:18

May Gaby's continuing story lead to eyes being opened to the ultimate hope we have in Christ, our salvation and life with Him.

off

Gaby is off ECMO. In the morning she will have a surgery to remove the cannulas from her neck and she will begin the long road of recovering and healing her lungs.

There are many unknowns and anxious moments for us in the days ahead. But, as we have done before, we continue to give Gaby to the One who created her, loves her, and desires to heal her wholly. With Him she is safe. In Him we rest. In Him we continually place our hope.

We give Him all glory for what He has done and will continue to do in her life and in ours.

keeping her eye on us

Gaby has been waking up over the past couple days. They are letting her come out of sedation periodically to help get more fluid off her body and it is pretty cute. She looks at me and blinks and wiggles her fingers and toes and tongue. It is such a blessing to see her again.

The plan is to continue clearing her lungs and then when they are clear and at her best bring her off ECMO. Our hope and prayer is that her clear lungs are enough to sustain her when that time comes.

May you each have a blessed day.

might be today

Today might be the day that Gaby comes off ECMO. I know it seems like you have read that before, so imagine what we are feeling...little bit of I will believe it when I see it and a lot of excitement.

Her xray looks a little better today. Her upper lungs are still collapsed and not good. But they are going to try this afternoon to trial her off. If she needs more time to get those upper lobes opened, she will go back on.

Anxious to see what God has in store for Gaby for today and waiting to be amazed by Him.

back at the waiting game

We are back at the waiting game here with Gaby. After surgery, Gaby's lungs are full again. This was to be expected from her fluid intake during and after surgery, but it doesn't make the waiting any easier. We are now waiting to see if Gaby's lungs will clear so that she can come off ECMO. The shunt should provide her with enough oxgenation to make up for crummy lungs when she comes off and is breathing on her own. But, it may not make up for completely whited out lungs, which is what the xray reveals today.

The plan and hope is to get her lungs back to where they were prior to heart surgery and then take her off ECMO and watch her new shunt in action. So they are bringing back in the bronchotron ventilator since it worked so well before.

So, back to praying for her lungs to clear and fluid to come off her little body. She is so swollen from her fluid overload that her skin is so tight it looks like it could burst.

We are thankful to be waiting for continued healing and that the surgery drama is over.

One of those days....

Today was "one of those days."

One of those days that you look back and wonder how it was possible for everything that happened to happen in a single day.

One of those days that brought every feeling possible. One moment we were anxious, the next relieved. Relaxed for a second, but not for long before we were nervous again. Moments we were able to smile, others we were too tense to talk.

One of those days that we go to bed relieved that it's over. Thankful that we made it, but worrying about tomorrow.

Today Gaby had a surgery that was full of risk, but was not optional. Like all medical procedures, a consent forms had to be signed. Our consent form was different though. The form we signed included the words "50% mortality." This was the reality of the day and we knew it.

Gaby did great during the surgery. She came back on ECMO, mostly because they didn't want to push her and wanted her body to rest. They were able to put a 5.0 mm shunt in to replace the 3.5 mm shunt that she had that wasn't functioning. After surgery we were excited that she did well and about the thought that this shunt could buy Gaby the time she needs to get stronger and ready for surgery #2.

Not long after surgery we were starting to sense that things weren't quite right and the staff began to pay close attention to the amount of blood that Gaby was losing (some drainage is to be expected). After closely monitoring, the doctor decided that something had to be done. They first tried to push her off of ECMO, but her body showed that she couldn't handled it. The only other option was to open her back up to find out why she is bleeding so much.

The surgical team came into Gaby's room and Dr. Abraham discovered that Gaby was bleeding in two areas and was able to get this stopped and closed her back up.

Now, after a very full day Gaby is stable and is resting. She is still on every machine and monitor that we want her off of, but for the moment we are fine with that.

So, today was "one of those days."

One of those days that has wiped us out.

One of those days that we will look back and wonder how we did it.

One of those days that was completely out of our control.

Tonight we will go to bed knowing that we made it through a rough day, and if tomorrow's "one of those days", we'll make it again because we know that He will be in control and will provide the strength that we need.

Update: They were able to correct the bleeding and Gaby is stable.

Update: Gaby is bleeding and they are having to reopen her chest to check things out. We are waiting to hear the results.

Gaby just came out of surgery and everything went well. We will post more info later.

Gaby's Surgery

Today Gaby took a slow trip to the cath lab, some compare it to a train as she is followed by multiple medical staff, monitors, and her ECMO support system. The purpose was to look at her heart and see if a larger shunt would help her cause. What they found was not what they expected.

The cath revealed that Gaby's current shunt is not functioning as it should. She had an echo within the past week that showed the shunt in good shape, but sometime since then things changed. Because of this, heart surgery and a new shunt changed from an option to a necessity. Gaby's heart cannot function without a shunt.

Now if Gaby were in good health otherwise, they would not be putting in a new shunt, they would be performing surgery #2 of the 3-part surgery series. Gaby's current health situation, specifically her lungs, make surgery #2 impossible at this time.

So tomorrow morning, Gaby and the staff will form another train and slowly make a trip to the operating room. At that time, Shelley and I will watch and again, turn her over to the one that created her and we will rest in knowing that He loves her more than we do.

Gaby's surgery set for 8:30 AM tomorrow

on her own

Gaby is off ECMO as of this morning. She is doing relatively well considering. Her oxygen saturation is settling in at 59 (good for her is 70s). Her carbon dioxide output is in the 60s. So, her lungs are doing about the best that they can on the conventional vent. They are thinking about putting a new shunt in her heart as she may be growing out of the one she has.

So, we are going on a trip to the cath lab this afternoon to have a look and see if that is an option.

We are excited by progress and what is coming next. Although turning this corner and seeing the longer road ahead is tiring. But Gaby is doing her part, so we can stop whining and step up our strength.

_____________

Update: Gaby is back on ECMO to let her rest. She did well, but her numbers aren't good enough to keep her off long-term.

They are taking her around 2pm to do a heart cath. This will allow them to look closely to see if a bigger shunt would be a good option for her. The reason they are considering this is because she cannot have her 2nd heart surgery until she gets stronger and this will help her oxygen saturation. In other words, it buys time for her to grow and recover.

If they decide that this is a good option she will have heart surgery tomorrow morning.

If they decide that the surgery is not the right option, they will work to get her off ECMO long-term and work to get her upper right long clear (the rest of her lungs look good).

___________

Cath went good. Heart surgery tomorrow to put bigger shunt in.

for those still up

Slow going, but so far so good. She needs to clear her upper right lobe in her lung and then they will continue to turn things down tomorrow morning after xray. She began the day with a flow of 400 and is now at 300. At 140 she is "off ECMO". There are still A LOT of things up in the air and A LONG way to go. But we are proud of her and cling to our hope.

Watching and Praying

Dr. Sichting won't be in until late afternoon/evening so probably begin the exciting weaning process then. May be a long night for the Browns! Thanks for all the thoughts and prayers. Keep them coming! Our God will reign and we believe that today He will show His grace and power in and through Gaby.

We will update blog as soon as we can tonight.

bronchotron

The bronchotron appears to be creating success in Gaby's lungs. Her chest xray shows clearing. Her volumes are in the 50s and they can hear breath sounds with a stethoscope that they haven't been able to hear in weeks.

The plan is to continue the bronchotron today and get the right lung clear. Left lung is completely clear today. Tomorrow they are going to push her. Beginning weaning the ECMO flow and see how her body responds. The better she does, the more they will wean. Tomorrow is the day she needs to show that she can do it on her own without her ECMO circuit. We believe this is her best window of opportunity to come off and we are excited.

"God, please" continues to be our prayer.

Happy 1/2 Birthday Gaby and Macy!

Today Gaby and Macy are 6 months old! We had a 1/2 birthday party here at the hospital, all 7 of us! It was very fun and CRAZY. I will post some pics tonight/tomorrow.

We are so thankful for each moment we have had so far with our precious girls. They are truly amazing and add so much to our family. We love Gaby and Macy!


Gaby is on a new ventilator today, called the Bronchotron. It is doing some amazing things so far and it has only been 45 minutes. The plan is to see how much junk it can get out of her lungs between now and chest xray time in the morning to evaluate what to do next. I am confident this will work because it is the first time they have EVER tried it before on a patient in Gaby's situation. Gaby is unique to say the least, so I believe this unique treatment will work! We are so thankful for docs and staff that think outside the box where our little Gaby lives!

uncensored answer

A question we all hear and ask many times is "How are you?" Most of the time we don't really think about the answer, unless we aren't doing very good. Lately, when I am asked this question my mind wrestles with how to answer. Do I say fine because the thought of answering truthfully is too scary? Or do I unload all my emotions and give the answer that I am feeling at that moment?

So, here comes the honest, uncensored answer. As Gaby's doctor would say, I am a hot mess. I am all over the place emotionally. I am sad, angry, fearful, and numb. In my mind I am telling myself to be strong and positive. But my spirit wants to go home, go into my bedroom, lock the door, get in bed and never get out.

Gaby is wearing out her welcome with ECMO. She has now been on it 3 weeks and should be showing more improvement. We are beginning to talk with doctors about what to do next because the same things they keep trying aren't getting her better. They aren't saying that today is the day she comes off, but it is time to push her. Time for her to show that she wants to get better.

I am not sure how to feel about any of this or even know what I actually do feel. My mind is racing and my thoughts are all over the place. My mind keeps going to places, circumstances, and future situations that I don't want to go through and I quickly tell my mind to stop. At times today I have felt like I am in a hole, clawing to get out and get some air. Then I get mad that I am being so full of self-pity. I know, drama, drama, drama.

So today I am praying for strength and the ability to take things moment by moment. I am also praying for hope because I can't find any on my own today and I feel that God isn't pouring it out into my soul either. I know He is there, but sure wish I could feel Him. I need to feel that hope. I am not asking for a hope that she will be healed and we will all go off into the sunset today, even though deep within me I believe or used to believe or may believe again that God can do that. But even though I know, I want to feel that HOPE that He will be with Gaby and us whatever comes next.

Gaby is going to have a fun weekend. They have decided she is strong enough to handle some more aggressive things to get her better. So, they are going to begin doing them today and tomorrow. I have limited knowledge of what many of these things are, but they all sound good as the end result is getting her better more quickly.

We value your continued prayers. A renal ultrasound today reminded us of something we already knew from past medical reports. Gaby has some type of mass on her kidney. At some point down the line when she is off ECMO here they will do a CT scan to decipher what exactly it is and how to treat it. I am trying to put that out of my mind for today though and think about getting her lungs healed right now. There will be plenty of time in the future to focus on kidneys and other anatomy!

Macy Day

This blog is quickly becoming Gaby focused, and possibly rightly so. But today is Macy Day at our house.

Macy had her first physical therapy appointment at our home this morning. It was great. We love Carrie the therapist working with her. Macy did wonderful doing all the exercises and activities. She also seemed to really like Carrie and want to do things with her, which is a blessing. She is so tired from that hour of working out! She is snuggling and sleeping now.

Macy is such a sweet baby, as you can see from the picture. She gives the best full-face smiles. Last week I even got her to start laughing. It is the sweetest sound. She loves to cuddle when she is tired, but she is SO busy when she is awake. She wants to sit up and see everyone and everything going on.

When her and I are at the hospital visiting sister, she is so nosy. There are many times I have to turn her around because she won't stop staring at people and it is almost rude! She wants everyone that comes into the room to talk to her, which they always do. Fussing about her outfit, her beautiul skin, her big eyes, or her long gorgeous eyelashes. She is quite the center of attention and likes it that way.

I am so thankful for Macy and the smiles she brings us each day. I am so glad God chose me to be her mommy.

I know babies aren't supposed to play Super Mario Galaxy 2, but she really loves watching it!

Status Quo

I typically like to push against the status quo with things, but with Gaby, finally having a day where she qualifies as a status quo patient is a blessing.

She continues to show slow steady improvements and we are thankful for each one.

Some of my very best friends are in Costa Rica right now. They are on a missions trip there. I am so excited for them and to see what God will do in their lives as they allow themselves to be used by Him. I am so proud of them for stepping WAY out of their comfort zones in so many ways to do something that they felt God wanted them to do. I am praying that they have an amazing week and God uses their willingness to serve to touch each person they come into contact with on their journey.

As far as little Gaby goes, she continues to make small improvements of strength. God typically speaks to me through His Word or one of you, but yesterday on my drive back from Indy He smacked me upside the head with a worship song. The song with words from youtube are at the bottom of the blog. I hope it speaks to you today as well.

He is holding Gaby's heart and life in His hands and that is all the confidence I need.

Not much different going on in Gaby's room today. Her volumes have stayed up after the lung wash yesterday. It seems to have cleared up a lot of junk and worked more long term than the bronching from last week. I am hopeful that with continued suctioning today her numbers will stay up and show that improvement.

Another fun item to add to the mix of what is going on in her body is hematuria, blood in Gaby's urine over the past couple days. They have narrowed it down to one of two things, either the ECMO circuit needs to be changed out giving us a new mechancial lung and heart or she has an enzyme deficiency. If the urine clears on its own after stopping the antibiotic they just stopped then she has that deficiency. If it continues to be red then the circuit needs changed. So, not sure how to pray on this one as either option has its risks. Thankfully, God knows and will fill in the blanks.

We got a neighbor at the hospital today. I try to give them their privacy, but it is hard to not know what is going on when the hospital staff is a-buzz about the new patient. He was born yesterday and placed on ECMO last night in the room adjacent to us. His mom, having just delivered yesterday is across the street at the Women's Hospital. She can't even be with him right now. Things here sure put life into perspective.

Be thankful to Christ for your life today, your messed up human life and your new creation eternal life, and don't waste it on the things of this world.

new update

Procedure seems to have worked, but only time will tell. He got a lot out of her lungs and her tidal volumes are now at 29. Isn't a procedure that can be repeated anytime soon. Praying that it sticks and numbers don't go back down.

one step backward

Well it was inevitable we were having so much progress and improvement that a day of small setbacks was coming. After being bronched yesterday Gaby's tidal volumes (air her lungs blow back and take in on the ventilator that indicates she can do it on her own eventually) were in the high 20s. By this morning they were at 3. So basically the bronch suctioning the ENT is doing is creating a temporary airflow fix, but not helping long term. Today they are going to try something new. In a couple hours they will fill Gaby's lungs with fluid and then suction it all out, hoping the yucky stuff comes out with the saline fluid.

Macy and I are here in Indy with Gaby for a few days and enjoying our one-on-one time together.

C3 Community

This is to thank all of our friends from Crossbridge for all they are doing for our family. Thank you is very inadequate in comparison to all that has been done and will be done, but it is all I have for now. I am continually amazed by the outpouring of generosity that you all show. Every time I turn around, something else is getting done for us. I imagine I will even forget something, there are so many things, but here goes on giving you a taste of just how great our church is...

There are people bringing us meals when we are at home. Someone goes to the grocery for us each week after getting a list of what we need. I haven't cooked a meal myself since the middle of April!

People come to visit us when we need it, but give us privacy and alone time when we need that.

Someone fixed Gabe's car because of course it broke down right now.

Someone gave us a cell phone to use because of course mine got drowned in a diaper bag and Verizon Wireless wouldn't replace it.

People are taking responsibilities off our plates. They are going on a missions trip in Gabe's place. They are making arrangements and picking up our slack when we don't even know we are leaving slack.

There are people fixing our basement which had some water issues so we don't have to worry about it.

People mow our yard, weed the garden and water the flowers which allowed the kids and I to just have a great time outside playing in the water and sunshine today. Thank you for letting me relax for a few hours and play with the kids. My crazy anal personality would have been up and busy if all those things needed to be done. It was such a gift to enjoy the outside after being gone for days.

People clean our house. Last night when I got home at 10:00 with 4 kids after being at the hospital since last Thursday the house was spotless. Thank you. I am kind of a freak about cleaning my house and to be able to have a clean house when I have no time to take care of it is such a blessing to me.

People take care of our dog when we are all gone.

We have more offers to watch our kids than we have days and times available for them to be watched. The amount of love you are all showing to our kids is the best gift of all. People are offering to rearrange their schedules and have well thought out, fun plans for keeping the kids overnight. They haven't always worked out because of us being out of town, but knowing that you are all thinking of us makes me smile. When I am in Indy and Gabe is working, the kids have so much fun with all of you. They don't even have time to miss us because you have them so busy having fun. This is a HUGE reassurance for me during this crazy time of imbalance.

The love and prayers you send Gaby's way are healing her and giving us strength. I have every confidence that my church community is leading the charge in pleading her case and praying for healing from our Savior. Nothing can show us Christ's love more than for us to know that you all have our backs IN EVERY WAY.

We are so blessed to have you in our lives and long for the day when our whole family can again worship on Sunday morning together there with you.

Laney visiting Gaby

Gaby is having a good, boring weekend. No activity in our hospital room, which we like. Slow and steady progress we are told is good, and that is what she is showing. Little slow for our liking, but we are learning patience.

We had a great weekend with friends and family enjoying our time together. There will be pics up here as soon as I can get home and do them.

The big kids are doing great at visiting Gaby and being compassionate with all the changes that are going on in our lives. We are learning so much as a family. Some things that I wish we never had to experience and learn about. But all things work together for good. Or so I want to believe.

We are enjoying our time together here in Indy. The kids are loving their new house and playing with all the toys there. We are so thankful to our friends for loaning it to us for a few days. We are able to feel like a family and that brings some stability and joy.

The big kids and Gabe are at the pool today while Gaby, Macy and I hang out here at the hospital. We are doing dinner tonight together. Tomorrow friends are coming down to do a water park and fireworks.

Gaby's health is marginally better today. Still long way to go, but left lung is beginning to clear.

We are on the mend.

Gaby is doing good. She is such a little fighter. Last night as I went off to sleep in the room down the hall I kissed Gaby goodnight and told her to behave. The little booger opened her eyes and looked at me and moved her whole body. Needless to say with all the drugs going into her little body, she should not be able to do this. But it isn't surprising that she can and is. She defies all medical sense in all other ways, so why not in this way as well.

It has become humorous with the staff here as they tease her about it. Yesterday, she slid down so far in her bed they needed to move her back up. During one point of moving a lot the nurse pushed another sedative and she started moving even more. It is as if she is saying, "I dare you to try and keep me lying here in this bed."

I am amazed at her spunk and give all glory to God for the progress she is making. He is clearing her lungs. He is giving her strength. While Gaby and the medical team here are amazing, we still give all credit to our God who is answering the prayers of many. Thank you for your prayers. When I can't speak any words in prayer, I am comforted by knowing that you all are out there interceding for Gaby.

We are planning for all of us to be together down here for the weekend. Some dear friends that live near here have offered us their home while they are traveling for the holiday. We are excited to spend some time all together, almost, as a family.

I hope that you are able to have a relaxing weekend with your family. Take advantage of the fun holiday to see the amazement and wonder in your kids.

Princess Gaby

It appears last night was a slow night...and we like slow nights.

Gaby's nurse stays in her room for her entire 12 hour shift and last night her nurse must have had some extra time on her hands. Today I found Gaby had a make-over, dolled up with a bow and a new sign that Laney will like.

Gaby's status today is basically the same as it was yesterday. Her lungs are still completely white and the xrays don't show improvement. They will do another bronc today to try to suction her lungs again. Hopefully they will be able to get more junk out and can get some air moving in there.

Today Shelley will drive down and switch me places again. We continue to try to balance being here and with our other kids. We may bring everyone down for 4th of July weekend.