December 1 Update

Thank you for the many emails and prayers sent our way for Taylor.

For those of you who didn't know, she was just briefly hospitalized (about 24 hours) for a nasty respiratory infection. Started as nasal congestion and then quickly overwhelmed her chest. After 2 days of working hard at home with her nebulizers, etc. to try to clear it, we saw her pediatrician and he had her admitted. Once at Fairfax Hospital the team quickly conferred and checked her heart and Glenn function. All looked great. Once they started her on some new meds, she bounced right back to herself and her breathing cleared within 12 hours. Wow! Only a one night stay and well worth it!!!

She came home last night and is doing much, much better. The respiratory infection was not RSV or flu, but bronchiolitis (inflammation of the small airways) and she just couldn’t clear the mucus. The oral steroids and new nebulizers really have done the trick!

However, we never seem to escape the hospital without some unusual complication and this time it was an IV infiltration. Essentially the needle slipped out of her vein when she was sleeping (babies roll around you know!) and all the fluid pumped into her left arm and puffed it up like a balloon.

Once she felt better and was home last evening crawling around, the fluid pooled and formed blisters in her hand and wrist that burst and essentially caused a burn like effect to her skin. Definitely nominate me for the “mother of the year” award. We saw her pediatrician this morning and just have to put an anti-bacterial cream on the wound and keep it covered. No small feat as Taylor figured out how to unwrap the dressing on the car ride home! Anyway, we have to go back Friday afternoon to have the wound checked and watch for infection.

All in all this is just a bump in the road. She is so tough, barely cries when dealing with this kind of crud, and is generally super happy. Every doctor and nurse who saw her (of course they all know her at Fairfax) commented on how strong she looked and her overall development and growth. She now weighs 21 pounds. Emileigh was 23 at her one year check up which for Taylor is just one week away. So much for cardiac babies being small!!!

We look forward to celebrating Taylor's first birthday on December 11. Wishing you all healthy holidays.

Love,
The Goodloes

Taylor Update - October 15, 2009

Wow! It has been a long while since I last posted an update on Taylor. Remember, no news is good news. That being said, we really appreciate all of you checking regularly and checking in with us to see how she is doing. She is doing GREAT!!! Since September 10 we have had four check-up appointments: Taylor's 9 month wellness check, a visit with her pulmonologist, a follow-up with the GI doc and today her cardiology appointment. All good news to report!!!

Taylor continues to make great strides towards developmental milestones. She now weighs 19 pounds, is crawling and talking up a storm (lots of dadas and babas, etc.). At her 6 month early intervention appointment (speech therapy) she had met all but two of her feeding goals almost 6 months ahead of schedule. Her speech development will continue to be monitored through her first birthday and then we will meet again to determine if services will continue.

The pulmonolgist saw Taylor as she was just starting with a cold - which was a good thing. He told us to keep her as healthy as we can through the winter and to keep in touch. We will see him again late in December unless something comes up before then. He feels that her lungs are still developing slowly and she is particularly susceptible to respiratory infections. He prescribed a new nebulizer treatment to use as needed. It worked wonders with her cold and congestion and she quickly cleared up in about a week - just in time for us to head to the Outer Banks with Jason's parents. We had a wonderful time on our first family vacation since Taylor was born.

Other medical updates: Taylor is no longer taking medication for reflux. Her symptoms have abated as she had moved on to solids and grown a bit. We will just use the Prevacid as needed or when she has a cough to protect her airway from getting irritated. :)

Today was the appointment with her cardiologist. No surprises!!! Her SATS were low 80's which is great for her. The Glenn is functioning just as it should and her blood flow and pressures are just what they need to be. Her growth is good and is progressing just as they would like it to. We heard that her next surgery will be when she is about 30 pounds or between the ages of 2 and 3 depending on how she is doing. No limits on activity for her and we don't need to go back till January! We may see her get a bit "bluer" as she starts to be more physically active as then the blood needed in the lower extremities will be greater and more "blue" blood will be returning to the heart. Nothing to be concerned about. She looks pink and great to us now!!!

Thank you, thank you for your support of Inova Fairfax Hospital for Women and Children - Pediatric Cardiology department and my participation in the Star Kid 8K on October 10. Thanks to your generosity we contributed $2000 to the cause and the race itself raised over $40,000!!! Wow. We were so happy to be a part of this event and look forward to it again next year. Special thanks to our friends and neighbors as well as co-workers who ran with me.

Cameron and Emileigh are doing well also. All 3 kids are in the wonderful care of our new nanny Whitney. She is wonderful with the kids and we feel very blessed to have her as a part of our family. We are currently busy with sports (Flag Football, Swimming, Soccer and Dance) and all of the other things that life brings us (work, friends, etc.).

I will send more updates when I have them. Love to all from Taylor and all the Goodloes!

Star Kid 8K Update

One month away from the 8K to benefit INOVA Health System - specifically Fairfax Hospital's Pediatric Cardiology department. Training is going really well and I am getting excited for the run. I have the support of lots of family, friends and colleagues and have formed Team Taylor.

It is not too late to sign up to run or to donate. I am hoping to raise $1500 in honor of Taylor and have a site connected to the cause with more information: http://starkid8k.kintera.org/faf/donorReg/donorPledge.asp?ievent=323606&supId=270461892

Team Taylor would love some additional runners. Sign up, come out and have a great morning on October 10 at George Mason. You can find more information about the race at:

http://www.runwashington.com/news/312/467/Star-Kid-8K-Web-Site.htm

Taylor continues to be healthy, grow and just be a joy in general! I plan to post more info once we get through a round of check-ups later this month starting with her 9 month wellness check. :) Thanks for the continued prayers! We are blessed.

August 10, 2009

Wow! It has been a few weeks since our last post. Taylor continues to do really, really well. She is growing and happy. No doctors visits (cross your fingers) for a while - at least until mid September.

We are in the process of transitioning from our summer babysitter - a wonderful college student named Genevieve - to our new full-time nanny, Whitney, over the next two weeks. Very exciting and a relief to have found such wonderful child care providers for Taylor, and Emileigh as well. Cameron is getting ready for 1st grade. Not quite excited yet, but hopefully that will come.

Taylor had speech therapy the other day and the appointment went well. We also had a physical therapy consult. Both therapists agree that she is making tremendous progress and looks amazing for all that she has been through in past 4 months or so. She is about a month behind in her physical development, but we are not too concerned. She did spend a total of a month in the hospital between the two surgeries with a solid 9 days of that time under heavy sedation. We think she is doing just great and will work with her to help her catch up.

Lately she is all smiles, especially when Cameron and Emileigh are around. We are enjoying her and so happy she is healthy. No big vacation for us this summer. Just many lazy days at the pool and lots of quality time with family and close friends.

So many of you have mentioned that you follow Taylor's blog and and are keeping up with her progress and continue to pray for her and us! THANK YOU!!! We truly believe she is a miracle and continues to thrive due to God's grace.

I am busily getting ready to open the school year but have added a new challenge to my life. I decided about two weeks ago to sign up for the Star Kids 8K on October 10 to benefit the Pediatric Cardiology department at INOVA Fairfax Hospital. I have never run a race this long and am starting to train for it - boy is it tough! Check out this site if you are interested. Star Kid 8K Web Site - Washington DC Running Report
Source: http://www.runwashington.com/

If you want to run with me, sign up and let's go!!! :)

Love to all...

July 26, 2009 - Home for 2 weeks!

Well, Taylor has been home from the hospital for two weeks and we are now 4 weeks out from her surgery. All is well here at home, if a bit hectic! But it would be that way anyway for us. :)

Taylor was released with a feeding tube on July 11, which she promptly pulled out the first night and we did not fight her to put it back in. We have worked hard with her to increase her bottle feeds and she is doing really well. She is also taking solids in small amounts again with her new favs being avocado and hummus! She gained about 6 ounces between doctor's appointments in the last 10 days and is finally over 16 pounds!

Every day she continues to get better. Her personality, vocalizations and almost all of her motor skills are back. She is still struggling to roll over which she could do before surgery, but she is working at it. She is kind of like a turtle stranded on its back when she is in her crib except she gets stuck on her belly and screams till we come get her. She is sleeping well - usually all night or at least until 4 or 5 AM when she gets hungry and then goes back to sleep till around 7.

Jason and I went back to work for part of the week last week and the majority of the week this week. My brother, sister in law and their two kids are coming Thursday and we are looking forward to some time with them this coming weekend.

Overall her follow-up appointments went very well. Pediatrician thought she looked great and doesn't need to see her (unless she's sick) till her 9 month appointment in September. The pulminologist also thought she looked fantastic, especially since he saw her in the hospital on the vent and right when she came off. He is not particularly happy that her SATs hang out in the mid to upper 70s, but is willing to live with that if the cardiologist is happy. We don't have to see him again until late September unless something changes with her breathing. She will remain on her daily nebulizer to keep her airways open and will start an asthma inhaler in August just to protect her airways as much as possible going into the fall allergy and cold season.

We had our follow-up with the cardio on Friday and he was very pleased and actually didn't have much to say - which is a GREAT thing! Her echo looked good and the Glenn is functioning just as the team hoped it would. Her blood pressure is right where it needs to be and she has good profusion. All things that make the heart doctors happy! We talked about her SATs being in the 70s and whether or not that should be a concern and the answer was NO. Basically his opinion is that she was diagnosed late, has had two major surgeries close together which drastically changed her anatomy and her body is tolerating all of the these changes extremely well and she looks fantastic. He expects that she will only get better. That does not mean her SATs will necessarily go up but as her lungs heal and she grows there is hope they will. No cause for concern unless she seems "bluer" or SATs consistenly are lower. If that is the case then we might have to take her in for a Cath to see what is going on or plan for the Fontan a bit early. I think the real telling comment was that he doesn't need to see us for 3 months - the end of October!!! I was shocked and so relieved at the same time. Right now the next surgery is not until she is 2.

The only other tidbit is that her clot seems to still be resolving itself and her left leg is a bit bluer than the right. The blood vessels will eventually work around the clot and it should dissolve. For now Taylor will stay on aspirin every other day and we will schedule an ultrasound on her leg as a follow-up.

Thank you for the continued prayers, calls, cards, emails, meals, gift cards for dinners, offers to babysit and so much more. We have been so blessed!!! Taylor is a mighty little girl and we look forward to seeing you out and about with her very soon!

Taylor is Home!!!

Praise God!!!

Taylor was discharged from the hospital on Saturday, July 11. After a long day of getting set to go - learning how to replace her feeding tube, having a pump delivered, 3 pharmacies to get her meds and nebulizers, we are finally home and all sleeping in our own beds.

Taylor is doing well and making it know that she does not want to deal with a feeding tube. We are working with her to take all of her feeds by bottle as well as oral meds. Many of the medicines she only has to be on this week to finish out. She pulled out her tube again last night and we are not going to replace it at this point unless she gets really behind on eating.

Looking forward to being out and about with Taylor soon as she gets stronger.

Love to all,
The Goodloes

July 109, 2009

Big sigh....

Still here. Taylor continues to struggle with clearing the mucus and congestion out of her upper airway. Adding an additional nebulizer treatment this evening to see if it helps. Everyone has cleared her to go home except the pulminologist. Feeding is still an issue though earlier today she took 6 ounces by bottle in two different feedings. We are trying to do it all by bottle right now to see is she has the stamina to do that. The GI doc wants us to go home on a feeding tube and gradually wean her off as her strength improves. The pulmonologist would prefer to get the tube out to see if that helps Taylor clear everything out. We are trying our best to feed her when she seems up to it. It was an exhausting afternoon for Taylor (and me and Jason), but we will keep on, keeping on.

I was pleased to hear that the orders for all the medical equipment we may need were written and being worked on by Kaiser this afternoon so hopefully there won't be any delay once we are discharged. Lots of meds to give for a few weeks and probably several nurse "weight check" visits. Jason and I will be taught how to put in the tube as well as give Taylor the shot of anti-coag med she will need for a bit longer. All things we can handle if it means getting Taylor home!!!

It is amazing what a change of environment does for her. We have walked her around and taken her to the courtyard on the pediatric floor and she LOVES the stimulation. The therapists have been very happy with how she is progressing physically and that she is starting to smile and play again. We feel that getting her home will only enhance the speed of her recovery.

Hope you enjoy a beautiful weekend! We hope to share very good news about Taylor's homecoming very, very soon. Please pray for that!

Wednesday July 8, 2009

12 days post surgery - looking great!

We are still here in the hospital...but continue to move forward, so we are trying to be patient.

Found out that Taylor has a mild urinary tract infection along with a wicked cough. Started antibiotics today. Sounds like her congestion is moving out of her chest and she is working hard to get rid of it. She is able to maintain her SATs without the assistance of oxygen and seems overall to be breathing comfortably. She continues to receive nebulizer treatments and chest/back PT to help move all the mucus up and out. Also found out that the anti-coagulant she is on was not strong enough to break up the clot in her leg. Her leg looks great, but she will continue to recieve shots twice a day until it is gone, which might continue when she heads home.

The cardiologists are very pleased and want to move her out of here as quickly as possible which right now sounds like may be this weekend. Still have to move the feeding tube back up to the stomach, tolerate it there and then move back to the bottle. The way Taylor is mouthing her toys and trying to suck on things, Jason and I don't anticipate a problem there. :)

Her incision scar looks amazing and she is already tolerating tummy time, especially to sleep. This evening she even played for a while and I saw one little smile. I was so excited that I made a big fuss which ended up making her cry.

Overall things are looking up. Keep up those prayers! We want Taylor to be completely healthy and stable so that she can enjoy being at home - and stay there!!!

I am staying with her tonight and looking forward to hearing how Cameron did in the swim meet. He was going to try to swim butterfly! :) Em is doing OK - very anxious and clingy when I leave. I keep telling her that as soon as Taylor is well I will be home. Our babysitter Genevive is wonderful and has really been helpful in keeping the kids' routine.

We have had visits this week from friends Elisabeth, Carolyn and Miriam and lots of offers to come by. Since Taylor had a little fever and nasty cough we have limited contact a bit, but now she is looking great. Looking forward to seeing Jason's sister Blaine and our nephew Jake this weekend and my aunt and grandmother later next week - hopefully at home!!!

July 9: Taylor had a GREAT night!!! No need for Oxygen and she was very feisty and played quite a bit. Had a bit of trouble settling the two hours prior to her lowered Methadone dose, but once she had that she slept peacefully even through two nebulizer treatments! She also pulled out her feeding tube for the second time and the doctors agreed to leave it up in her stomach rather than put it back down in her intestine. Way to go Taylor - you just advanced another step and made your wishes known.

More later once we hear from the doctors...

Monday July 6, 2009

Today has been a busy day for Taylor at the hospital. Seemed like everyone was catching up from the holiday weekend and checking in. She was seen by the speech therapist, OT and PT and we were given suggestions for exercises to help her get moving and also to get her back on the bottle from and off the feeding tube.

Her oxygen saturation has been steadily increasing to the upper 70s to 82 since she was started on nebulizer treatments yesterday afternoon. They have really helped with her congestion and this afternoon the pulminologist was pleased with her progress and didn't see any significant differences in her chest x ray from Friday. Good news overall...

However, she does still have the clot in her left groin area and there has been discussion about whether or not it has gotten bigger or stayed the same. The radiologist feels it has increased in size while the cardiologist feels that we can't really judge its size since it was first noticed when her central line was there and her leg has improved (reduced swelling and better color) since the line came out Friday morning. She will have a blood test later tonight to check on the level of the anti-coagulant in her system and to determine next steps for the clot issue. Jason and I feel her leg looks remarkably better but we'll wait to see what the blood work looks like. Dr. Thompson, the cardiologist who did the cath procedure on her two weeks ago feels that her body will resolve this herself and he wants to wait and see what happens.

When her blood is drawn tonight they will also do some blood cultures because Taylor has had a slight fever today (99.5-100.7). It has come down this afternoon which is encouraging but she has had a urine culture and will have her blood looked at to be safe since her white blood count has increased since it was taken on July 1. She could be fighting a virus or an infection related to the clot so the doctors want to cover all bases and rule things out. Fine with us.

On the feeding front - her tube was moved up from her intestine to her stomach and we will see overnight how she tolerates the stomach processing her food (blood pressure, heart rate, breathing, etc.) before trying her on the bottle tomorrow. The speech clinician will come back tomorrow to see how she does and make recommendations.

Taylor has been a very sleepy girl today - almost all day! She was awake for some of the morning and for about 45 minutes this afternoon. We think her body is either fighting against whatever virus she might have and/or just catching up after several restless nights. My hope is that she stays stable and comfortable through the night so I can sleep too - but we shall see what happens.

Please continue to pray for Taylor's recovery and especially for her to clear the recent hurdles we are encountering. She "looks" great!

Jason, Cam, Em and I are doing well juggling home and hospital and keeping regular family routines as much as possible. We are very grateful to our good friends the Johnsons for hosting us on 4th of July, Vicki McGorty for coordinating meals for us over the last week and into the future, our pastors for continually checking in on us and for all of your calls and emails. We will continue to keep everyone posted and hope for more positive news to share tomorrow or Wednesday.

Love,
Taylor, Amy, Jason, Cameron and Emileigh

Happy 4th!

Taylor continues to make steady progress. She was moved
from PICU to the regular pediatric floor Friday evening
and will move again to a private room later today. Yippee!!!

She still has a feeding tube and we are working with the doctors
To get approval for her to try a bottle before Monday when
She will have a speech eval. She will also have a follow up
Ultrasound on her left leg to make sure the clot is breaking up
Where her central line was. 8 Days Post surgery

The hardest part now is waiting and trying to keep her on her
Back! Every time she can she is trying to figure out how to
Roll over. Tough to do with an IV, feeding tube and wires taped
To your chest, not to mention a healing incision!

She looks great! I will try to post moe pictures soon. I am
Writing this from my blackberry as I don't have my computer
Jason is doing some activities with the kids and then will stay the night tonight.

Thanks again for your continued prayers, calls, emails, meals and help with Cameron and Emileigh. We hope to continue to be able to share good news.

LOL and Happy 4th of July!!!

July 1 and 2, 2009 Updates

6 days post surgery...

Wednesday was such a busy day that I didn’t have the chance to write and now things are moving so quickly here that it is hard to keep up.

Taylor has made great progress since yesterday afternoon. Her breathing tube was removed and she was transitioned to a high humidity nasal canula with some oxygen support (40-60%). She remained sedated because every time she woke up she struggled with her tubes and lines and seemed very agitated. However, during the night all of her drip medications were stopped and her feedings increased. This morning when we arrived she had been moved to a private room in PICU from the cardiac corner room which was wide open. Also her catheter had been removed and other monitoring devices which tracked her brain and kidney function.
Jason and I listened in on rounds this morning and the plan for the day is to continue to “deaccessorize”. This morning her arterial line was removed as well as her central line in her groin. Now she just has one regular IV line, a feeding tube and the nasal canula support. She has been awake and alert and moving around without much discomfort. Taylor is still groggy but the goal is to get her fully awake so she will not be receiving any more sedatives only pain meds when she seems to be in pain. She is also receiving some Heparin (blood thinner) because she has some swelling and a small clot in her left leg where the central line was. This does not seem to be a major concern and is expected to break up and heal on its own.

She is on some heavy meds to wean her off of the Fentanol (painkiller/sedative) including Methadone. She will be stepped down off of it over several days and may actually be sent home on it as well to finish the protocol. We have been told that this might cause her some insomnia or possibly keep her groggy and with limited appetite for a few days. Good to know!
All in all a great two days for Taylor. Her color is great and she has even started talking a bit again now that the tube is out. The doctors are pleased with her heart performance and now that her heart rate is steadily above 120 they plan to remove the pacemaker as well. Yippee!
We also met with the feeding team this morning and discussed how to transition her back to the bottle and solids. Once she is off the nasal canula she can start to take a bottle. A speech consult has been requested but since Taylor already receives speech through early intervention and Jason and I have already been dealing with her feeding issues (thickened formula and food) the team wrote in her chart to consult with us about her needs. Yippee! That means she won’t be held back from taking a bottle until Monday when the speech clinician can see her. Everyone here seems to be gearing up for the holiday weekend (which starts tomorrow!) and we are hoping that we are moving closer to the door – maybe to “step down care” on the regular pediatric ward.

Not sure when this will get posted as there is no wireless connection today at the hospital…so no email access, etc.

We look forward to sharing more news soon. As always, thank you for your continued prayers for Taylor's recovery.

Tuesday June 30, 2009

Taylor continues to make forward progress, ever so slowly. Today she was taken off the pacemaker (then put back on) to keep her heart rate steady. The purpose is just to take the pressure off the heart as it heals and she isn't quite ready to maintain a steady heart rate around 120 all on her own just yet. There is a possiblity she will need a pacemaker for a while which certainly isn't a big deal compared with everything else she has had going on! :)

The doctors also turned both the rate and the pressure down on the ventilator in preparation to take her off (possibly overnight) tomorrow. Her airways look good according to the CT scan results. Jason and I actually got to look at the images today along with her pulmonologist and he was able to explain to us her issue. Essentially her airways to the lungs were being pinched off by her enlarged pulmonary artery prior the surgery in February. The right side has recovered very well and is open and looking good, while the left is still a bit "squished" as the doctor told us today. However, this does not seem to be impeding air flow and is still an improvement from February. It will just take time to fully outgrow.

The nurses at the Fairfax PICU continue to be amazing and take lots of time to answer all of our questions about medication, etc. We learned today that Taylor will move through a protocol of being weaned off of the sedation and painkiller meds once she is off the ventilator. She has been on Fentanol and Versed, both very strong drugs that require weaning so that she doesn't experience withdrawl. This will involve methadone and likely valium. Wow!!!! However, as it was explained to us, babies don't have the psychological addiction to the meds so it is just a matter of stepping them down over several days to help the body flush them out. Taylor wasn't on all of these heavy meds last time, so this part is new to us.

Tomorrow (Wednesday) we plan to be at the hospital for rounds - sometime around 10 AM. We actually are able to listen in as the doctors share updates. The surgeon and cardiologists round at 7:30, so we will miss them, but we get all the updates when we come in from the nurses. If Taylor is off the vent and awake one of us will likely stay at least into the evening if not overnight.

Cameron has another swim meet tomorrow night and is swimming freestyle and butterfly. I am amazed at his confidence! Unfortunately, butterfly is the last stroke of the meet so it will be a long event. We are very proud that he wants to give it a try! Em is going to stay with a friend tomorrow evening so that one of us can be with Cam and the other with Taylor.

We will keep you posted on visiting. Today Christy Ryder came to visit with her daughter Caroline and Jason and I spent some time with them in the family waiting room while Taylor slept. Once she is awake her visitors will be limited but we would definitely love to see you! Just give one of us a call or shoot us an email and we will let you know a good time.

Thank you for continuing to lift Taylor up in prayer. God is really working in our lives and especially hers!

More tomorrow...

Monday, June 29, 2009

3 Days Post Surgery - 6/29

Pre-Surgery - 6/26

Jason and I spent about five hours at the hospital today talking with Taylor's doctors and nurses. She had a good night and continues to show progress. She has drained off a lot of fluid since yesterday and looked really good this morning. The doctors also decided to start turning down her vent settings to start "weaning" her this afternoon after the CT scan.

The CT scan showed that her right lung airways are a bit bigger than her left, thus the discrepancy in moving air through the lungs that they have been seeing. However, Dr. Osbourne, her pulminologist, feels that the scans did not show any deterioration or worsening since the ones he took in February prior to the last surgery. Since no obstruction was found and blood flow to the lungs is good, he feels that it is just going to take a bit more time for her body to adjust to coming off heart lung bypass and the swelling in her chest. Overall flow is good as well. He continues to feel that as she grows and her airways further develop her body will adjust itself and essentially she will grow out of this issue. Right now it makes sense to continue to keep her sedated and let her body heal slowly rather than push to get her off the vent. It sounded like she would probably be "resting" for a few more days in order to make sure that the removal of the breathing tube is successful.

The only other change today was the location of her central line. It was moved from her sub-clavical area (upper chest) to down in her groin. No real issues there.

All in all a good, uneventful day. We will check in with the nurses tonight and then head back over to PICU tomorrow morning. We tooks some pictures as well to document all of the lines she is currently hooked to. It is helpful to note the progression as drips, lines and breathing tubes come off. We know for some this picture is very hard to look at, but all in all she looks really good and her incision is healing nicely as well.

Thank you to the Weerens for the delicious dinner this evening. We really appreciate the care and help of our neighbors!

Cam had a great first day at Rec PAC and Em enjoyed spending time at the pool with our wonderful babysitter Genevive.

Please keep up the prayers!!! More tomorrow...

Love,

The Goodloes

June 28, 2009 Update

Taylor has had a fairly quiet weekend at the PICU and Jason and I have spent quite a bit of time at home with Cameron and Emileigh. Taylor remains sedated and breathing with the assistance of the ventilator. She has experienced a few "bumps in the road" but the doctors shared today that they are seeing slow, positive progress and they are encouraged.

Friday night was not as quiet as the team had hoped it would be. Taylor looked great when we left - good Oxygen saturation and overall heart function. As the evening progressed she experienced several episodes of heart arythmias as well as a decrease in pressure and oxygen saturation. She stabilized overnight with the aid of medication and change to her vent settings.

I went to the hospital following Cameron's first Saturday swim meet! He placed second in freestyle and third in backstroke for the 6 and under age group. We are so proud of him and happy that we got to see him swim. I arrived at Fairfax just as the doctors were completing rounds and was able to talk to Dr. Shen, Taylor's surgeon, as well as her nurse for quite a while. Dr. Shen shared that he was pleased with her the way her heart was responding to the sugery but was still a bit concerned about her low oxygen saturation - at that point she was down in the 60s. However, he stated that he felt things were moving in a positive direction and that the team would work together to figure out the appropriate vent settings to best support her breathing. The overall concern continued to the be her small airway and the reaction to the new blood flow. As the day progressed the doctors changed the ventilator settings and took her off of the mixture of helium and oxygen and switched to nitric oxide. We understand now that both are a bit easier to move through the airways than pure oxygen/nitrogen mix (like room air). Anyway, her sats cam back up to the high 70s/low 80s and the doctors were please. Taylor had a stable Saturday night.

This morning, Jason and I both went to the hospital and saw Taylor. She looked a bit more puffy than we had noticed before and the team shared that they were working to increase her urine output and draw off fluid which seemed to be helping with her breathing as well. Overall she looked really good, sats were being maintained above 75 and her pressure was good. She had an echocardiogram (heart ultrasound) to see how the repair looked and how the blood was flowing. The cardiologist shared that the repair was functioning very well and blood flow was excellent! Great news. However, she still seems to be having a bit of trouble with her airways and tomorrow a CT Scan will be done to see how the airways are moving air and blood. Overall lung function is good and all of her other numbers are good so the doctors are a bit perplexed. However, they let us know that they feel she is moving in the right direction if every so slowly. :)

Jason's parents went home today. We really appreciated their care of Cam and Em for the past four days. We are going to take one day at a time and right now since Taylor doesn't need us at the hospital we are spending as much time with them as we can.

We appreciate the continued prayers and emails of support. We are all praying for continued progress for Taylor and an answer to her airway mystery. One theory is that once more fluid comes off and the vent is removed, she will actually improve. We will have to wait and see what the CT shows tomorrow...

Thanks again for all of the love and support you have shown our family. Your notes really give us strength, encoragement and a positive outlook! LOL!

Taylor is Out of Surgery - June 26, 2009

Taylor came out of the surgery which began around 9 at about 2:30 today. We met with Dr. Shen, her surgeon, in the PICU family room at about 3 PM. He shared with us that the surgery went well and all that he had planned to do was accomplished. As he shared with us yesterday, her lung resistance is still a bit higher than he would like to see but he noted improvement throughout the surgery. It is critical for the lung resistance to be low so that the heart does not need to pump against the lungs. The goal is for the blood to flow passively through the lungs. He advised us that the doctors will be watching her pressures and Oxygen sats carefully and if needed give her medication to "relax" the lungs a bit. He also shared that the hope is to get her off the ventilator as soon as she seems ready because it "pushes" air into the lungs and it is much better for her to be breathing on her own. Right now he told us we will wait and see how she responds and just go from there.

All in all it has been a long, exhausting day. We have had the support of our pastors Barbara and Tom here today as well as Lindy and Genevive Nevin who have been care providers for Taylor, Cameron and Emileigh. Thank you for the emails and posts on Facebook sharing support and prayers. We have been really touched by your notes to us and are boosted knowing that Taylor is own your hearts as well.

We ask that you continue to pray for strength for Taylor as she recovers and that her body does what the doctor's hope for it to do - heal itself and adjust to the new blood routing through her heart into her lungs to her body.

Jason and I plan to stay here at Fairfax till Taylor is settled, talk to the doctors and then be home for the night. Cameron is swimming freestyle and backstroke tomorrow morning in the Franklin Glen swim meet and we want to be sure to be with him to show our encouragement.

We will continue to post information as we have it. We know that you understand that we probably wil not spend a lot of time on the phone over the next few days. Feel free to email us at goodloe@evolvetech.com or on Facebook.

Please pass this blog on to anyone who you feel will be interested.

Love,
The Goodloes

Taylor Update - June 25, 2009

We checked into Fairfax this morning at 6 and after Taylor was prepped and readied for the procedure, she was taken back at about 8. We were able to be with her in the procedure room while the anesthesiologist sedated her. We met her back in the recovery room at about 10:15 and then met with Dr. Shen, her surgeon.

Surgery will proceed as planned tomorrow morning. She is the first case and will be taken down to the OR around 7 AM. We are now in her room on the pediatrics floor and she is sleeping peacefully in her crib after having gulped down an 8 ounce bottle! She wasn't able to eat after 2 AM, so she was definitely hungry!!!

Taylor will have several parts of her cardiovascular anatomy changed tomorrow. This is the first
part of the Fontan. From Wikipedia:

The Fontan is usually done as a two staged repair.
The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply. The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.

At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated), and the ventricle is still doing more work than expected. Therefore most patients are referred for another surgery.


We will cross that bridge when we come to it when she is older. Dr. Shen told us that he will also enlarge her ASD (atrial septal defect) or hole in the septum between the atria to allow for the oxygen rich and poor blood to mix more easily and reduce the load on her heart in general. While he feels that she should do very well, he did review all of the possible complications. We are thinking positive and praying that her surgery goes just as expected and without issues.

We greatly appreciate the ongoing prayers and support. Please continue to pray for Taylor and our family as we navigate the coming days and weeks of her surgery and recovery.

An update will be posted tomorrow as well!

June 4, 2009

Hi!

Thanks to all of you who have been checking regularly and sorry we haven't posted anything recently. Remember, no news is GOOD news!!! Taylor has continued to grow and thrive and most importantly stay healthy!!! She is now over 14 pounds and actually a bit chubby. She has beautiful red hair as well. Who knew?

Right now the plan is to head into Fairfax Hospital on June 25th bright and early. Taylor is scheduled to have a catheterization procedure to measure the pressures in and around her heart. The information gathered from this procedure will be used to help guide the surgery scheduled for the following morning, June 26. We will meet with the cardiologist and her surgeon following the catheterization and will know more at that time. Please pray that Taylor is ready for surgery and that all looks as the doctors expect. We are hoping and praying for a reasonably short hospital stay and then plan to spend time at home in July helping Taylor recuperate.

Cam and Em will be involved in swim team and camps and a hopefully typical summer fun stuff!

Please continue to check here for more information. While we are in the hospital, we will try to post daily updates here and on Facebook. You can always email us directly at goodloe@evolvetech.com. Please email us if you are interested in stopping by the hospital. Visitors are good for me and Jason but not always allowed for Taylor. We would be happy to meet you for coffee or a walk!

LOL, from the Goodloes

Spring Break Update

I realized this morning that I have not updated Taylor's Blog in about two weeks and many of you have been asking how she is doing.

The short answer is GREAT!!! We had her 4 month wellness check yesterday and she weighed a whopping 11 pounds 8 ounces. Though she is still a little peanut she is getting some chubby cheeks and has actually gained 2 full pounds since her release from the hospital 5 weeks ago. We are thrilled!!! The pediatrician and I are hoping that we won't see each other again till June for her 6 month check!

Taylor also weathered her first virus during the last week or so. It seems that she picked up a cold/congestion virus from Cameron and Emileigh. Jason had to take her to the ER at Fairfax a week ago because her temperature was above 101.3. The doctors were extremely attentive and once Jason assured them that the ONLY reason he was there was due to the fever (not O SATs in the low 80's or blueish tint around the mouth - normal for Taylor), they released her to come home. Thankfully RSV, Flu, Urinary tract infection and blood infection were all ruled out! After 2 follow ups with her pediatrician and 3 shots of antibiotics she was in the clear and fever free. We now know that this will be the drill if she spikes a fever again. She has been on antibiotics just in case and bounced right back to her happy self.

Good news on the sleeping front too...no she is not yet sleeping through the entire night (We wish!). Taylor is out of the swing in our room and back in her room in her crib. We have found that she rests very comfortably on her stomach and she is stretching out the times between her night feedings nicely. She has fallen into a 7 PM bedtime routine and then typically gets up once or twice a night for a bottle. She is definitely hungry when she wakes up during the night! She will down a bottle in about 10 minutes and then head right back to sleep. We can live with that!!!

We have a date for the next surgery. On June 25 she will go to Fairfax for a catheteritization procedure to measure the pressures in her heart and blood vessels. If all goes as planned she will have her second open heart surgery the morning of June 26. We will keep you posted on this!

This is the last week for a while that Jason and I will be alternating days at home and work. We have been blessed to find two wonderful woman to care for Taylor in our home from now until the end of school. We are thrilled to know that she will be in good hands while we both are at work.

Thank you for the continued cards, calls, meals, prayers and support. We feel extremely blessed. Please keep all of us in your prayers.

The entire Goodloe family wishes you a joyous Easter. Love to all!

3/26 Good week so far...

Taylor has had a very good week thus far. Her follow up with the pulmonologist went very well and he doesn't need to see her again until late May unless she gets a bad cold or we have a concern. Yea! She has also it the 11 pound mark - finally. She is gaining almost an ounce an day, which we are thrilled about. Still only about 10th percentile for weight but gaining well. :)

We are in the process of interviewing child care candidates to take care of her in our home from now until June. We have been blessed by referrals from friends and our church and are very hopeful we will have someone special to take care of her very soon. I plan to be back to work full time starting the week of April 13.

Thank you to the Franklin Glen community and mom's co-op for taking care of meals for us twice a week. We are so appreciative! Thank you also to the Oak Hill PTA for the gift of meals from Dinner Done. We are very well taken care of!!!

Please continue to keep all of us in your prayers and especially for Taylor's continued health and growth.

March 20, 2009 Update

Hi all,

We went to see a Pulmonologist (lung specialist) yesterday. Taylor has had some funny breathing habits since before the surgery that turned out to be a result of her very enlarged pulmonary artery pressing on her airway. As a result, her airway is a little "floppy" or as the Dr. described it yesterday - it is like a trash can with one of those lids that opens and closes with a foot pedal. Hers isn't always closed when it needs to be like when she is feeding and so she sometimes aspirates her formula. This causes her to sound really congested and to cough at times to try to clear it. The floppiness also causes the trachea to collapse somewhat when she is on her back. When she is relaxed and happy, this is not a problem. But when she is agitated or crying it can cause her significant difficulty.

So...first he wanted to send us to the hospital to have her monitored. Jason and I were not pleased with this option knowing that nothing would be resolved before Monday and we would be in hospital limbo again having to farm out Cam and Em and not sleeping. Instead our doctors all consulted (cardiologist, pulmonologist and pediatrician) and decided that if we could watch Taylor's breathing patterns here at home, especially when she is sleeping, to determine if her Oxygen saturation is staying where it needs to (80-89) and work hard to keep her very calm we could have her at home. We are going to be supplied with a pulse-ox machine to monitor her heart rate and SATs(oxygen saturation) as well as bottled oxygen for if she seems to experience distress and doesn't come out of it for several minutes. This can definitely be avoided by not letting her cry for too long or get really upset. When she does get angry she turns a lovely shade of purple. Jason and I have gotten used to it, but it is not something the doctors want her to experience often.

I had this little monkey so well "trained" before surgery - putting herself to sleep and sleeping through the night - just like the other two. Since we came home from the hospital we have been trying to get her back into her routine but she is a different kid now! At the moment she HATES being put down to sleep in her crib. Even if she is fast asleep in our arms or a bouncy seat, etc. and you move her to the crib, within 5 minutes she is wailing! Not fun, especially in the middle of the night. Jason and I spent two hours trying to lull her to sleep the other night. This is not conducive to working during the day or spending quality time with Cameron and Emileigh. Wednesday night we moved the swing to our room and let her sleep in it out of desperation and she slept really well!!! When I explained this to the doctor and asked if I should be letting her "cry it out" he gave us permission to let her sleep wherever she is most comfortable - swing, carseat, crib - and to keep her happy! So that is what we are doing. She had a great night last night and is a much happier kiddo today - and we all slept.

We also are now using a thickener for her formula which should help her to avoid inhaling it as she gulps it down. We are already seeing positive results and are looking forward to our follow up appointment Tuesday.

This weekend we are going to go an buy a newer, quiter swing for her and let Cam and Em help pick it out. So much for following the "rules" for an infant. We have learned quickly with Taylor that she makes her own rules!!! :) We can live with that as long as it keeps her healthy.

Here's hoping for a restful weekend... Thank you for the continued prayers!!!

March 17, 2009

Happy St. Patty's Day!

Many people have emailed in the last few days asking how Taylor has been doing at home and how the whole family is adjusting. No news is good news...but I thought I'd post an update as well.

Overall things are going very well. We are still not getting much sleep because Taylor eats about half of what she did at each feeding prior to surgery, and much more often (including at night). She seems to be feeling better and better each day which is very promising. She had good check-ups with both her regular pediatrician and the cardiologist this week. The cardiologist felt that the first surgery was successful and that everything was just where it should be and on track for the second surgery in June/July. He referred us to a pulminologist to keep closer tabs on her airway recovery as well. We should have that appointment in the next few weeks.

We are looking forward to the end of cold/flu season with the approach of spring and the opportunity to get her outside. We will have to be very careful about being around large groups of people/kids and anyone who is sick as she will continue to be very susceptible to illness, but we won't have to live in a "bubble" of being home as the warm weather approaches.

Cameron and Emileigh seem to be doing OK, though Cam has been a bit more quiet and irritable lately. We are trying very hard to spend as much time with them as we can and also return to "normal" interaction for them with their baby sister. Since they both have had stuffed noses and coughs over the last week the return to normal interaction hasn't been as swift as any of us would like.

We continue to appreciate the calls, cards and offers of meals and help. We are learning very quickly, especially as tired as we are, to say yes to these offers. Thank you!!!

Please keep Taylor and our whole family on your prayer lists. Please pray for continued progress for Taylor, as well as patience, strength and sleep for the rest of us.

Hurray, she's home!!!

Taylor was released from the hospital this morning - March 8. She moved out of the PICU Friday evening and Jason stayed with her all through the weekend. He was determined to make sure she was taking all of her feeds by bottle so we could be released. He was succussful!!! Her cardiologist and surgeon saw her today and said it was time to go!!! Wow!!! I had no idea until I arrived at Fairfax this morning after church with Cam and Em in tow and all my stuff to stay tonight and on into the week if needed. Jason surprised us with the thrilling news. He is now going to get some well-deserved and needed rest.

We have a follow up appointment with her pediatrician and cardiologist later this week. Our main job now is to make sure she eats well, gains weight, and stays healthy!!! The doctors are planning to schedule surgery #2 for the end of June.

Again, many thanks for your continued prayers and support. Please keep Taylor and our family in your prayers as we move on to the next phase of this process. Emileigh was singing "It is a great day to serve the Lord" on our way home from the hospital this afternoon. I told her that I couldn't agree more!. God has truly worked in our lives over the past two weeks and I know he will continue to hold Taylor in his hands.

Love to all of you and your families.

Friday March 6 Update

Taylor continues to make good progress. Today she took almost a 3 oz bottle from Jason! That is a giant step in the right direction!!! She has to get back up to 24 oz in 24 hours by mouth. Anything that she doesn't finish right now will be added to her feeding tube over the next several days.

Cameron and Emileigh ask daily how Tay is doing and when they can come visit again. We hope to have them here this weekend and be moving closer to the door next week!!!

Jason is going to stay at the hospital tonight so that I can sleep at home. Not much sleep happened in the PICU last night. Taylor slept, but not me!!! We hope to be moved to the regular pediatric floor later today where it is a bit quieter.

Thanks for the yummy food that keeps coming our way, as well as visits from friends at the hospital. We really appreciate all you continue to do for our family.

Please keep praying for all of the wonderful kids here in the PICU and also for Taylor's healthy return home soon.

Love to all...

March 4, 2009

Today Taylor is five days post-surgery and she is looking and acting more like the baby we took to the hospital last Monday. Today her central line was removed and the pressure on her nasal was turned all the way down to 1. Yippee. Since she is breathing room oxygen, the doctors are planning to remove the nasal canula either tonight or in the morning.

Taylor was also evaluated by the OT, PT and speach therapist today. This is all typical for "cardiac kids". I cannot express how impressed I am with the level of care and communication that the Pediatric Cardiac team at Fairfax provides. The care is amazingly comprehensive. The physical and occupational therapists were happy with Taylor's responsiveness and motor skills for her age and condition. They will work with us until she is discharged and will follow her if she demonstrates any delays. Many kids with surgery like hers show some delays in meeting milestones due to the trauma of surgery, recovery time, bed time, etc. The early intervention here is amazing!!!

The speech therapist evaluated Taylor's sucking, swallowing and observed her bottle feeding this afternoon. She is being allowed to slowly return to the the bottle. I have never seen Taylor suck down an ounce of formula so fast!!! I think by Friday she will be off the feeding tube and totally on the bottle if she continues to respond as well as she did today.

All of these evaluations are necessary before Taylor "graduates" out of the PICU. I like how the doctors are taking it slow with weaning her off the breathing support just to be on the safe side. They are very happy with her progress and how her heart and lungs are performing. Yay!!!

Cameron and Emileigh visited Taylor today as well. After meeting with the Child Life Specialist who showed them pictures of the PICU and talked about all that they would see, they were very excited to see and touch her. Emileigh even drew several pictures for Taylor's room that are now taped to her crib. Our good friend Dave Gillum also stopped in to see us today. Thank you for taking the time to come by.

I have met several other families of kids in the PICU. Two have really stood out - one little girl (a week old) has had the same surgery as Taylor but doesn't seem to be responding as quickly. I talked to another mom today whose 15 day old son now needs a heart transplant. Please add these families to your prayers as you continue to pray for Taylor's recovery.

Thank you to the Brennan family for providing dinner for us this evening and for the wonderful get well gifts for Taylor. We are truly grateful for our friends and neighbors in the Franklin Glen community who are taking care of meals for us, letting Belle out, providing parking passes and meal cards for the hospital. Thank you all!!!

I hope to post some pictures later this week so you can see Taylor's progress.

March 3 - Good Day

Taylor had a good day today. She started to de-accessorize as the nurses call it. Her arterial line came out, she is now off the CPAP and on to a high humidity nasal cannula. We could actually see her little face again. Two of her IV lines were taken out as well and she is off all sedation and pain meds. She had a little Tylenol with Codeine earlier this evening to help her relax because even though she is receiving formula through a feeding tube, her tummy doesn't feel full and she keeps looking for a bottle. The hope is that once the pressure in her nasal is reduced a bit more, she can start bottle feeding again. We are hoping that will happen tomorrow.

I was with her all day and saw her personality coming back. No smiles yet...I don't think she trusts anyone who comes near her bedside right now and I don't blame her. She was very alert and active today as well.

The doctors are very pleased with her progress, but are watching her closely as they don't want her to cause any more drama like she did Saturday! We are thrilled with the steady, slow progress.

Thanks to Meghan Lamm who kept all of us fed through the weekend as well as tonight. Loved the Enchiladas!!

Thanks for the continued prayers, emails and cards. Let's keep praying for daily improvement!

Monday, March 2

This afternoon Taylor's breathing tube was removed and she is currently breathing with the aid of a CPAP device (Constant Positive Air Pressure). The purpose of the CPAP is to maintain the pressure in her airway as she breathes to combat any "floppiness" caused by the previous pressure of the enlarged blood vessels. She was awake and alert and a bit annoyed with all of the various tubes, etc. this afternoon. Tonight the team plans to try to lower the amount of pressure she is receiving to see how she adapts. She is still on a feeding tube and we hope she will get to resume feeds through the tube later tonight as well. Right now they don't want her to get too much air in her tummy while eating and on the CPAP because that could make her stomach upset. She continues to receive IV fluids to keep her belly somewhat full and her hydrated.

Overall a good day of progress. Please keep praying for the healing of her airway as this is the significant hurdle she will need to clear in order to come out of the PICU and eventually home.

We had a delicious meal from the McConnells tonight with plenty of leftovers for lunch at the hospital tomorrow. Cameron and Emileigh enjoyed a fun filled snow day with their best buds, Sam and Grace Hilburger. Thank you!!!

Jason is going to try to go into the office for a few hours tomorrow and I will be with Taylor at Fairfax. I know the kids are hoping for another snow day...

Surgery Summary and Recovery Day 1 - 2/28

Taylor had pulmonary band surgery on Friday, 2/27 first thing. The surgery went very well - just as the cardiac surgeon expected and the heart is performing well. The real trick to this surgery is getting Taylor's breathing under control and "relaxing" the lungs.

Friday evening I stayed with Taylor until the doctors removed her breathing tube and had her breathing on her own. She was doing well with some oxygen assistance. Jason and I heeded the doctor's advice and headed home to sleep knowing Taylor was in great care in the Pediatric Intensive Care Unit. I checked on her via phone twice and she was doing well.

Just after I called the hospital Saturday morning to inquire on how she was doing, Taylor started having some significant breathing difficulties. Jason and I were called to the hospital. I really didn't know what to expect to see when I arrived and prepared myself for the worst. Thankfully, what I saw was our little fighter very upset and struggling with the nasal canula trying to breath, with her right fist in the air. However, since she was in such distress and her breathing was not what the doctors wanted to see, they reinserted her breathing tube and sedated her.

After the team conferred a new plan was developed. They felt that they learned quite a bit about Taylor's respiratory issues from today's episode and decided to let her rest and recover more from her surgery throughout the weekend. She is currently sedated, resting comfortably and breathing with assistance. She has received steroids to help her airway relax and to alleviate any swelling. A feeding tube was inserted since she cannot bottle feed right now and they want to keep her strength and weight up.

On Monday they will try to remove the tube again and treat Taylor with a mixture of Helium and Oxygen - apparently this is easier on the lungs. Because Taylor's pulmonary artery has been so enlarged, her aorta has been pressed against her airway and is continuing to cause breathing difficulties. She also has some trachialmalasia - or a "floppy airway" which she will outgrow. We had been told by the doctors that they were not sure how quickly she would respond once the band was in place and how the airway would react. It is going to be several days of trial and error to get her breathing comfortably on her own.

We are grateful for all of the prayers, phone calls, emails, food, child care help, etc. Thank you for understanding when we can't call you back or respond immediately. We hope that you will visit the blog often for updates on Taylor. Remember that when there isn't any new news that is not a bad thing! :) We are looking for slow and steady progress over the next several days and weeks so that Taylor can come home and continue to recuperate and prepare for her next surgery this summer.

Prayer request: Strength for Taylor to master breathing without the tube and to be comfortable. Continued progress!!!

Welcome to our Blog For Taylor

Hi. Welcome to our blog for Taylor - Keeping Tabs on Taylor. We hope this will help us to keep all of our friends and family updated on Taylor's progress with her surgeries and health.

This week (it is only Wednesday) has been a whirlwind of information and activity since our initial appointment with the cardiologist on Monday afternoon, to admission to Fairfax Hospital, to a surgery date set for first thing on Friday (2/27) morning.

We greatly appreciate the outpouring of support, love, prayers and offers of assistance we have received. We are working on getting organized and will gratefully take you up on your genorousity very soon.

To explain Taylor's diagnosis as simply as possible: She has three working chambers of her heart - the right ventricle is underdeveloped and essentially non-functional. Her "great veins", the largest blood vessels are connected in the wrong place - to the one functioning ventricle. Her pulminary artery is significantly enlarged, as much of her blood is heading to the lungs. This is putting a lot of stress on her lungs and causing her some breathing problems. If you want to do some research look up congenital heart defects or disease and look up tricuspid atresia. You will likely see a multi-step surgical repair plan starting with a Pulminary Band procedure. Taylor is having that Friday.

The goal of the Pulminary Band surgery is to lessen the pressure to the lungs from the enlarged artery and allow the lungs to stop working so hard due to excess blood flow. Once the lungs are relaxed and the blood vessels back to normal, Taylor will undergo a second surgery to redirect blood flow in and out of her heart. The scheduling of this surgery will completely depend on how her lungs respond and how quickly the pressure is lessened - likely months from now.

The doctors here are amazing, take a lot of time with us and are confident in their work. We feel blessed to have their attention and to have access to such fantastic care for our baby girl.