We do not really have an update but this is what we know so far. The only place in the nation that does infant transplant is in Houston, TX, this is where the list of scenarios comes in. Amanda and I have been talking about every possible option to try to plan for this, if that is even possible. All of Eden's medical information was sent to Houston yesterday, Monday. The transplant team will meet to look over her chart and information to see "if she is a good candidate." This is extremely nerve raking. It’s Eden!! how can she not be a good candidate, but it is more complicated than that. Amanda and I are also judged if we can even handle this, give all of her meds in the future, bring her down for follow-up, etc. The transplant team will meet on Wednesday the 9th, and we will find out after, we are not sure the time frame of when we will find out but we will share the information when we find out. The video below was a suggestion from one of our doctors, he said that we should send a picture or a video of Eden so that the transplant team can know Eden Hedin not Eden Hedin patient #12345……
You many have to paste the link into a new window.
http://www.youtube.com/watch?v=9pgWNFL6AzQ
Tuesday, March 8, 2011
Thursday, March 3, 2011
A big day
Actual Age: 7 months
Adjusted Age: 4 months
Eden had her cardiac catherization today. She tolerated it OK, she had to be given a lot of sedation but overall things went very well. The results however were not good. We hoped and prayed that her pressures from her pulmonary hypertension wouldn't be too bad- they were bad, really bad. On a scale from 1 to 25 (25 being the worst) her score was 23.6. This means that our little girl is extremely critical. There are no other options for her but a lung transplant. This is a very scary endeavor and we are terrified for her. We will find out more information soon, but for now please PRAY that Eden is a candidate for the transplant and that she can be stable until she is ready for transplant.
Thank you all for praying for her today.
Adjusted Age: 4 months
Eden had her cardiac catherization today. She tolerated it OK, she had to be given a lot of sedation but overall things went very well. The results however were not good. We hoped and prayed that her pressures from her pulmonary hypertension wouldn't be too bad- they were bad, really bad. On a scale from 1 to 25 (25 being the worst) her score was 23.6. This means that our little girl is extremely critical. There are no other options for her but a lung transplant. This is a very scary endeavor and we are terrified for her. We will find out more information soon, but for now please PRAY that Eden is a candidate for the transplant and that she can be stable until she is ready for transplant.
Thank you all for praying for her today.
Wednesday, March 2, 2011
7 Months Today!!! 200 ++ days (PICS!!)
Sorry for the quality of the pics, we are still working on fixing the computer.
1st: All of Eden friends came to visit... her Piglet, Snowman, Charlie (seahorse) Lily (crab)and Max (fish)
2nd: Reagan hanging with my "Ole" sock monkey from when I was a kid.
4th: Eden's blond hair leading in the "NICU Hair Growing Contest"
5th: Reagan hanging out in her big girl chair.
Today, March 2nd my wonderful daughters Reagan and Eden are 7 months old. This is the second time everyone had heard from me. I only post when we hit a “milestone”, so since we hit the 200 day mark (actually on the 17th of Feb) I thought it was time for me post again.
My last post was around the 100 day mark. I really wish I wasn’t writing this right now because we are at 200 + days, will you probably hear from me at the 300 day mark….. Yes :(.
Has the journey gotten easier, no. Has the worrying ended, no. Are we in much better place, no. Is it frustrating, yes. Are we at a breaking point, like 5 months ago! Are we about to give up, NEVER!!!!! I am not going to sugar coat this. Both Amanda and I are so scared for Eden. We take 2 steps forward and then 3 steps back. She is a very sick girl. We continue try to figure out what the best plan of care is for her. Tomorrow, Thursday, she has her cardiac catheterization; this will help establish a base line of where she is and what the plan is. Do we need more time, how severe is it, it being her pulmonary hypertension, or are we heading down a more severe path…… like transplant. I don’t like to think that way because I know that God is watching over her he is not going to take her down that path. Since Monday, she has been doing much better. She is back on a Fentanyl drip. We know that she is going to be addicted but we can deal with that later. She is in much lower O2, and is having much better days.
Reagan has been sleeping like a rock star! She has been doing great at home. She did have to make 2 trips to the ER in her first week and spend 3 days in ICC because her feeding tube was clogged but “Hey that is normal right??” I guess it is all in perspective. She also sleeps about 10-12 hours a night, just an occasional diaper change so that has been great.
Amanda never ceases to amaze me with how much she can handle. She is amazing and she is the real strength through all of this. She is definitely showing her talents that she would have made a great doctor and will hopefully guide our girls in the future in the medical field (yep, already planned out for them).
Thank you to everyone for all of continuing prayers but we REALLY need prayer and great thoughts right now. I guess you will hear from me in about 90-100 more days.
Scott
Sunday, February 27, 2011
What a week
Actual Age: 31 weeks
Adjusted Age: 19 weeks
Our faith has truly been tested this week. Eden is definitely considered unstable right now. She had a few episodes this week which required that she be bagged and her O2 needs have been 100% or more. She is touchy and cannot handle even the slightest stimulation. She had a complete workup for infection and everything came back negative. We believe that this horrible pulmonary hypertension is rearing its ugly head. She blows iv's once a day so she's having a more permanent line put in today. Her pain medication is at a max and she is sleepy most of the time. We have decided to move forward with the cardiac catherization on Thursday which should give us some additional information about her PH and how severe it is and how it will respond to medications. Please pray that this goes well and that we can get her to a stable point. We are very worried about her and hate to see our sweet little girl in pain.
Reagan is at home and doing well. Her g-tube feedings are challenging as we need to watch her closely to make sure she doesn't aspirate if she spits up. Her little tummy isn't used to having that much milk/formula so its just something that we have to work through.
Adjusted Age: 19 weeks
Our faith has truly been tested this week. Eden is definitely considered unstable right now. She had a few episodes this week which required that she be bagged and her O2 needs have been 100% or more. She is touchy and cannot handle even the slightest stimulation. She had a complete workup for infection and everything came back negative. We believe that this horrible pulmonary hypertension is rearing its ugly head. She blows iv's once a day so she's having a more permanent line put in today. Her pain medication is at a max and she is sleepy most of the time. We have decided to move forward with the cardiac catherization on Thursday which should give us some additional information about her PH and how severe it is and how it will respond to medications. Please pray that this goes well and that we can get her to a stable point. We are very worried about her and hate to see our sweet little girl in pain.
Reagan is at home and doing well. Her g-tube feedings are challenging as we need to watch her closely to make sure she doesn't aspirate if she spits up. Her little tummy isn't used to having that much milk/formula so its just something that we have to work through.
Thursday, February 17, 2011
Our first trip to the ER
Actual Age: 29 weeks
Adjusted Age: 17 weeks
We discovered early yesterday morning that Reagan had a clogged j-tube. We used all the normal unclogging techniques including something called clog-zapper (similar to what Drain-O does, but you can put it in your baby :-) to no avail. So ultimately we took her to the germ-infested ER- I was that paranoid mother who was telling the ER staff that we couldn't be in the waiting room, we couldn't be there long and everyone had to wear masks because of Reagan's medically fragile state. Despite my complaints, her pulmonologists told me I was doing the right thing. A quick trip to Radiology to get it unclogged and we were on our way home. The Radiologist said he was impressed that it hadn't clogged yet and he also said that the home remedies simply wouldn't have done the trick. She slept most of the remainder of the day, as the journey was quite wearing on her.
Eden is doing well, she is quite stable now. With the help of her pain medications and the others for her PH she is much more comfortable. She is growing big and strong and the NICU staff love to come into her room and have social hour. She’s smiley and happy and loves to stare at people’s faces.
Thanks for your prayers this week, they have helped us get through everyday.
Adjusted Age: 17 weeks
We discovered early yesterday morning that Reagan had a clogged j-tube. We used all the normal unclogging techniques including something called clog-zapper (similar to what Drain-O does, but you can put it in your baby :-) to no avail. So ultimately we took her to the germ-infested ER- I was that paranoid mother who was telling the ER staff that we couldn't be in the waiting room, we couldn't be there long and everyone had to wear masks because of Reagan's medically fragile state. Despite my complaints, her pulmonologists told me I was doing the right thing. A quick trip to Radiology to get it unclogged and we were on our way home. The Radiologist said he was impressed that it hadn't clogged yet and he also said that the home remedies simply wouldn't have done the trick. She slept most of the remainder of the day, as the journey was quite wearing on her.
Eden is doing well, she is quite stable now. With the help of her pain medications and the others for her PH she is much more comfortable. She is growing big and strong and the NICU staff love to come into her room and have social hour. She’s smiley and happy and loves to stare at people’s faces.
Thanks for your prayers this week, they have helped us get through everyday.
Saturday, February 12, 2011
Home sweet....
Actual Age: 28 weeks (math error last week)
Adjusted Age: 16 weeks
Not so fast- home sweet home for Reagan!!! Yeah!!! Not Eden though.... We have had a VERY eventful, stressful week.
Reagan is tonight spending her second night at home. Yesterday's discharge and getting set up with nursing at home was crazy. Lots of people in our house and lots of adjusting to the new situation. Reagan did great- the ride home was smooth, meeting her doggie was good and getting adjusted went well. She also slept for 11 hours last night!! Only a few interruptions with a diaper change and desatting due to her nasal cannula being out of her nose. Scott and I however did not sleep great, we had Eden on our mind and keeping an ear open for Reagan. Hopefully tonight will be a little better. Having nurses here is different, but they are very helpful and willing to do whatever they need to for Reagan.
Now on to our precious little sweet pea. Eden is sick again. Her pulmonary hypertension is causing her much trouble. Last night was VERY scary because she needed 100% O2 and extra sedation throughout the evening and night. We now have three medications on board for her PH and are praying this works. She is also being sedated to help her shortness of breath episodes, we are working very closely with a Integrative Medicine and Pain/Palliative Care provider to manage her need for pain medications. The goal is to have her comfortable but not completely snowed. This will help her breathe easier and stay calmer when an episode arises. We also found out that she has tracheomalacia and bronchomalcia. This means that the walls of her trachea are floppy and she has weak cartilage in the walls of her brochial tubes. Therefore when these all collapse she has an episode where she cannot breathe even despite being at 100% O2. Our hearts just ache watching her in pain and we would do anything to take her place.
PLEASE, PLEASE pray for Eden this week that she will get better and her PH will miraculously go away. Please also pray that Scott and I will have the strength and guidance to make the right decisions for our babies.
Adjusted Age: 16 weeks
Not so fast- home sweet home for Reagan!!! Yeah!!! Not Eden though.... We have had a VERY eventful, stressful week.
Reagan is tonight spending her second night at home. Yesterday's discharge and getting set up with nursing at home was crazy. Lots of people in our house and lots of adjusting to the new situation. Reagan did great- the ride home was smooth, meeting her doggie was good and getting adjusted went well. She also slept for 11 hours last night!! Only a few interruptions with a diaper change and desatting due to her nasal cannula being out of her nose. Scott and I however did not sleep great, we had Eden on our mind and keeping an ear open for Reagan. Hopefully tonight will be a little better. Having nurses here is different, but they are very helpful and willing to do whatever they need to for Reagan.
Now on to our precious little sweet pea. Eden is sick again. Her pulmonary hypertension is causing her much trouble. Last night was VERY scary because she needed 100% O2 and extra sedation throughout the evening and night. We now have three medications on board for her PH and are praying this works. She is also being sedated to help her shortness of breath episodes, we are working very closely with a Integrative Medicine and Pain/Palliative Care provider to manage her need for pain medications. The goal is to have her comfortable but not completely snowed. This will help her breathe easier and stay calmer when an episode arises. We also found out that she has tracheomalacia and bronchomalcia. This means that the walls of her trachea are floppy and she has weak cartilage in the walls of her brochial tubes. Therefore when these all collapse she has an episode where she cannot breathe even despite being at 100% O2. Our hearts just ache watching her in pain and we would do anything to take her place.
PLEASE, PLEASE pray for Eden this week that she will get better and her PH will miraculously go away. Please also pray that Scott and I will have the strength and guidance to make the right decisions for our babies.
Friday, February 4, 2011
Settle in, we'll be here for awhile
Actual Age: 24 weeks
Adjusted Age: 17 weeks
The girls had their 6 month birthday this week!! No cake for them, but we did sing happy birthday to them. I can't believe how much they have grown and how far they have come.
HAPPY 6 MONTH BIRTHDAY my BEAUTIFUL, AMAZING GIRLS- REAGAN AND EDEN!!! Mommy and Daddy LOVE YOU BOTH more than anything in the world!!!!!!!!!!!
Reagan is scheduled to come home next week, we've had a discharge date once already so we're being cautiously optimistic. She is doing well on the high flow 02, growing well, and doing more developmental activities everyday. She even is taking a few mL's of breastmilk in a bottle everyday!
The settling in reference is in regard to Eden. This week as her nitric was being weaned she hasn't been tolerating it as well. Which is really bad! Nitric oxide is very important to helping her pulmonary hypertension get better. So after MANY tears and MANY discussions this week with her barrage of MD's we will be starting her on yet another Rx for her PH. We are PRAYING that this Rx will work and she can continue to grow and move past this horrible disease. She has been a little more fussy lately and not quite herself either.
Is it possible to take away 10 years of your life in one week? If so, I believe its happened to Scott and I. We are tired, stressed, anxious, worried, frustrated, all of these emotions and too many more to even type here. We have snapped at each other, others and thrown our hands up in frustration. We ask God everyday for patience, peace and to make the best decisions for our girls. We need more prayers though, this journey is harder than anything we've ever been through and its not over yet.
I can't post pictures this week because our computer is giving us trouble... yikes...
Adjusted Age: 17 weeks
The girls had their 6 month birthday this week!! No cake for them, but we did sing happy birthday to them. I can't believe how much they have grown and how far they have come.
HAPPY 6 MONTH BIRTHDAY my BEAUTIFUL, AMAZING GIRLS- REAGAN AND EDEN!!! Mommy and Daddy LOVE YOU BOTH more than anything in the world!!!!!!!!!!!
Reagan is scheduled to come home next week, we've had a discharge date once already so we're being cautiously optimistic. She is doing well on the high flow 02, growing well, and doing more developmental activities everyday. She even is taking a few mL's of breastmilk in a bottle everyday!
The settling in reference is in regard to Eden. This week as her nitric was being weaned she hasn't been tolerating it as well. Which is really bad! Nitric oxide is very important to helping her pulmonary hypertension get better. So after MANY tears and MANY discussions this week with her barrage of MD's we will be starting her on yet another Rx for her PH. We are PRAYING that this Rx will work and she can continue to grow and move past this horrible disease. She has been a little more fussy lately and not quite herself either.
Is it possible to take away 10 years of your life in one week? If so, I believe its happened to Scott and I. We are tired, stressed, anxious, worried, frustrated, all of these emotions and too many more to even type here. We have snapped at each other, others and thrown our hands up in frustration. We ask God everyday for patience, peace and to make the best decisions for our girls. We need more prayers though, this journey is harder than anything we've ever been through and its not over yet.
I can't post pictures this week because our computer is giving us trouble... yikes...
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