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.
Thursday, February 17, 2011
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...
Saturday, January 29, 2011
Will I ever stop worrying?
Actual Age: 24 weeks
Adjusted Age: 14 weeks
I worry a lot, I just always think something is wrong and I fear for what could happen. I know the girls are in great hands at the hospital, but I still worry... Will it ever go away? I'm not sure. Our girls are considered medically fragile and this alone makes me worry. The worry causes anxiety and the cycle continues. I'm sure every parent worries, but its especially hard for me. Enough of that...
Eden is doing very well being weaned off her nitric oxide. The next few days will be critical during her weaning, so we will watch her closely. She is growing and is super happy and smiley, she has lots of visitors just to come in and see how incredibly cute she is.
Reagan was put back on high flow O2 and she's doing well with it. She's been quite fussy and sleepy lately, so we will watch her closely. She is also growing like crazy and loves her tag blankie. It's amazing how much it soothes her already, I'm sure this will be incredibly difficult when we want to wash it when she's two and can't go a minute without it, but for now she loves it.
Thanks for your prayers and thoughts, we appreciate it.
Tuesday, January 25, 2011
Not home yet...
Actual Age: 25 weeks
Adjusted Age: 13 weeks
Reagan's home coming was delayed this weekend because her work of breathing was increased and she was de-satting especially throughout the nights. Her O2 was increased and she's more comfortable now. We were disappointed but we realize that its what's best for her. We pray that she gets better quickly so that she can come home soon.
Eden is doing really well with the nitric oxide and Sildenifil, and hopefully her NO can begin weaning this week.
Thank you for all the prayers, this has been an especially hard week for Scott and I.
Friday, January 21, 2011
Much better
Actual Age: 24 weeks
Adjusted Age: 12 weeks
Eden is doing much better. The nitric oxide helped her pulmonary hypertension almost immediately. Her MD is increasing her Sildenifil slowly each day until she gets to the optimal dose and then they will wean the nitric. She's her happy, smiley self again. Her MD's goal AND our goal is to never have an acute pulmonary hypertension crisis occur again and as long as her Rx's are at the optimal dose she should be just fine. If we had to count steps on a pedometer, Scott and I would win. Walking between ICC and NICU is not the most convenient and Reagan's twin room looks awfully empty without Eden.
We are still on pace to bring Reagan home very soon. We will keep you posted. We are not getting excited until we are driving away from the hospital with her in the car, because as anyone who follows this blog knows that things can change hour by hour.
Thank you for your immediate prayers this week for Eden!
Adjusted Age: 12 weeks
Eden is doing much better. The nitric oxide helped her pulmonary hypertension almost immediately. Her MD is increasing her Sildenifil slowly each day until she gets to the optimal dose and then they will wean the nitric. She's her happy, smiley self again. Her MD's goal AND our goal is to never have an acute pulmonary hypertension crisis occur again and as long as her Rx's are at the optimal dose she should be just fine. If we had to count steps on a pedometer, Scott and I would win. Walking between ICC and NICU is not the most convenient and Reagan's twin room looks awfully empty without Eden.
We are still on pace to bring Reagan home very soon. We will keep you posted. We are not getting excited until we are driving away from the hospital with her in the car, because as anyone who follows this blog knows that things can change hour by hour.
Thank you for your immediate prayers this week for Eden!
Tuesday, January 18, 2011
Back to the NICU
Actual Age: 24 weeks
Adjusted Age: 12 weeks
Yesterday Eden had two episodes which required her being bagged (heart rate drop and needing 100% O2). The problem was finally uncovered after an echocardiogram was done showing that her pulmonary hypertension has gotten worse. Her MD's are calling this an acute pulmonary hypertension crisis. She had to be transferred back to the NICU late last night because she was unstable and needed to be restarted on nitric oxide for the PH. She spent the entire day today heavily sedated. We are understandably devastated, but had some lengthy conversations with her MD's and developed a plan of action. She is on an Rx for her PH as well as the nitric oxide, the plan is to decrease the nitric and increase the Rx then repeat her echo in a few days. Her MD's have every reason to believe the PH is reversible as it has been under control in the past with the nitric and Rx. She also has to continue growing until she's big enough to get the PH under control and try the home ventilator again. Eden will be in the NICU for quite sometime.
I had an absolute breakdown this morning and had to take off work to see her and make sure she was stable. Scott also was at the hospital for most of the day. The ache that we have in our hearts is too much to even handle some days. We want our girls healthy and home so badly. We want more than anything to take Eden's pain away, make her better and bring her home. It's just not fair that she's so tiny and has already battled so much for her age. We would take on any of her pain and suffering if only she could be better.
It's also a very difficult feeling to have one baby moving forward so well and to have one taking so many steps back. Reagan's discharge should be this weekend! We're thrilled, but wish we could bring Eden home as well. We know that only God knows that date and He is laying His healing hands on our little miracle Eden. Please pray that Eden will heal quickly and grow strong and healthy. Also pray that Reagan's transition to home with be great.
Adjusted Age: 12 weeks
Yesterday Eden had two episodes which required her being bagged (heart rate drop and needing 100% O2). The problem was finally uncovered after an echocardiogram was done showing that her pulmonary hypertension has gotten worse. Her MD's are calling this an acute pulmonary hypertension crisis. She had to be transferred back to the NICU late last night because she was unstable and needed to be restarted on nitric oxide for the PH. She spent the entire day today heavily sedated. We are understandably devastated, but had some lengthy conversations with her MD's and developed a plan of action. She is on an Rx for her PH as well as the nitric oxide, the plan is to decrease the nitric and increase the Rx then repeat her echo in a few days. Her MD's have every reason to believe the PH is reversible as it has been under control in the past with the nitric and Rx. She also has to continue growing until she's big enough to get the PH under control and try the home ventilator again. Eden will be in the NICU for quite sometime.
I had an absolute breakdown this morning and had to take off work to see her and make sure she was stable. Scott also was at the hospital for most of the day. The ache that we have in our hearts is too much to even handle some days. We want our girls healthy and home so badly. We want more than anything to take Eden's pain away, make her better and bring her home. It's just not fair that she's so tiny and has already battled so much for her age. We would take on any of her pain and suffering if only she could be better.
It's also a very difficult feeling to have one baby moving forward so well and to have one taking so many steps back. Reagan's discharge should be this weekend! We're thrilled, but wish we could bring Eden home as well. We know that only God knows that date and He is laying His healing hands on our little miracle Eden. Please pray that Eden will heal quickly and grow strong and healthy. Also pray that Reagan's transition to home with be great.
Subscribe to:
Posts (Atom)