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.

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.

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!

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.

A short weekend getaway

Actual Age: 24 weeks
Adjusted Age: 12 weeks

Our lives have been a whirlwind lately with talk of discharge, training dates, MD appointments, home vents, fussy babies and emphasis on growth, growth, growth. Yes that's right I said discharge dates!! Hopefully Reagan will be able to go home within two weeks!!!! We are thrilled!!! We wanted more than anything for them to come home together, but unfortunately that's not going to happen. Eden was put on her home vent last Thursday and did not tolerate it. It provides her O2 needs differently to her lungs, so this was difficult for her to adapt to and she had to be put back on the hospital vent. Unfortunately the only fix for this is time and growth. Her Pulmonologists have not put a baby her size (7 lbs, 2 oz) on this home vent and she clearly did not like it. We will try again when she's bigger, so for now we just have to wait, pray and hope for more growth from our little Eden.

Did you have hours of training when you brought your baby home? No? Weird... I'm just trying to find humor in this whole thing. Scott and I literally have hours of training to complete before we can bring our girls home. Our training encompasses learning the O2, g-tube/feeding pump, home ventilator, CPR, and trach cares. We should be given honorary nursing licenses. We really know how to do most everything already, but having more training will be great so we feel completely ready for our baby girls.

Now our weekend, Scott and I have been meaning to get away before the girls come home so we took a really quick trip to Duluth this weekend. He reserved a lovely Bed and Breakfast for us and we had a great time. An amazing organic dinner, a scenic view, trucking through the snow, spending time together. We had a great time but talked about our girls the entire time. They truly are our entire world. We love them so much!!!

Thank you for your continued prayers. Please pray that Eden will gain lots of weight and tolerate her home vent the next time we try it. Also please pray that Reagan's home coming will be smooth without any major complications or delays.

The Nursery

The nursery is about 98% complete, we are just missing 2 more pieces and it will be complete...... Reagan and Eden!!!

Some Daddy time!!