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!!

No more milk in the barn

Actual Age: 23 weeks
Adjusted Age: 11 weeks

I had a surplus of breast milk in the freezer until today... a very sad day. This doesn't mean the girls won't get breast milk anymore, it just means that they will also need to be supplemented with formula. I have worked so hard to keep up my milk supply and I really wanted to make it one whole year, but with two babies it has been more than my body can handle.

The girls are doing well getting adjusted to their new diggs and new RN's. In fact they have been already getting into a schedule, which is perfect preparation for them coming home soon. Eden should be getting her home vent this week and Scott and I chose a nursing agency for her home nursing care. We will also have a Home equipment assessment this week to ensure that our home is safe, has grounded outlets and to determine set-up for the girls medical equipment. Scott had the ducts cleaned on Friday and we plan to clean the carpets soon also. The nursery is all ready for two little babies to come home. We can't wait! We realize that their home coming is not typical but it will be a very happy day for us!!

The countdown starts over at 1

Actual Age: 22 weeks, 4 days
Adjusted Age: 10 weeks, 5 days

After 158 days in the Neonatal Intensive Care Unit our BIG MOVE to the Infant Care Center (ICC) happened today!!! Today was day one in ICC and my was it a whirlwind. We have been waiting to move to ICC because its one step closer to home even though its only across the hall from the NICU. ICC is very much a transitional unit where we prepare for going home- we will take on more responsibilities and try to get the girls on a schedule. We were sad to leave our NICU RN's and MD's but the girls were ready to go to ICC. Eden will be put on her home vent hopefully this week which will take about one month to get her fully adjusted and set up before she comes home. It's so great having the girls in one room, but also very interesting. We can no longer close the door if Reagan starts crying.

This week was rather uneventful which is good when it comes to the NICU/ICC. Eden had a great week, her O2 needs were very low, she was happy and smiley all week and she is learning to breast and bottle feed. However last night her O2 needs increased and after running labs her white count was higher than normal which could indicate infection. She had to have another iv started and antibiotics for at least 48 hours.
Reagan is almost over a cold that started on Christmas Day but she's having trouble with oral stimulation- she doesn't like her pacifier and she tends to gag easily. This is something that we will be working on very diligently with OT and Scott and I will work on it everyday. We need to get her to LOVE her pacifier, bottle and breast.

We are grateful to have moved to ICC, we realize that this is absolutely one step closer to home. We love to think that they could be home VERY soon, but it also seems daunting. Our girls have special needs that will require us to be very organized and remain calm and stress-free if that's even possible. Thank you for your continued thoughts and prayers.

The Hedin Year in Review Continued....

October:
October was another rollercoaster month. After four weeks on the nasal cannulla, Eden had to be re-intubated, which was heart-breaking. However, the girls continued to gain weight and very slowly get better. I went back to work in October and we celebrated the girls first Halloween. The girls, pictured here were surgeons, their career you say? Scott and I certainly hope so!!




November:
We made some pretty tough decisions this month, Eden got a tracheostomy. As this was another major surgery we were quite scared. She did very well and we have accepted the trach as a part of who she is for a while.





December:
More hard decisions this month, both girls got g-j tubes so that they could eat easily without disrupting their energy being put towards their lung development. But here we are, closer to bringing the girls home and a happy, grateful family. We have had more struggles than is even possible to comprehend for one lifetime . Our stress and anxiety is sometimes more then we can handle but we have something so beautiful- we have LOVE for each other, LOVE for God and LOVE to get us through each and every day.

The Hedin 2010 Year in Review

Actual Age: 22 weeks- 5 months!
Adjusted Age: 10 weeks

January:
My unemployment streak ends! I was hired by Eli Lilly! What a blessing to finally be employed again. Scott continued to get his business off the ground running.

February:
Scott and I historically did not celebrate Valentine’s Day because we coined it as a “Hallmark holiday” but beginning this year we will now take part in the festivities. Why you ask? Because February 14th, 2010 is the day we found out that I was pregnant!!!! We hadn’t been trying that long and we thought that January was a bust because we thought our timing was off- wow were we wrong!

March:
The biggest shock of our lives happened this month. The minute the ultrasound tech said ‘there are two heartbeats’!!!!! we immediately started wrapping our minds around TWINS!! Two babies!!! At one time!!!

April:
Scott’s world travels left him stranded in France for a few extra days this month. He went on a cycling trip in Italy with a group from SCS and had a great time. He raced in a huge bike race in Italy, drank lots of espresso, and had some great experiences with friends. The volcano in Iceland caused him to spend a few extra days in France- there could be worse places to be stranded right.



May:
May is the month that I started bedrest. My Perinatologists decided that my blood pressure was too high and the growth discordance for the girls was too wide, so the couch officially became my best friend. Scott’s race season also officially began this month.



June:
After 6 years in our home we finally added a maintenance-free deck. The deck was meant for 2009 but with lay-off’s we couldn’t justify the cost. So the construction began- we love our new deck and used it a lot this summer.



July:
As Scott’s crazy race schedule continued, I was hospitalized for the duration of my pregnancy. He completed Ironman Racine 70.3, Minneman sprint course, and did an Ironman Madison training camp. In the middle of all this we also celebrated our 5 year wedding anniversary. It was spent getting take-out from Common Roots and dining in my bed in the hospital. We made the best of it that we could, but we were 100% focused on keeping our babies snug inside my tummy.



August:
The month our lives changed FOREVER! We became Mom and Dad on August 2nd when our beautiful, amazing, perfect little girls were born. Yes, a little early but this is a day we will never forget. We love them more than anything in the world! Reagan and Eden Hedin are our little miracle babies. This was also the scariest month of our lives, our little girls were hanging on to life for many weeks. The rollercoaster of emotions and stress is ingrained in our brains as something we will never forget. We praise God for giving these girls life and keeping them safe and here to grow and live full, happy lives.




September:
Scott Hedin is an Ironman! September was the much anticipated month that held the long awaited, major accomplishment that Scott trained 11 long months for- Ironman Madison! Our girls were at a somewhat stable position so we felt that it would be OK to leave, don’t get me wrong- it was terrifying to leave them and I called many times, but ultimately they were fine that weekend. What an amazing event to watch Scott complete a 2.4 mile swim, a 112 mile bike and a 26.2 mile run.





Oct-Dec to follow...