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...

Merry Christmas!

Actual Age: 20 weeks, 6 days
Adjusted Age: 8 weeks, 6 days

Merry Christmas!! We certainly never anticipated spending Christmas Eve and Christmas Day in the NICU, but that’s where we ended up. The NICU feels like our second home, we literally have spent endless hours there. These hours fill up pretty quickly with holding, changing diapers, feeding, pumping (for me, not Scott), playing, cuddling, consoling, worrying, praying, trusting, hoping, and believing. We are always so busy there and really don’t want to come home and leave the girls there, but ultimately we have to every day. We have had enormous struggles this year, but God has given us the best gift ever- two beautiful baby girls that we love more than the world itself. We feel GRATEFUL to have them in our lives, and below is just a few reasons (I stole this idea from a friend’s Christmas card, but I’m sure she won’t mind):

G od. God is so good to us. He has had His healing hands on the girls since day one. He has also comforted, listened and calmed Scott and me during our darkest days. We are so grateful to have a relationship with Him and know that he will take care of us no matter what.

R eagan. Our beautiful twin A who we love so much, she is our joy.
Amazing. This is truly the only word to describe our little girl’s journey. They are fighters and have been through more than any baby should have to go through ever. We are inspired by their strength. They still have a journey ahead of them, but we know that they will turn out to be amazing toddlers, teenagers and women and we cannot wait to see what they will do in their lives.

T wins. I still cannot believe we have twins! We were asked today how it happened…. well, we know how it happened, but we don’t exactly know why we were chosen to have it happen to us. When we decided to get pregnant we wanted one…. HUGE Surprise- we got two! Our twins, though they are 3 lbs. different are identical. Identical twins are a 3 in 1,000 chance and do not ‘run in families’. They are beautiful and we couldn’t have asked for a better gift this year.

E den. Our beautiful tiny twin B who we love so much, she is our little miracle.

F amily. Scott and I have always considered ourselves a couple, but now we are so much more- we are a family! The four of us and Lilly make a perfect family.

NIC U. Even though we are tired of being in the NICU we realize that our girls would not be here for their first Christmas if it wasn’t for the amazing doctors, nurses, RT’s and support staff at Children’s. We have experienced many emotions during our 21 week stay in the NICU, but have had some compassionate, supportive people that we truly believe God put in our lives for a reason.

L ove. This has been used before, and it may sound cliché, but I will use it anyway- All because two people fell in love…. We have two amazing little girls because of this. Scott and I often joke around and poke fun at each other but we truly love one another. God has brought us closer together because of our little girls. There is no way we could get through these tough times without true love. This has been the most trying experience of our lives and we have needed each other to lean on and for support everyday.

Our girls are continuing to make progress and they will go home, but as one of our Neonatologists have said- it will be when the girls tell us they are ready. For now we wait and pray. Thank you for thinking about us, providing us with meals and sending us your beautiful Christmas cards this season. We love you all.

More recovery

Actual Age: 20 weeks, 3 days
Adjusted Age: 8 weeks, 3 days

Eden's surgery went very well, she had no complications and is recovering comfortably. The anesthesiologist was a familiar face, he did Eden's last surgery. He said he hopes to never see us again, we politely agreed. Now that Eden is on the road to recovery, we will have to work towards the plan to wean her nitric oxide and get her to gain more weight. She is still very little for a 20 week old baby, but we have to remember that she had a lot stacked against her to begin with. She definitely is our little miracle and as we hear more stories of parents with babies who have very difficult struggles we are so grateful to God for giving her to us. Not to forget Reagan, she's definitely our other little miracle. She is also doing very well despite the fact that her reflux seems to have gotten worse. Our OT said that sometimes babies who get g-tubes have worse reflux for awhile, then it gets better. We are hoping the bad reflux is short lived, poor baby is really struggling.

We have to say a BIG thank you to our wonderful neighbors who have provided us with Christmas goodies, full meals, treats for Lilly and beautiful Christmas cards. This is exactly what a neighborhood should be- supportive, friendly and caring. We hope that each of you will remember your neighbors when they are in need, we know that this experience has been revealing to us to remember these special people in our lives. Thank you all!

Thanks also to everyone else for your prayers last week and this week as our girls have underwent their surgeries. It's because of your faith and prayers that both girls surgeries went great and Scott and I don't have ulcers and gray hair.

We should get a punch card for surgeries.

Actual Age: 20 weeks
Adjusted Age: 8 weeks

We have to find some humor in all of this! Eden is scheduled for surgery on Wednesday. Her Christmas might not be so merry, poor baby. She will be getting a g-tube like Reagan's and bilateral inguinal hernia repair. Even though recovery is no fun and we certainly don't like our little babes to go through surgery, the surgeries mean we are one step closer to home. No, we don't have a date yet although we wish we did.

This week was good, both girls 02 needs have remained steady. Reagan is recently struggling more with her reflux so that isn't very pleasant for her. We find that sitting her up on our laps is probably the best way for her to eat. Eden is playing the rollercoaster game with her weight- she will gain then lose. It's a little frustrating so we are working with our entourage of MD's to figure it out. We got great news today- Eden's eyes are fully mature! She is no longer at risk for ROP. This means that we can attempt to wean her off the nitric oxide and onto a different Rx for her pulmonary hypertension. The nitric oxide is an inhaled gas that she cannot go home on, so the other Rx is better in that sense. We prayed a lot about today's eye exam so we are truly thankful to God for His miracle.

Scott and I are busy. We don't have much time for anything other than spending time at the NICU, work and sleep. Somehow we are managing to get little things done but we are constantly saying that it would be so nice to have them home versus driving to the NICU, parking and driving home again. Our day will come soon when we can be a family at home! Until then, our home is at 2545 Chicago Ave, Minneapolis.