Smile

March 2nd:  I love your perfect smile and how your whole face would light up when your Dad or I entered the room.  Despite how sick you were, you almost always had a smile for us.  

March

I have been anticipating this month and dreading what the end of the month will bring for weeks.  As we approach the one year anniversary of Eden’s death it makes me afraid.  Afraid because it feels so real that she’s been gone this long.  My heart aches more, the pain is stronger and I have more memories- good and bad.  I miss Eden more than the world and would give anything to have just one more day with her to rock her, kiss her, cuddle her, smell her soft blond hair and have her gaze into my eyes.  Only those parents who have lost children too soon can completely understand this.  Nothing in this world matters more than those feelings, memories and love.  To honor Eden this month, we have some special things planned.  One public way to honor and share her life is that each day this month I will be sharing something special about her, something we loved about her, something she did or some message that we feel is relevant to her life.  Please check the blog often and remember our sweet baby Eden.  
March 1st:  I love you Eden.  You are our angel and you were too beautiful for earth.

February Fun

Notice the sticker in her hand. She had her immunizations yesterday and fell asleep gripping her sticker.

Are you jealous of my hair?


I have said this before and I'll say it again- WHY do we buy toys... these tabs gave her hours of fun. Scott and I were finding tabs on our socks and in the couch for days.

Reagan is doing great! She is so funny and gives us so much joy. We just had our re-evaluation for early intervention services through the county and she doesn't qualify for as many services because she is doing so well! She will have two days per month speech therapy. Scott takes her to physical therapy on Mondays and we just started in-home feeding therapy. She is doing great developmentally and catching up to her actual age. We are still struggling with her eating by mouth. We have to be VERY patient and realize that this takes time. She likes to play with her food and sometimes will even put it in her mouth. Some food items she will swallows, but no large volumes. We will also be transitioning her to a homemade blenderized diet. This means that instead of using formula for all of her tube feedings we will blend up regular food (vegetables, meats, fruits, olive oil, etc) and put it into her tube. I have done a lot of research on this and think it will be an optimal diet for her. We're hoping that it will increase her weight gain and help her to be more interested in eating realy food by mouth.

We had our very first overnight trip this month also!! We went to Scott's sisters house and Reagan did so well. After a busy day playing with her teenage cousins, swimming at the community pool, and checking out a new house she slept in a 20 year old pack and play for 12 hours!

She is babbling constantly but her favorite word by far is baba- which means puppy. Reagan LOVES puppies!! She gets so excited whenever she sees a puppy, a picture of a puppy or a puppy on TV. Lilly is still her favorite puppy though. We asked Lilly if she really even knows how much Reagan loves her....they are so cute together. Reagan will often lay her head on Lilly and pet her fur.

As the one-year anniversary of Eden's death approaches we are feeling heavy hearts. Our sadness is more overwhelming more often. It's hard to believe that one year is almost here. There isn't a moment that goes by that I don't think about Eden. My heart aches, literally I can feel a physical ache in my heart. Other times I sit silently and can't bring myself to move for a long time. I don't even want to move. I think that if I don't move I can go back to feeling her, holding her. It will be a difficult month...I don't know if it will ever get easier.

Happy Valentines Day

We never really celebrated Valentine's Day until 2 years ago. February 14th, 2010 took on a whole new meaning for us and now we celebrate it with sweet memories. So Happy Valentine's Day to all and let me explain by recapping...

February 14th, 2010 6am- I woke up early and decided just out of curiosity to take a pregnancy test. It was early and I truly expected it to be negative, but instead it was literally like the movies I blinked a few times to clear my eyes and to my shock it was positive! I called for Scott who drug himself out of bed (clearly we were not early risers) and asked if he thought it was positive too.... he said he thought so! I couldn't go back to sleep so I woke up and began to think about pink or blue, strollers, cribs and soft sweet blond hair (yes, my babies had blond hair even in my thoughts and dreams).

Just a few days before February 14th here is an excerpt from my blog:
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.

February 14th, 2012:
As I read through the post from 2011, my heart aches because I miss Eden so terribly. The past few weeks have been rough. I have had many episodes of sadness and stress. I still feel a great deal of pain and try to deal with it so that Reagan isn't affected.... it's hard.
Reagan's Valentine's Day was filled with lots of cuddles, hugs and play- really just like everyday. But she also got some new puppy books, which she so affectionately calls "babas". She seems to love puppies, including Lilly. We took our first overnight trip this weekend to Scott's sisters house and she did great! She met their two large labs and she had no fear going up to them and petting them. They even licked her face and she wasn't scared. She is doing so great. Literally running everywhere and into everything. She loves to discover new things and is so curious. She's definitely our Valentine!!!

What if's

What's cuter than a baby in a TYR swim bag- its the perfect fit. Who needs a Baby Bjorn?

Muscles!!

Best friends. Reagan calls Lilly 'baby'.

I've been thinking about all the what if's lately. It makes me sad to think about these things, but it also helps me think things through. What if the girls were born just a few weeks later.... what if Eden was bigger.... what if the flight to Texas went better.... what if she wasn't so sick when we arrived in Texas... what if Eden would have lived for a few more weeks... what if lungs would've become available for her sooner. Life would be different if Eden had her new lungs, it would've been stressful but wonderful. She would be home, she would be playing with Reagan and cuddling with me at night. If I could change the what if's to reality I would. I would give anything in the world to have Eden here with me. I love her so much.

But I have to remember the other what if's and be thankful to God. What if we would've lost both girls... what if I would've died during delivery (something that wasn't too terribly unlikely)...what if we would've never had almost 8 beautiful months with our sweet Eden. Thinking about the what if's is painful but gives me reason to get out of bed everyday at the same time. Maybe this is confusing... it's just what I am feeling right now.

Reagan is amazing. She is so funny and her personality is developing everyday. She is walking wonderfully. February 2nd she turned 18 months old- its hard to believe! I love her more than anything in the world.

First cold

A regular Sunday morning at the Hedin household!


Reagan got her first cold... really just a runny nose but we definitely became worried. Her nose has been like a faucet despite that she has been happy and playful. We called her pulmonologist to see what we could do and they said we should give her nebulizers four times a day. She seems to be getting better now.

Reagan is also walking!!!! It's amazing to watch her learn to walk. She loves to walk but then gets so excited that she starts to run or clap her hands and it throws off her balance.

We're a little late on her 17 month picture but its here now. Also an update:
Length: 30 inches
Weight: 9.1 kg/20 lbs
Hair: long
Interests: tupperware, growling, showing her muscles, crawling upstairs when we turn our back for a moment, taking out ALL of her toys.
Eating: She has made a tiny bit of progress. We have a consistent schedule for oral eating everyday, so she expects it. She also has a lot of fun playing with her food, she likes to stir her soup and will use her spoon and put it in her mouth. She also has been taking bites of crackers. We're very proud of her, but it's definitely challenging.

An update on Reagan

Tupperware is her favorite toys, in fact this is a daily occurrence- taking out ALL the tupperware!


Here we are, the HAIR!!

We have had a few MD appointments lately. Nothing serious Reagan is healthy in fact, she is doing great. We had a NICU follow-up clinic appointment with one of our favorite Neonatologists- he was so impressed with how well she's doing.
Her sats:
Head circumference: 17 3/4 inches- Actual Age (17 months, 8 days) 16% and Corrected Age (14 months, 15 days) 30%
Height: 20 1/4 inches- Actual Age 20% and Corrected Age 50%
Weight: 20 lbs (9.1 kg)- Actual Age 5% and Corrected Age 16%
Hair: Still growing!!
OK she's still little but at least she's on the charts!! She is making incredible progress and we are so proud of her.
We also met with both of her NICU Occupational Therapists. They were both so amazingly influential in our NICU experience. They made us feel like parents despite having our babies hospitalized. They taught us how to work with equipment but still allow our girls to have normal baby activities. Even as I write this my eyes are filling with tears because of how special these women are to us. They treated us like primary caregivers and how to give our girls the best outcomes possible. I feel very indebted to them. The OT's did cognitive, language and motor skills testing. She did very well and scored higher than her actual age in some areas!!

We also saw her new GI MD to discuss her vomiting and oral feeding issues. We decided to discontinue one medication and perhaps start another one (we're still deciding because of possible side effects). Her vomiting has continued and its frustrating, it seems to be very behavioral but we also want to make certain that there's nothing medical. She seems to have improved slightly on her oral feeding, she likes soup and will stir her soup and sometimes put her spoon in her mouth!! She is also taking bites of baby MumMums (rice wafers), but will usually spit it out. We continue to work through these issues and keep praying that she will stop vomiting and eat more by mouth.

As this respiratory season is in full swing, we are being very careful to keep Reagan free of germs and away from people who are sick. But some of our good friends have sick kids which is very scary when they are medically fragile, so we are praying for these kiddos. They have had a long road already and really deserve to be healthy. Please keep our friends in your prayers.