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.

Recovery

Actual Age: 19 weeks, 3 days
Adjusted Age: 7 weeks, 4 days

Reagan's surgery went very well, she had no complications. She is recovering and resting nicely. She was able to re-start her feedings this afternoon and my oh my she was a hungry girl!

Eden has had a few really good days also, her 02 needs have come down nicely and she's gaining weight.

Thank you so much for praying for Reagan yesterday. I will update more later.

More surgery

Actual Age: 19 weeks, 1 day
Adjusted Age: 1 month, 3 weeks, 2 days

Yes that's right tomorrow we prepare for another surgery. This time its Reagan. She will have a g-tube (gastrostomy tube) inserted into her stomach and this is how she will take her feedings. She has to work very hard on breathing while trying to breast or bottle feed and she was not taking all of her feedings by mouth, so this is the best way for her to get her feedings without disrupting her breathing. This is Reagan's first surgery and we are nervous. It's an easy procedure, but we still worry about how she will respond to the anesthesia. She also has to hold feedings for 24 hours! Yuck. She gets crabby if her feedings are 5 minutes late let alone 24 hours!! Poor baby. Her 02 needs have been about the same and she is growing like crazy!

Eden has had a good few days. She's on a daily steroid and it is helping her 02 needs decrease. She is so alert and content. She loves to look at and study people's faces and she also loves her seahorse on her mobile. Notice the pictures Scott took, she's actually laughing at it!!!

Please pray for Scott and I tomorrow as Reagan has her surgery, we need strength and peace. Reagan also needs prayer that everything will go well. Thank you.

Eydie's blog!!!!!!!!!!!!

See the link below of our BEAUTIFUL photos!!!!

http://eydienelsonphotography.com/blog/

Thank you again Eydie.

More up's and down's...

Actual Age: 4 months, 1 week
Adjusted Age: 1 month, 2 weeks, 1 day

The week started out quite well- both girls were requiring a lot less O2. Eden had a great Sunday/Monday and we had our long anticipated photo session scheduled for Tuesday. Scott and I prepared for at least one week to make sure all the details were worked out for our photo shoot. We were so excited to finally have the photos taken of our little girls. I woke up in the middle of the night on Monday fearing that Eden would have a bad night and we would have to reschedule again (this was our third attempt). Mother's intuition is always right, we arrived on Tuesday only to hear that Eden was requiring 100% O2! We were upset, her primary RN was upset, she was upset. We are so happy to have such amazing RN's, they both said let's just get her to calm down and move forward with the photo shoot. What happened next is just so remarkable, we put Reagan in Eden's bed for the shoot because she's more portable. They laid next to each other and fussed a little but two things happened- breast milk calmed them down and Eden's O2 needs and heartrate came down as she laid close to Reagan!! It was so sweet to see them together and know that the connection was helping Eden's sats!!! I am so excited to see how this twin connection will develop throughout the years!

Our photo shoot was awesome! Our photographer, Eydie Nelson is so calming, skilled and sweet. She did an amazing job and we are so excited to see the photos. Her website- http://www.eydienelsonphotography.com/ may have a few of our photos soon. Check it out. A BIG thank you to Eydie for taking the photos and our RN's S and R for making it happen and being so supportive!! Another special thank you to my Grandma for knitting the beautiful Santa hats for the girls!!

Since Tuesday, Eden's O2 needs have gone up and down but mostly up. She had bloodwork and x-rays done to check for pneumonia and she's being treated with antibiotics just in case. Her nitric oxide was also restarted this week. She's a REALLY hard iv stick, so this is especially stressful for her and now her iv is in her head, which is actually the best place for it because her arms or legs are not restricted with an iv and board to keep her limb straight. You really wouldn't know from her behavior that she's requiring more O2 or that she's sick because she's so happy, smiley and wiggly.

Reagan is being weaned down on her O2 and tolerating this pretty well. She is taking at least one bottle and breastfeed per day. She's also learned that breastfeeding is very relaxing and likes to be comforted that way. She hit 9 lbs this week! Her legs are arms are even getting chubby! I love it- I want fat babies!!

Thank you for praying for us and keeping us in your thoughts. Scott took a few photos attached here, he quickly snapped them without getting in Eydie's way but they still are just so cute!