HOPE

There is always hope.

Many have commented via email and so forth that they are amazed at our positive attitude during this scary time. To be quite honest, I am an emotional wreck and Jeremy is the one that from the moment she was born he has been her biggest cheerleader. Just after she was born the NICU nurses/doctors were having to bag her to help inflate her lungs. Jeremy stood next to the nurse doing the bagging and cheered/encouraged her to not stop. He told her if she made it to 70, he would give her a high five. He even at one point massaged her shoulders to keep her going.

That was the first of many moments he has kept me encouraged and positive. I didn't even see him cry till last night while looking at Ayla and Zoey's last photo together on their blog (micro preemie family we just met). I look up to him so much in so many situations of his calm coolness and willing to take charge when everyone is crumbling around him.

When I start getting down, he picks me up and reminds me of the many miracles and blessings that have happened so far with Eden. Jeremy is such a blessing to have as a husband and father. He keeps finding out positive ways we can support Eden with love, spirituality, and hope.

Last night, Jeremy and I spoke about how we can't even think or talk about, "what if..." in a negative way. As if the thoughts are pushed out of our minds and feelings by some other force. This led us to talk about Eden's pregnancy and how so many times we had scares of loosing her from October 13th on to now. Every time we had an inkling of despair we would be amazed and comforted by her healthy heart beat or ultrasounds of her looking like a happy, normal, healthy baby right on her gestational target age. Even with all of the constant bleeding, cramping, pain, low amniotic fluid, repeated pre-term labor, and extraordinary birth; she reminded us constantly of hope and faith that she was ok.

Even, as tiny and premature as she is and with so many odds against her, every day, every hour, she reminds us of hope and faith. How can we deny her as a miracle and all of the many tiny miracles she has made us witness. Hope gets us through and keeps us smiling at our beautiful and tiny little girl Eden.

We are so humbled and thankful for the fact, "there is always hope."

From the Nurse's Camera 12/30

Eden's nurse told us we could leave a disposable camera by her bedside and they would take photos of her when they change out her tubes and uncover her face. So we did. They took this photo yesterday morning. She looks really red in the photo with the special lighting in her bed. She really is more pink in person than red. Her eyes are not yet open, they will be fused together for a few weeks or so. Each baby is different when they open their eyes.

As Jeremy and I have learned, we hear, "It depends...," "Every baby is different," on every explanation of issues and time lines for Eden.

We will let you know when changes happen.

Our Meeting with the Hospital Social Worker

The hospital is nice to just send the NICU lactation specialists to us, the Chaplin, the financial aide person, the Parent Networking person, and so on. It is good because parents like us are stunned, in shock, emotional, physically drained, and overwhelmed with information, so it is nice the hospital knows what we need and just takes over bringing the specialists and support teams to take action helping us.

Jeremy met with the hospital Social Worker yesterday. After speaking with us and reading about Eden, she has a family in mind to be a support for us. The family is the same religion and have a daughter (soon to turn one) that was a micro preemie here at St. Luke's NICU. That same day, the husband Ryan called to talked to us. Jeremy talked a long time with Ryan and was given a lot of good advice, information, and inspiration. Ryan and his wife Heidi met with us at the NICU the next day. They even brought us a basket full of goodies and a gift for Eden. What kindness was felt from essentially strangers.

http://www.amazingayla.blogspot.com/ this is her and her twins website too http://www.caringbridge.org/visit/aylazoey

We also met Marilyn, her son is a micro preemie in the room next door to Eden. He was born at 25 weeks and he is on his 89th day in the NICU but things are going well. She comes up from Twin Falls during the week and her husband comes up on the weekends. It was wonderful to talk to her and hear Marilyn and Jackson's story to inspire us and warn us for what may come. Here is Jackson's blog http://www.tarkalsonbaby.blogspot.com/

These long term NICU families are amazing.

Here is another micro preemie website. I don't know the people personally but it was a good website to look at to find more inspiring stories.

http://www.micropreemie.com/

What is a micro preemie?

Many of you may be like Jeremy and I, "What is a micro preemie?" Well Eden is a micro preemie. Before she was born, we had never seen such a small and perfectly formed baby in real life. We didn't know that micro preemies existed. She amazes and inspires us.

From a medical website: "Preemie" is the common term used when referring to a premature baby. The dictionary definition of a preemie is “a prematurely born infant”. A preemie is born before 37 weeks gestation while a full term baby is born at 37 weeks or after. Preemies require a very different start in life, and this can vary dramatically depending on the level of prematurity. Micropreemie and preemie are the two terms used to help define the degree of prematurity.
To an NICU medical professional, a micropreemie or micro preemie is defined as a baby that is under 1 3/4 pounds (between 700-800 grams) and is generally born before 26 weeks gestation, but most people prefer to loosen this term up to include any baby under 3 pounds (1500 grams) or under 29 weeks gestation. Micropreemies require a lot of medical attention in order to survive, and many more micropreemies are surviving than ever before in history. The statistics for the survival of a micropreemie can range from 10-80%.

Some of the many difficulties that a micropreemie experiences are immature lungs, an underdeveloped digestive system, cerebral hemorrhaging, high risk of infection, incomplete feeding reflexes, severe anemia, neurological delays, physical handicaps, and long term health issues. Because of so many problems associated with being a micropreemie, medical intervention to keep micropreemies alive include biliblankets, blood pressure monitors, cardiac monitors, endotracheal tubes, isolettes, intravenous pumps & tubes, nasal CPAPs, nasal gastric tubes, nasal prongs, oxyhoods, oxygen saturation monitors, phototherapy lights, pulse oximeters, respiratory monitors, synthetic surfactant, temperature probes, UACs, ultrasounds, UVCs, and ventilators. So much more information is being made available to parents of micropreemies than ever before, allowing parents the opportunity to educate themselves on their micropreemie's needs.
Here are some websites to read inspiring micro preemie stories. Jeremy and I find the many stories in the preemie scrapbooks we read at the NICU and meeting other families of micro preemies that we gain a lot of information, and hope.

Eden Has Made it Through the First 72 Crucial Hours and is Still Stable!

We celebrate today our strong little girl Eden fighting for her life.

The first 72 hours with a micro preemie are the scariest. There are so many things that they watch for and control. So far no brain bleeds, her lungs and heart are good giving the situation, her breathing is as good as it can be considering, her infection signs are improving but she will still remain on antibiotics for 7 days, they are giving her treatments for her PDA in her heart, and they keep her sedated most of the time so she is as comfortable as can be outside the womb adjusting to her new surroundings and healing. Her coloring and skin is looking better too. There are so many other daily battles and hurdles to overcome, but we are thankful so far for the first few days going as smooth as one can hope for in her situation. What a miracle baby.

Thank you for your continuous prayers.

The First 72 Hours are Crucial

We don't want to leave her side for the first 72 crucial hours. Here Jeremy is camping out in the lobby. I read, type on my laptop, talk to nurses and other families, eat drink, pump, eat, drink pump. The hours seem to go by quickly when we are at the NICU. We didn't go home the first night and Eden's nurse set up cots for us in an empty room to sleep a few hours. We didn't want to leave her side. Especially Jeremy, I couldn't drag him out at 3 a.m. an it had been snowing all night so I didn't want to drive in the snow by myself. So we stayed till 9 a.m. and then went home to shower and I napped while Jeremy went to work for a few hours at the office. Then we went back and stayed. Grandma Cami and Grandpa Roger brought us dinner from our ward friends and the Noah and Paige. We ate in the waiting room and played scrabble, read books, and colored for a couple of hours. The kids really want to see Eden but with Flu Season and H1N1, no one under 18 is not allowed in the NICU. Even then, only parents and grandparents are allowed to visit. We always scrub up as soon as we get there and then take turns visiting Eden and sending out our love and encouragement.

Last night we had dinner in the waiting room with the kids and our Morris Grandparents again. We read books and hugged and then the kids went home with Grandpa and Grandma. Jeremy and I stayed till 2:00 a.m. Last night was the first time Jeremy has slept in his own bed for at least a week. When I was bed rest at home, the couch was more comfortable on my hips so he slept on the floor by my side. Then in various rooms in the hospital, he slept next to me where ever he could. What a sweet heart and so sleep deprived. I am amazed he hasn't broke down yet. My strong man.

Eden's NICU Home (Second email sent to Friends and Family)

A picture of Eden’s NICU home…the family info sheet and photo of her family that is hanging next to her in the NICU…Jeremy and Rachel in the waiting room (he has been a rock to lean on and always helping us stay positive, I cry most of the time and then smile at the positive things around me)…a photo of Rachel holding Eden’s (Pampers) diaper…A photo of the nurse’s hands in with Eden so you get an idea of her size.

Good news for today December 30, 2009…Eden’s right foot is no longer purple…Rachel’s milk started to come for nursing (amazing - a mother’s body makes the type of milk that a gestationally aged baby’s needs, Rachel is freezing the milk at the NICU till Eden can have it)…Eden’s coloring looks better today and her vital signs on the monitors have stayed good through the night and now it is 7:30 a.m. We never left her all last night, so we are relieved for another good night for Eden.

Thanks for your continuous prayers.

With Love,
Jeremy, Rachel, Noah, Paige, and Eden Swenson

Eden's Arrival

Eden Camile Swenson
Born on December 28th, 2009
At 9:02 a.m.
St. Luke’s hospital, Boise, Idaho.
1 lb. 1 oz.
10.4 inches

Eden was born almost 4 months early, at 23 weeks and 2 days gestational age. Her due date was April 24th, 2010. She is currently in stable condition in the St. Luke’s NICU. We hope she continues to do well and stays in the NICU for at least a few months and then eventually home with us.

Eden came early due to pregnancy complications. Rachel was on strict bed-rest at home since December 22nd and on bed-rest at the hospital since December 26th. Rachel had been bleeding since October 13th due to SCH or Subchorionic Hematoma (a gathering of blood between the membranes of the placenta and the uterus). The bleeding usually resolves, but in Rachel’s case it never did. The constant bleeding began irritating the uterus in December causing cramping, which then caused contractions, which led to pre-term labor over and over, and then her water broke. Once Rachel’s water was for sure ruptured and signs of infection were showing, her doctor decided not to stop labor anymore. Jeremy and Rachel depended on bed-rest and prayers to make it another week.

On December 28th, in the most miraculous birth, Eden was born in Rachel’s hospital room. Luckily Eden was caught by her nurse, Heidi, who responded within seconds to Rachel’s emergency call from the bathroom. Within seconds 15 NICU doctors and labor and delivery nurses crowded into Rachel’s room and took over Eden’s care.

Like we said, Eden is currently in stable condition, given her size and age in the NICU. Premature babies like Eden go through a roller coaster of health issues. The next 48 hours and then the next week are very crucial. Being so little and fragile, we would love prayers from everyone. She is a fighter and has already survived so much. We call her our miracle baby.

Rachel, feeling up to it, decided to check out of the hospital December 29th and after a brief visit home to shower and see Noah and Paige, Jeremy and her returned to the NICU. Currently Rachel and Jeremy are camped out at the NICU most of the day and night together for the next week. Like we said it is a very crucial time for Eden.

Rachel’s parents, Camile and Roger Morris from Utah are watching Noah and Paige for this week. Our church ward has been wonderful to prepare meals for them the last few days. Next week, Jeremy’s dad, Val Swenson from Utah will be watching the kids. The following week, Rachel’s sister, Hillary will be watching the kids and then the next week after that Camile again will take over. Rachel and Jeremy will try to spend as much time going back and forth from home to the hospital.

We are so blessed to have Eden as part of our family and love her so much. There are several ways we can interact with her in the NICU and hope to do all we can to help her continue to thrive. There is a quote on the wall in the NICU that says, “Every birth is a miracle and every baby is a gift from God.” Eden really is a gift from God for us. Please keep her in your prayers. We will keep you updated. Feel free to forward this to anyone we may have missed.

With love,
Jeremy, Rachel, Noah, Paige, and Eden Swenson