First Bath.

She had her first bath last week. As in regular Diva fashion she LOVES her spa time. Loves. It. She melts into it and just blows bubbles and is so divine while we wash her...



Diva with her Princess Ducky...



This face says "Why yes you may massage me there, thank you servant."



She loved having her hair washed, but who doesn't is that why women pay ridiculous amounts of money to have someone wash/cut their hair?



Bath time is all done so she rewards us with smiles.



Now that she has been washed and pampered and about to be fed she can go to sleep knowing she is a Princess and is loved. We love you baby girl.

Little Diva.

After a very long week we had a great night! This week we were able to hold Juliet almost every night for Kangaroo Care. It is an amazing concept that has proven to benefit babies and help with bonding for mommy and daddy. But this week was hard too. Juliet's little neighbor (another baby girl born at 26 weeks) passed away suddenly. She had never been as active as Juliet but in a lot of ways she did better. It made us realize how quickly things can change for these little ones. In a matter of hours you can go from stable to coding. It was a HUGE reality check and made our reality all to real. We pray for the family but know that we had the privileged of being near an angel for a couple of weeks that has now returned to her Heavenly Father. I can't help but to pray to him and ask for Juliet to spend a lifetime with us. I am not ready to let her go and I hope that it is never asked of me to do so.

Okay, so as far as the great night; it was so fun! She was in such a good mood tonight! She was active but calm. And she let us try on her little hat and dress her up. It was so fun to be able to feel like a mommy and do something normal. She has such a funny little personality. She blows bubbles, makes cute faces, and for over 10 minutes opened her eyes and looked around. She is so AWESOME!

I pray for the day we can bring her home and be under one roof as a family again. I pray that we are blessed to keep Juliet on earth for a lifetime.

Attitude.

Okay so I thought that it would be a good thing to explain some of the medical things that Juliet has going on. She has a HUGE attitude and is very picky about some of her care. :-) She has been on an oscillating ventilator for most of her 2 weeks. She tried a CPAP machine for 2 days but then had to go back to the ventilator. She has an umbilicus line (arterial) that they can take blood from for blood gases to test her different types of levels and progress. She also has a PICC line that she can have 1-3 meds being delivered at any given time. And she has all her cords for monitoring heart rate, blood pressure, oxygen saturation, and breaths per minute. Which leaves her looking like a little cylon sci-fi creature. LOL! She was also on the bili lights to bring down her bilirubin levels until 2 days ago. She is fed through a gavauge tube about 7cc of breast milk every 3 hours. She only has a little residual stomach fluid left after 3 hours on occasion, which means that she is handling her feedings very well for 29 weeks gestation.

With all that going on she is a busy little girl. And all those things are what keep her alive. She has nutrients delivered through IV to keep her electrolytes, lipids, amino acids, and I am sure much more that I don't know nor understand keeping her healthy. On occasion they give her light sedatives to keep her calm. Every 4 hours they do "cares." This is changing diaper, taking temperature, cleaning out her mouth with a little mouth sponge, occasional sponge baths, checking her weight, changing linens if needed, and most important moving her position. Sometimes this is just a head rotation, or on to her sides. But a couple times a day they flip her back and forth from her back to her stomach and then later back again. When I can be there during this I get to help with some of it. When she was 3 days old she had a PDA surgery to close a valve in her heart. It went well and she healed quickly with no complications. Finally at 2 weeks old both of her eyes are now open. They have been fused since birth. So far it appears that she has her daddies shape of eyes. It makes me so happy because I think that they are beautiful and I have told Joe so many times that I hoped if we had a girl that she would have his eyes and eyelashes. I hope it stays this way but you never know.

As I said previously she has attitude. She is silent about it though. She isn't a complainer at all, she just is silently defiant. Much like her father. :-) She inch worms her way to the bottom of her bed, constantly having to be put back in position. She almost always poops right after her diaper change. She swings back and forth on her oxygen from to high saturation to too low saturation, mostly when she wants to be moved to a new position. BUT the biggest attitude out burst we have had was yesterday. She had been swinging on her oxygen again and the respiratory therapist thought it might be her tube was too far into her lungs so he pulled it back a bit. Sure enough her swings weren't near as drastic. The next morning (September 3rd) they looked at the x-ray of her lungs and saw that it needed to come out a little bit more. This fixed the swings pretty much entirely. So having had the Dr. call with my update early in the day, I knew she was doing well and decided to run my errands I needed to do. At about 6pm Joe and I headed to the hospital. We walked in and immediately noticed something was different about her. Our nurse for the night Karen said "Hi! Juliet has a surprise for you!" I knew something was different and then I saw it. She is back on CPAP!! However it was not because of a choice by any Dr. or Respiratory Therapist. She had been laying on her stomach and had apparently decided she had had enough of the ventilator and so she pulled her head back and turned it the opposite direction, which I am told takes a lot more effort than it appears for a 2 week old micro preemie, and yanked the tube the rest of the way out. I think she realized "hey! these people have been moving this tube out, why don't I just finish the job!" So they decided to try CPAP before re-intabating her. Well here it is almost 24 hours later and she is still doing well. My hope is she keeps doing well.

If she stays on the CPAP for another day they will remove the umbilicus line since she won't need as many blood gases, and it is better because it is a risk for infection while it is still in. This is exciting because IF this all happens this weekend I will be able to hold her on my chest and do skin to skin for the first time!!!! I pray for this to happen. IF her feedings keep going well over the next week than they will pull her PICC line out and she will be able to wear clothes! Its all a lot of IFs, but I will take them. Even if these things don't happen on that time line it is nice to know that there is hope for them. I haven't allowed myself to even consider these things happening on a certain time frame. I just want her to get the umbilicus out so she can be swaddled in blankets.

So that is the "medical" update. She doesn't have any real big issues going on, she just has a lot more growing to do so we can reach her future big milestones. I pray no issues arise, and we are reminded regularly that things can always change for the worst quickly. We are thankful for all the prayers and support. She is such a great blessing and a huge miracle in our lives. Daily I count my blessings for being given the opportunity to be her mother. Let me know if you have specific questions and I can try and answer them . :-)

Courage.

"Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord."
Psalms 31: 24

Every night I think I cry before going to bed. Now I do not say that to make people sad. I will admit most nights it is out of sadness, desperation, anger, confusion, and just postpartum hormonal issues. But there have been several nights it is out of hope, love, encouragement, and the feeling of gratefulness. I am finding so many wonderful blessings through our experience at the NICU.

The NICU has a parent support group called Common Bonds. Every Wednesday night they have a pizza dinner, and every Thursday they have a scrapbook class for the mommies (or daddies and grandmas). The women (there might be men but I haven't seen any yet) who are in charge of this group are ALL NICU mommies who have experienced 15-200+ day NICU stays with some of their children. I am so appreciative of these people and their efforts. These two weekly events have given me a place to feel "normal." We get each others lingo, we share similar emotions, we all understand what it is to watch our very small innocent child(ren) be in pain. Most important we all understand the guilt, whether it is misplaced or not, that comes from the "what if I had done something different." And knowing that these ladies are on the other side and are still going strong, and really are now stronger gives me courage. Not all of them have their children here on Earth anymore.

On Wednesday nights they also bring gifts around to the babies and parents. Tonight I received a gift that has touched my heart, and I think has set me on a new path. I received a Ryan's Lion, his name is Courage. I don't even know if I can explain to you how this has made me feel. When they gave him to me and Juliet I thought "well isn't he cute." But once I came home and read the brochure that he came with it started to touch my heart. I then went to the the website and researched this gesture. He is something tangible that says, "I've been there too." As I started to realize all of the many families that have faced illness, loss, pain, and tragedy my heart felt full of sympathy, empathy, and something else. I began to feel a fullness that I haven't felt in years. I have felt courage again. Juliet has given me back my courage. These women have given me back my courage. And now I have a lion to remind me of that courage. Each lion is numbered because there aren't very many. I have #170. Someday if or when we get to a point we don't need him to remind us of our courage, we may pass him onto someone who needs him more than we do.

I hope that someday I will be fortunate enough to donate to organizations that support those who are going through trials. In fact I am finding so much joy in reaching out to the other mommies in the NICU that I even forget sometimes that Juliet is not considered a "well child." In fact for at least the first year of her life she is considered legally disabled. Many moms I talk to have full-term babies with minor NICU issues and have already came and have left in the 2 weeks we have been there. And they are all shocked to find out after I reached out to them that I have a 26 weeker. My situation seems so much worse than theirs, so why am I comforting them? But I tell them all the same thing, that it is what heals me. I am doing what I can but most important I tell them I have hope in the Lord that he will give me strength. I am so blessed to have Juliet to remind me who I am. And I look forward to finding more service opportunities. Maybe I will be on the other end in a year or two and help future micro preemie moms find their way. Now don't get me wrong, if Juliet takes a turn for the very worst... well lets just not go there yet, or ever. :-)

If you have a minute please go to www.RyansLion.org and read about this amazing gesture made to those in need. And here is more info on who supports the hospital that provides Juliet her care: http://intermountainhealthcare.org/communitysupport/giving/uvfoundation/Pages/home.aspx