Written on the blog December 18, 2009:
Today they had to change Blue’s Isolette just to make sure there is no bacteria or anything growing inside. So, even though she is not near as stable as Remmington, they let me hold her with the Respiratory therapist while they changed her to a new bed. Although the experience was not near as intimate as yesterday’s…it was still wonderful to see her up close and to smell her and have a few minutes with her in my hands. She is so very tender and just exudes a sweetness to all those around her. We found out today that her liver may be facing some very very serious problems. However, we won’t know anything for sure until they transport her to a different hospital for some more in depth testing. And that won’t happen for another five days. Please keep her in your prayers, as I know you all are. But specifically that her liver will be okay. She is our angel. Our sweet little angel. I know she can pull trough this also, just like she has surprised us already so many times.
Written on the blog December 23, 2009:
I wanted to tell you all how grateful I am that you follow our little family’s story and the journey we are on. I can feel a significant difference in my life with the connection of so many family, friends, aqcuaintences, and strangers all pulling together for our little babes. Thank you for all you have done.
Both the girls were moved up to Primary Children’s hospital yesterday. They are both due to have heart surgery in the next few days. Remmington possibly will have hers tonight or early tomorrow. The PDA’s (or holes in their hearts) didnt close like we had thought, and are causing some set backs for their progress in other areas. It is a minor surgery…considering. But there are risks with everything. Also, we are to find out about Blue’s liver today. I think this is the thing keeping us on pins and needles the most. I will update you with results. There is so much waiting involved in all of this. I hope I eventually learn to be more patient.
Thanks again for all you do.
Written on the blog January 18, 2010:
Again, I apologize for the lengthy absence of my posting. I will try to do better! This post brings much happy news! We have really had an incredible past two weeks, and FINALLY are seeing a very small and very dim light at the end of this tunnel.
Both girls came through their heart surgeries with flying colors! Those were some hard and painful days to watch them recover, and feel so much pain. I have never felt so helpless in my life. But relied on the presence of angels being able to hold them and give them the physical touch I could not. They’ve now been in recovery for a few weeks, and are healing wonderfully. Having TWO sick kids is no joke. I am constantly feeling pulled in every direction. The moment I feel elated and emotionally stable with the condition of one of the girls, it seems I turn around and find out something catastrophic going on with the other. Literally hours after Remmington came out of surgery, we composed ourselves…and then geared up to do the entire thing again.
I set my alarm every three hours, whether in the middle of the night or day, and go pump for endless amounts of time it seems. Those are some of my loneliest hours. Either in the hospital where I have spent all day surrounded by people, yet not really having talked with anyone. Or in the middle of the night, in the empty nursery where I listen to the sound of the electric pump willing it to drown out my worries and exhaustion. Knowing, it will all start again in the morning.
Last week was still very hard, and we still had a lot to deal with. Blue had to go through one more entire round of doctors believing she was facing a fatal liver disease, which meant Garrett and I had to go through one more round of hearing twelve different opinions and diagnosis every hour, and emotions to match. Suffice it to say, she officially does not have a need for a liver transplant or emergency surgery at this time…as far as the exact liver problems that she is facing we are still very unsure of, and only time and tests will tell. Serves me right for thinking she was over that hurtle once already 😉
We also had to deal with a lot of stress and frustration with things happening at the hospital. Nurses drawing blood from little Blue, when it was actually ordered for another baby….Remmington having a blood transfusion spilling ALL over her and Garrett as it leaked out of her IV while he was holding her….Me finding a different baby’s name attached to Remmington’s isollete, that could have lead to who knows what if I didn’t see it. ..Remmington often forgetting to breathe and watching her heart drop….one more bout of Pneumonia for Blue, and many more long hours of being told what to do and how to touch and that we just aren’t really aware of what the girl’s need like the nurses are.
HOWEVER….I want to focus on the good things and the MILLIONS of bright moments we’ve had recently instead of all the doom and gloom. We truly have had so many “firsts”…..
1. I held Blue for the first time doing Kangaroo care the day before they left for their heart surgeries. I think the nurses knew I wouldn’t have the opportunity to hold her for a long time, and they made sure that happened even though it was not convenient in any way. I am so grateful for those nurses who go above and beyond to help me and Garrett develop a closeness to the babes.
2. They had their first baths. Every Monday, Wednesday, and Friday we get to help sponge bathe them in their isolletes. We have to do it really quickly to not allow them to get cold at all, but it is so much fun to handle them and care for them and touch all of them, now that they don’t have PICC lines and IV’s shooting out of every limb.
3. Hearing Blue’s first cry. One of the risks of the surgery they had on their hearts is that their vocal cords can become paralyzed. 1 in every 5 babies has that happen! so naturally, I was very worried. When they pulled Remmi’s breathing tube out, I heard her cry right away. When Blue FINALLY got hers out a few days ago, it took her almost a day to cry, and therefor the first time was BEAUTIFUL. Now that she’s figured out how…she has found that she LOVES to voice her opinion.
4. Remmington wore her first outfit! hahaha. It was halarious. The nurse pulled out a onesie that was for premies and told me I could put it on her just for fun really, and her entire body slipped right into the neck hole! She looked adorable, but don’t think we’ll be doing that again for a while.
5. They had their first touch outside the womb! We finally got the go-ahead to transport them back to the hospital they were born at. We are so so so so happy about this, as it is much closer to home and a much much calmer environment. When the “lifeflight” team came to pick them up, they said they could ride in the same isollette. I was so excited. I feel like they miss each other tremendously and I have hated that they have had to be apart for so long. However the reuniting was much funnier than sweet. They put Remmington in first and she laid there as calm as I’ve ever seen her. Totally laid back and asleep…but oh no, Blue had much different plans. She threw a fit like I’ve never seen her do before. It was so funny…screaming at the top of her lungs, which made Remmi repeatedly open her lazy eyes and look around as if to say “seriously? are you seriously putting her in here with me? Im like totally sleeping here, if you couldn’t tell.” The nurses said Blue continued to scream the whole ambulance ride over. I have a feeling sharing might be hard for these two.
6. We got to hold them TOGETHER for the first time! Now that they are both much more stable…and both on nasal oxygen, we can hold them EVERY DAY!!!! hahahha. it’s amazing. Garrett and I just laugh and laugh about how time flies by at the hospital now. Amazing how that works now that we’re not standing in front of a box all day. Those were some long days. And two nights ago one of the nurses was kind enough to move everything form each baby as close together as she could, all their monitors and cording so that Garrett and I each had a turn holding them together. It was amazing to have both my little girls in my arms at the same time. It was the first time that I was TRULY giving myself one hundred percent because I didn’t have to feel like I was neglecting the other.
7. Remmington had her first attempt at breast feeding. We just started this yesterday, but she is really doing pretty well. They have me pump right beforehand, so she won’t actually get any milk. She still is too small to breathe, suck, and swallow at the same time. But it is incredible to see her just learning and trying to get the hang of it.
8. First 3 pound Weigh in! They are almost the same now!!! Blue is at 3 pounds 6 ounces 15.5 inches! And remmington is at 3 pounds 7 ounces and 17 inches!!! WOW!!!
I’m sure Im leaving out so very much. But those are some of the highlights of the past weeks. Things are looking bright, and we are so enjoying our angels. I almost see it as a blessing to really experience each tiny little thing in it’s own phase. It really makes me appreciate it all that much more. All of you mothers….cherish each cry, and each suck, and each poopy diaper! To me, those things are absolute miracles.
They are looking healthier and happier by the day. A little less like slimy mice…and a little more like chubby babies 🙂
We have had so many people reach out to us during this time. I am amazed at the generosity and love that has come from so many. I have a very very dear friend that I met in Hawaii when I served my mission there. She is incredible and probably one of the most selfless people I have ever met. She was in town over Christmas and had a chance to come see the girls. She then thought of a wonderful way to serve me and my family, and had her sister who is a professional photographer come take pictures of the girls! I am so thankful for her time and service. She did an amazing job, (especially given the circumstances of no light, no flash, and no room.) These will always be a wonderful reminder of what we have been through. We got them from her today….and I am so excited to share them with you! These are when they are four weeks old…
Thanks Jill for all you do. And thanks Michelle for creating such beautiful memories.
added May 15, 2017:
Yesterday was Mother’s day and this entire experience has just become a memory. A distant, surreal, yet life changing memory. I wonder how much differently I would “mother” my children had their journey here been a little easier. I wonder if I’m doing enough considering their trials to get here. I often wonder if I am worthy of the title. But no matter how many doubts and insecurities I have…one emotion always rises above all…and that is love. UNCONDITIONAL Christ-like love. The kind where you realize it doesn’t actually matter. Nothing about it matters. Not how they got here. Not their trials. Not the long-term problems associated with their prematurity. Do I love my third daughter less because she was the easiest pregnancy and delivery of all time? No. Would I love the twins any less if they did in fact have cerebral palsy or blindness or a fatal liver disease? NO. And that’s just it. I was meant to be THEIR mother. In any package delivered any way. And that’s what is so beautiful and awe-inspiring. Each of you moms out there are PERFECTION for your children…and they to you. God’s plan is so intricate, delicate, and just WISE. He knows all. And as I’ve said before, I will never know why I got to take these girls home in-tact from the hospital, and raise them, and keep them. I will never know why others don’t. I will never understand death, or loss, or infertility. I don’t know why God gave me three kids in 1.5 years, and then over four years of secondary infertility. Or why others never marry or have the chance.
I don’t comprehend His timing or plan.
BUT I do understand unconditional love. and that is something ALL women EVERYWHERE can understand. Not because we are all mothers, certainly not in the picturesque way of a beautiful white stork delivering a healthy bundle on your doorstep in your desired gender at the precise time that works best in your life schedule … no….
But because we all have a mother.
And that is God’s greatest gift to each of us.
(stay tuned for big news!)