Wednesday, January 30, 2013

January 30--Happy birthday to me!

It started out like any ordinary day. I was planning on staying home with Evje and doing some laundry and some other chores around the house that have been neglected lately. Oh yeah, and it's my 30th birthday. Sigh.

I really look forward to my birthday each year; after all, it's the only day of the year when the entire world is focused on me. It is, isn't it? But this year I just wasn't feeling it. 30 sounds so old. I don't feel 30. I don't want to be 30! I want to be forever young, maybe 24 forever? 24 is a good age. Or even 26. But 30, ugh. Too old. So I was feeling a little glum, a little blue. Then I had two or three friends drop by with sweet and thoughtful bday presents. So nice. I have the nicest friends ever. They cheered me up pretty good, just by letting me know that they were thinking about me on my special day. THEN I got the phone call. It was Clayton.

Ok, somewhere along the line, Clayton's cell phone number was registered at the hospital as being our home phone number. Even though we've corrected it or thought that we've corrected it several times, the nurses still occasionally call Clayton first instead of me. Which is fine, except that sometimes Clayton can't answer his phone at work. So he gets a call from Elsie's primary nurse Bethany (whom we LOVE), who tells him that if we can come to the hospital, then we can hold Elsie. Clayton can't leave work, so he passes the message onto me. At first, I was kinda hesitant, because I didn't have a babysitter for Evje, I'd driven to SLC the last two days in a row and it gets to be a long and boring drive, it had snowed earlier so I didn't know how crappy the roads would be, and the last time that I had gotten to "hold" Elsie, I simply held her in my hands for like 5 seconds. I didn't know if it would be worth it for me to go to all of the trouble to get there if I was only going to be able to hold her in my hands for 5 seconds. I mean, I love my baby and I WANT to hold her, don't get me wrong. But it's a lot of work for me to get to the hospital. So I called Bethany to find out what was going on.

Turns out that every two weeks, they switch the babies' beds. You see, with all of the humidity and moisture involved in an incubator, there is the opportunity for mold, fungus, and other yuckiness to grow in the bed. So every two weeks, they switch the babies to a new, sterilized bed and then get the used beds cleaned. Today just happened to be the day that they were moving Elsie to a clean bed, and since they were going to be lifting her up and moving her anyway, it was the perfect opportunity for me to come in and hold her. And not just with my hands. Bethany said that I could hold her in my arms, for as long as Elsie tolerated it. Um, yes, I'll be right there.

Thank heavens for my wonderful friend Heidi who immediately dropped everything to come babysit Evje. Heidi is golden. I don't know what I'd do without friends like her. I texted my sister Mona to see if she wanted to come with me, because if Clayton couldn't be there, then it would be nice to have someone else with me. I raced into SLC. I hurried through the hospital lobby and into the elevators, this whole time with a huge grin on my face at the thought of what was to come. I probably looked kinda crazy, but I didn't care. I scrub my arms and hands very carefully, and then rushed into the NBICU Room 1. And then this happened:

Mommy and Elsie :)

 I got to hold my sweet miracle baby in my arms for the first time since she was born almost 4 weeks ago. She was light as a feather, and her breathing felt like the movements of a butterfly. I wore an open hospital gown so that I could hold Elsie skin-to-skin to help keep her warm. You can see the many blankets that she was bundled up in, also to help keep her warm.

We had to be really careful with her breathing tube and feeding tube that were still down her throat. The nurse explained that when she graduates off the ventilator & breathing tube and only uses a CPAP to help her breathe, then we can hold her more often. But now, if the breathing tube were to accidentally come out, that's bad.

She had her mouth gaping open like this for the longest time, even though she was sound asleep. It was soo funny. She looked like a little baby bird. While I held her, an alarm on one of the machines kept going off, telling us that her oxygen levels were high. Bethany explained that this was good, that it meant that Elsie was happy and content. I don't really understand the correlation between the two, but I'll take it. As long as her heart rate was normal and her oxygen levels were stable, then I could keep holding her. I whispered softly to my little Thumbelina that this was the best birthday present that I'd ever gotten. I got to hold her for about 45 wonderful minutes. Then the nurse took Elsie's temperature to make sure that she was staying warm enough, and unfortunately, she was getting pretty cold. I guess that's what happens when you have no body fat. So I had to give her back to the incubator.

On the long drive home, I spent a lot of time thinking. Thinking about Elsie and what a miracle it is that she is alive and well. Feeling the joy of finally being able to hold her in my arms. As I drove alongside the Great Salt Lake, the clouds opened up and for the first time in what seems like months, the sun came out and there was a big section of blue sky. It's been a long, cold, gray and gloomy winter. To see the sun shining on a blue sky seemed almost like a miracle to me. And at that moment, I was overwhelmed with emotion. I felt the love that Heavenly Father has for me and for Elsie. He knows us and He loves us. I felt it so strongly. I saw the beautiful mountains covered with snow, against the shimmering backdrop of the lake. God's creations are so beautiful. All of them. Elsie, even though she is too tiny to live on her own, is perfect and beautiful, because she was made in God's image. And if I have joy at being able to hold her in my arms today, I can't even imagine the joy that we will feel someday when we are in God's arms.

I guess 30 ain't so bad after all.

Tuesday, January 29, 2013

January 29

Little "Thumbelina" is doing so good this week. She's had lots of visitors. Elsie is up to 10 ml of breast milk every 3 hours. The milk is supplemented with fats, vitamins, and minerals; similar to the "food" that she was previously getting through her IV, only now they add it to the milk instead of giving it through an IV. And she's now back up to her birth weight, which was 570 grams.

Elsie was taken off the oscillator Sunday night and put on a lesser powered ventilator. She can practice breathing on her own, but the ventilator is there to help her if she gets tired or forgets to breathe. Doncha just hate it when you forget to breathe? This is an attempt to help build up her lungs instead of giving her steroids. It is still likely that she will eventually get steroids, but the dr wanted to try this ventilator first.

The stitches from her heart surgery were removed on Sunday, and her wound is healing nicely.

I know there were other things that I wanted to say, but my brain is failing me right now. So I'll post some pictures instead.

Here she is feeling the CO2 monitor, trying to figure out what it is :)

Open eyes!

I love this picture because you can see how tiny she is compared to the nurse's hand.

Thank you all again and again for all of your prayers and support. Our journey would be so much harder to bear if we didn't have all of you.

Sunday, January 27, 2013

January 26

Yesterday was a good day. We had a whole gaggle of wonderful visitors to see Elsie (she pretty much has her own fan club, lucky girl), and while I was chatting with them in the waiting room, who comes around the corner but my lovely sister, Roberta. She flew down from Portland as a surprise for my upcoming birthday and so that she could meet little Elsie. Ok, she probably came to see the rest of my family too, especially my sister Rhonda who is moving to Phoenix soon. But it was a happy surprise for me, and it totally made my day to see her, and to know that she would fly so far to come give me a hug.

Elsie has had a good weekend with few changes, which is good. No changes means stability, which means growth and healing and rest. She's up to 7& 1/2 ml of breast milk every 3 hours, and the TPN (IV "food" that was feeding her when she was having digestion trouble) has been removed. We saw her little eyes open for the first time yesterday, which was totally exciting. I know she can't really see very much yet, but it was still exciting.

My sister Rhonda took a bunch of cute pictures of Elsie yesterday, so as soon as she emails them to me, I'll post a bunch for you all to see. In the meantime, this is the cute name tag that Clayton's cousin Chantel made for Elsie's incubator. It's pretty much the cutest name tag in the whole NBICU :)

Thursday, January 24, 2013

January 24

We had freezing rain early this morning, which is pretty unusual for Utah. As I carried Evje out to the car to go to the babysitter, I was walking down the icy driveway very carefully but still slipped and slid a little. Evje evidently thought I was playing a game and thought it was hilarious. She then started jerking around in my arms, pretending to slip, which made my balance even more precarious, but we miraculously made it to the car without falling on the ice.

I picked up Clayton from work and we went together to see Elsie. She is continuing to recover from her heart surgery and is doing well. Her stitches are healing nicely and will be removed on Sunday. She is being fed 5 & 1/2 ml of breast milk every 3 hours, which is quite the increase from the original amount of 1 ml every 3 hours, and they will continue to slowly increase the amount over the next several days. She hasn't gained any weight since I last told you that she was up to 550 grams, but the nurse said that this wasn't terribly surprising, as her body is still recovering from the surgery and getting used to the breast milk. She should start gaining weight within a few days. She is still digesting the food very well, which is good. Her lungs are still underdeveloped and inflamed, but there's not much that can be done about that besides wait, and give her time to grow.

While we were there today, Elsie was being very wiggly. She was laying on her tummy again, and one time managed to lift her head partially off the blanket. I can't believe how strong she is. She kept wiggling and squirming, so the nurse suggested that I "cradle" her. I placed one hand on her head and one hand on her diapered bum, and applied very gentle pressure. This basically helped her to feel a little like being cradled like she would be in the womb, much like swaddling a baby. It comforts the baby and helps them to not flail around so much. After a few moments of cradling, the nurse pointed out that all of Elsie's vital signs had gone completely relaxed and back to normal. I can't hug her to me or hold her close yet, but I can cradle my baby  with my hands and bring her comfort. Eventually we had to go, and as I lifted my hands, Elsie immediately began wiggling and jerking around, and my overactive mommy imagination felt like she was reaching out for me, not wanting me to leave. So I placed my hands on her for a few more minutes before leaving. Here is a grainy, through-the-glass-of-the-incubator cell phone picture.

Being "cradled" by Mommy

Elsie's doctor went over the results of the latest brain ultrasound with us. We saw the pictures from today's ultrasound in comparison with her first ultrasound, and even for a non-medical person like myself, it was easy to see the difference. The swelling in her left ventricle has gone down quite a bit, and while there is still some swelling and bleeding on both sides, Dr. Yoder said that he was quite optimistic, that things were definitely not as bad as they initially thought. Can we get a hip-hip-hooray?? They will do another ultrasound at 30 weeks, and again at 36 weeks. The 36 week ultrasound is where they will get a clear picture of what specific problems the baby might be at risk for. But that's 10 weeks away, and until then, we will keep praying and have faith that everything will be ok.

You probably think I'm done with the good news for today, but I'm totally not. I'm sitting here at the computer, and my eyes keep wandering across the table to a large stack of bills. Not medical bills, although I cringe to think of the bills that are probably on their way to us right now. Dang helicopter. No, this stack of bills is money. Greenbacks. Clams. Dough. Moolah. Coins and bills and checks, all from people that I don't know or haven't seen since I quit my job when Evje was born 20 months ago. Clayton's cousin Denise, my former co-worker, generously offered to have a fundraiser luncheon at my old workplace in our behalf, and it was held today. I can't even express my gratitude and astonishment at the generosity and kindness of these good people. It's taken me like 20 minutes to write this little paragraph, because I can't wrap my brain around it. I can't comprehend it. Denise told me that one of her students said something like, "I know that this isn't much, but it's all the money that I have." There are checks signed by people that I don't even know. Gift cards and kind notes and words of encouragement and offers of prayers in our behalf. Food was made by so many good friends and family to feed the masses at this luncheon. To all of you, no matter how big or small your contribution, it means the world to us. Thank you doesn't seem like enough. I wish there was some way we can repay you or show you how grateful we are. Again, I'm having trouble expressing all of the thoughts that are racing through my head, and I feel like I should say more, but Clayton just told me, "Words will never be enough." So I'll end my post today with a simple thank you to the staff and students at Alpine Academy. May you be blessed in your lives as you have just blessed us with your compassion.

Tuesday, January 22, 2013

January 22

Another good day! Elsie had a messy diaper this morning, her first since they re-started feeding her breast milk. This is a really good sign, meaning that her intestines are anatomically correct and are now working as they should. The dr said that he was really surprised by the results of her intestinal exam last week; he thought for sure that she would need some kind of corrective surgery, but he was pleasantly surprised to be wrong. Hooray for poop!

Another first: Elsie's eyes opened! Unfortunately, she was fast asleep while I was there today, so I didn't get to see them. But the nurse said that one eye opened last night and the other opened this morning. We can't wait to see our girl's pretty eyes.

She is still recovering at the incision from her heart surgery. There are 7 tiny stitches on her back, but she is healing well. The tiny metal clip that they used to close the blood vessel will remain in her body for the rest of her life. Don't worry, it's too small to set off a metal detector.

Due to the healing incision on her back, and also because of some lung issues, Elsie has been spending a lot of time on her tummy. She seems to be a lot more comfortable in that position. Her little premature lungs are struggling with inflammation, but could be a lot worse. The doctors are considering giving her small doses of steroids next week to help build her lungs more quickly, because the sooner she can get off the ventilator the better. Ventilators, while necessary to help tiny babies breathe, cause lung damage and scar tissue.

Sometimes I feel like all that I do lately is thank people for kind things that they have done for us. We have such a great support system, and despite the heartache of not having baby Elsie at home with us, we are really doing well. And I KNOW that Elsie is doing so well because of the hundreds of prayers that are offered in her behalf every day. Thank you for praying for our sweet baby. May you all be blessed for the countless ways that you have served our family. Thank you.

PS Another tender mercy: we received the bill in the mail today for our 20 week ultrasound, where we found out that Elsie was a girl. Hard to believe that that was just over a month ago. Anyway, the bill that we were expecting to be over $200 was somehow reduced to a measly $25.44. Definitely a miracle. Thank you again.

Sunday, January 20, 2013

January 20

Elsie continues to be stable and is doing well. They started feeding her breast milk again yesterday, and the nurse said that they heard bowel movement sounds through the stethoscope, which is good, and hopefully means that she will be able to digest the milk this time. She is getting 3ml every 6 hours. She has also gained some weight; when I held her momentarily a week ago to get weighed, she was down to 520 grams, which is less than 1 pound. But today she was up to 550 grams, which is about 1 pound 4 oz. Her initial birth weight was 570 grams, or 1 pound 6 oz. Weight gain is good!

Elsie spent some time on her tummy today while we were there. The nurse said that she seems to be more comfortable in that position, which made me laugh because big sister Evje almost always sleeps on her tummy. It's probably more comfortable for Elsie because the incision from her heart surgery is on her back/side, so most likely it doesn't feel so great to lay on top of the stitches. Here's a picture of the incision, which we saw for the first time today, and it surprised us that it was so long. I was picturing something a lot smaller, but hey, they got in and got the job done on a tiny baby, so I shouldn't complain about how big the incision is.

Here's another picture or two of tummy time. Her face is looking soo much better; the bruises are almost all cleared up. And the nurse said that she wouldn't be surprised if her eyes opened up soon, as they've seen her little eyeballs wiggling around under her eyelids. The skin on her back and some other areas looks kinda scaly and dry, but it's all part of her getting used to the dry outside world, as opposed to being nice and wet with amniotic fluid.

I know she's still kinda scary looking, but it's a huge improvement from when she was born. And no matter what she looks like, she's still our beautiful baby Elsie.

Friday, January 18, 2013

January 18

 My first pregnant belly, April 2011

Another uneventful day today, which means it was a good day. Elsie continues to remain stable after yesterday's surgery. Her blood pressure is back to normal, but she is still receiving pain medication. Her chest tube, which allowed drainage of any air that might have bubbled up during the surgery, will probably be removed tomorrow. And they will probably begin feeding her breast milk tomorrow or Sunday, and hope that she will be able to digest it better this time.

I've been thinking over the past week or so about different pregnancy things that I didn't get to/have to experience this time around. Every once in a while, I'll feel a bubble or something digestive-related moving around in my tummy, and for a brief moment of forgetfulness, my hand will reach down to feel the baby that used to be safe inside me. And then, I remember. She's not safe inside me anymore. Clayton only felt her moving a few times. I never saw her moving within me; you know, like when you're taking a bubble bath and all of a sudden, an elbow or a foot is jabbing you and you can see it moving, like there's some kind of alien inside you struggling to get out. I didn't have to drink that nasty sugar drink to test for gestational diabetes, lucky me. I bought a pretty maternity dress that I was saving until I was too huge for my other maternity clothes, and I never got to wear it. I was never so huge that it was uncomfortable; although for the first week or so after Elsie was born, I found myself doing the pregnancy-squat when I needed to pick something up off the floor. And then I remembered, "Oh yeah, I can just bend over now like normal people." One tender mercy that I have noticed is that, even before I was pregnant and especially during the last week or two of this pregnancy, I would have a hard time sleeping due to back pain. After I got up in the morning, it would usually go away, but now ever since Elsie was born, the back pain while sleeping has completely gone away. I never had the baby kicking or pressing on my bladder so that it felt like I had to pee every ten minutes. I never had that uncomfortable feeling of not being able to draw a full breath because there wasn't enough room to fully expand my lungs. I didn't get to have a maternity photo shoot like I did when I was largely pregnant with Evje, nor did we do a newborn photo shoot when Elsie was born. I'm sure we'll get some family pictures taken when Elsie goes home or maybe when she's not hooked up to so many machines, but it's different. I didn't have anybody make those comments that they think are so funny, like "Are you trying to steal a basketball under your shirt there?" or "You haven't had that baby yet? You look like you're going to pop it out any second now!" In fact, I've had a few people confess to me that they didn't even know that I had been pregnant. These people were probably a little unobservant, or maybe they just thought I was eating too many doughnuts.

I never had the excitement you feel when you are going into labor at the correct time, and the sweet anticipation of bringing a new baby into the world with the one that you love. I felt dread and terror when I went into labor. That's not how it should be. But I've learned over the last two weeks that life does not always go how YOU think it should be. My pregnancy and labor & delivery of Elsie did not go according to plan. But wait. It didn't go according to MY plan. But it did go just as it should go, according to HIS plan. God is in charge, not me, no matter how carefully I plan my life. And as scary as it is to not be in control, we are learning to put our trust in Him. He is in control and He knows what He's doing.

Sweet baby Elsie, as much as I wish that I could have gone through the full 40 weeks with you safely growing inside me, that's not what happened. And I'm trying to understand, and to be strong, and have faith and  courage that everything will work out. Because it will work out according to His plan, no matter what happens. Happy two-week birthday, Elsie!

Thursday, January 17, 2013

January 17

Elsie came through her PDA ligation surgery today to repair her heart murmur with flying colors. Clayton and his dad were able to give her a priesthood blessing last night. I wasn't feeling terribly worried until this morning, when the surgeon called to get my official consent to operate. He told me that the biggest risk was the chance of her blood vessel tearing, which could cause her to bleed to death very quickly. He said that the vein was extremely delicate, almost like wet tissue paper, and that with her body being so small, if the vein tore then she could die within two heartbeats. What am I supposed to say to that?? "Oh sure, that sounds great, go right ahead, just try and be careful." Ugh. Doctors.

So after that bombshell, I was pretty scared and cried most of the way to the hospital, sure that I would never see my little girl alive and well. But, lo and behold, before I even got to the hospital parking lot, the doctor called me again and said that they were already done, and that Elsie was fine. I love doctors!

The operation was performed through a small incision on her left side. They spread her ribs apart, moved her left lung out of the way, and somehow reached the vein and clamped it shut. Her blood pressure is a little low, so they are giving her medication to bring it back up, and she is also receiving pain medication to allow her to rest and heal without being in pain.

Thank you for your many prayers, kind words, and positive thoughts. We couldn't do it without you!

Recovering after surgery. The bruises on her face and head are mostly gone.

Tuesday, January 15, 2013

January 15

Not much to update today; both Clayton and I have come down with horrible colds, courtesy of Evje, and so we were unable to visit Elsie today. I did call the hospital and spoke to both her doctor and her nurse. The nurse, whom we LOVE, was quick to reassure me that Elsie was doing great and that we were doing the right thing by staying home when we are sick. No need to pass these yucky germs around, especially in the NBICU.

The doctor informed us that they are looking to perform Elsie's PDA ligation on Thursday or Friday. That means surgery to close the vein that is causing the heart murmur. We knew it was coming eventually, but didn't know it would be happening so soon. The surgery is not invasive, and the risks are few, but it's still scary. The heart surgeons from Primary Children's will be coming to the U to perform the surgery on Elsie and one other baby in the NBICU. The hope is that with her heart murmur fixed, she will gain strength and be able to heal in other areas of her body.

We are hoping that Clayton will have recovered enough from his cold to give Elsie a priesthood blessing before her surgery. Please pray for him. Please pray for my tiny baby, that she will have the strength she needs to go through this surgery.

Our family has generously set up a fund to help cover medical and traveling costs. Donations can be made at any Zions Bank location under the name Ruth Sagers or by calling 1-800-840-4999. The last four digits of the account are 2412, in case the bank has trouble finding the account. We have already been amazed and overwhelmed by your generosity in so many different ways. Thank you for helping our little family during this difficult time.

This is Daddy about to take Elsie's temperature.

Monday, January 14, 2013

January 14-- Roller coaster ride

Today was crazy but good. I went to the hospital bright and early to be there while Elsie was transported to PCMC. Although we were just going through some hallways and elevators, she was "Life Flight"-ed; at least, that's what they call the transport team. In reality, it was a tiny incubator on top of a gurney that had all of the hook-ups that Elsie needs, such as oxygen, and all of her monitors. They hooked up all of the equipment onto the gurney and then carefully lifted Elsie into the incubator. Then we said our goodbyes to Elsie's sweet nurse and walked through the hallways and through the "bridge" that goes from the U to PCMC.

Once we got there, we went into the exam room where she was transferred from the incubator onto the exam table. And then she had basically a colonoscopy to determine what was causing the blockage. From what they could see, it appears that she is just backed up with meconium. Her intestines are very small and seem to not be doing their job yet to move the meconium along. They could not see any incomplete bowels, where the bowel might not have been fully formed. So as of right now, she does not need surgery to fix her intestines! She received an enema to try to break up the blockage, and will probably need a few more. And, even more exciting, was that by the time she was put back into her regular incubator, she had a little bit of poop in her diaper. Who knew that we'd be so happy over a poopy diaper!

Because she does not immediately need surgery, we were informed that she would be going back to the U, since space at PCMC is limited and saved for babies who will need immediate surgery. After all of my worrying and silly concerns about moving, we were going back. For now. Who knows, we might be switched to PCMC sometime in the future, and that's ok. Elsie handled the transfer like a champ, didn't need any additional oxygen or anything else that would signal distress. We are happy to be back at the U for now and were so glad to get good news today. What a crazy roller coaster ride our life has become.

Little t-shirt that we were given from the Life Flight transport crew.

Sunday, January 13, 2013

January 13

We were informed today that Elsie will be moving tomorrow (Monday) to Primary Children's Medical Center, where she will undergo an exploratory examination to determine what is obstructing her intestines. There is either a blockage of meconium (fetus poop) that is not allowed anything else through, or else her intestines have not yet fully formed into a tube, and this is causing a blockage. If it turns out that it is her intestines and not just meconium, she will need surgery to correct the problem. Currently, she is being fed through an IV that bypasses her stomach completely and sends the food directly into her blood. This creates a lot of work for her tiny liver, and long-term use of the IV feeding can lead to liver damage. So the sooner the problem is fixed, the better.

The thought of my tiny child undergoing surgery is absolutely terrifying. I don't know yet if they would do the surgery right away or if they would wait for her to get bigger. I suppose I will have more answers (and probably more questions, too) after the exam tomorrow.

Elsie will likely stay at Primary Children's for the next four months. The two hospitals, U of U and PCMC, are adjacent to each other and are connected by an indoor bridge, and preemies are often transported between the two hospitals, depending on their needs. PCMC does more of the surgeries and some other things; the nurse explained it to me today but I don't remember all of the details. I know one or two people who work at PCMC, and I know that they are excellent care providers and that my baby will be in the best care possible. At the same time, I hate that we are leaving the U (Alert, alert, whining ahead).We've only been there just over a week, but I'm comfortable there. I know where to go, what to do, and I'm recognizing more and more faces. I love Elsie's nurses. And I know that I will get to know Primary Children's, and I'm sure we'll love it there and become just as comfortable with the area and staff, but it's just more change for me to deal with. In this roller coaster ride that has become our lives, a little stability has been nice. And now this abrupt upheaval of changing locations, which shouldn't really be a big deal, is hard to handle. Ok, I think I'm finished whining for now. Don't be giving me any lectures of how change is good, or glowing reports of how we'll love Primary's, because rationally I know that we will love it, but I'm not rational right now!

To end things on a more positive note, I got to hold our sweet baby in my hands today. The nurse was finishing up Elsie's "cares" right as we got there tonight; tasks that are done on a six hour basis, such as changing her diaper, manually taking her temperature, feeling her pulse in various locations, and weighing her.  There is a scale actually on her bed in the incubator, and to take her weight, you lift the baby so that the scale can calibrate itself to zero, and then you set the baby down and it takes her weight. The nurse offered to let me be the one to hold her for a few seconds as the scale calibrates to zero. We didn't get any pictures, which makes me kind of bummed, but that's ok. It was like holding a feather. Her head and neck rested in one hand, and her hips and legs sat in the other hand. She has lost weight, which all newborns do immediately after birth, and now weighs 520 grams or just under one pound. She is so tiny and delicate. It was wonderful to hold her even for a few seconds. Someday I will be able to hold her close to me, and that, my friends, will be a happy day.

Good night sweet Elsie, may the angels watch over you tonight and always.

Saturday, January 12, 2013

January 11

We drove through an unexpected snowstorm last night to spend some time with Elsie. Had we known the weather was going to be so bad, we might not have gone, but we did, and eventually got to the hospital without sliding off the road. Much of the same news, including a second brain scan with the same results. It wasn't quite as hard to hear that as it was the first time. Elsie is also having trouble with her digestion, and currently has a tube to help drain excess gastric juices and air from her stomach. They will be doing some tests to try to determine the problem; if it is just that her stomach is way too immature to handle food, or if there is an underlying problem or infection. She is back on the higher-powered ventilator, but like I've said before, every day in the NBICU is up and down, one step forward and two steps back. I know I've said that before, and it's true, but even so, it's hard to receive discouraging news. We're trying to be strong.

Clayton and I have been finding ourselves in our spare time spending more time playing with Evje. She is such a comfort to us during this time. Every little hug is a moment to be treasured. I keep worrying about the effect that all of this is going to have on her. I know, kids are resilient and she'll probably not remember most of this, but it is still hard as her mother to watch her struggle with the changes. My heart breaks a little each time I drop her off at somebody's house.

We continue to be overwhelmed with the support of our family, friends, and even people that we don't know. Thank you for the outpouring of love, especially those of you who have reached out to us as strangers. It really means a lot to us and helps on the hard days to know how many people are praying for us and thinking about us. Thank you to the angels who came and cleaned our house while we were gone, even if I was embarrassed for you to see the messy state of our house. Thank you for the meals and treats that have been thoughtfully delivered. Thank you for watching our dear Evje for hours at a time. Thank you for the financial help. It is so humbling to accept so much that has been given to us, but we know that we couldn't do it without you. "Thank you" doesn't seem like enough, but it's all I can offer to you. Thank you.

Thursday, January 10, 2013

January 10

Holding Mommy's hand
Elsie's doctor went over the results of her brain ultrasound with us today to explain the severity of bleeding in her brain. On a scale of 1 to 4, 1 being minor and 4 being very concerning, the right side of her brain is a 2 and the left side is a 4.

That's all I have to say right now.

Wednesday, January 9, 2013

January 9

Elsie had a brain ultrasound and an EKG done on her heart today. The EKG was done because she has a heart murmur, or a PDA. This is extremely common in preemies. There is a small vein coming off the aorta of the heart that during a typical full-time childbirth, will close on its own. It generally does not close by itself when the baby is premature. The PDA can be treated and closed by medications, or by surgery. The medications, obviously, are the first choice. But, before you can administer the medication for the PDA, they needed to do an ultrasound on her brain to evaluate how much bleeding is going on in there. The nurse practitioner explained it all to us and I mostly understood; something about how you can't give her the medication for the PDA if there is too much bleeding in the brain. We will find out the results from both procedures tomorrow.

She continues to be stable but has needed a bit more oxygen, due to the heart murmur. The bilirubin lights are back on, to help prevent jaundice. The nurses explained that everything in the NBICU is always up and down. She'll have good days and bad days. She'll go on and off of the ventilators, and same with the lights. They have stopped feeding her milk, as she wasn't digesting it very well, but they'll try again soon.

I changed her diaper and took her temperature today. The temperature-taking wasn't so bad, but changing the diaper was scary. There are so many tubes and cords and monitors to work around.

Here is a picture that I took yesterday. You can see the bruising across her nose and on her head. It's actually improved quite a bit. And her skin is not as red and see through as it used to be. Her eyes are still fused shut. Sleep well tonight, sweet baby.

Part three-- the end, and the beginning

After my water broke on the helicopter, and by the intensity of my contractions, I pretty much knew now that this baby was coming tonight. But I wasn't ready to have a baby yet! This wasn't how things were supposed to happen. All I had with me was literally the clothes on my back--which happened to be a very large hospital gown and nothing else. No overnight bag, no treats for the nurses, nothing. I didn't even have shoes. I definitely hadn't shaved my legs or painted my toenails or done any of the normal preparations a woman likes to do before the majority of her body is on display. Yeah, I know, they're medical staff and they see all sorts of things every day and don't care, but I cared.

The rest of the helicopter ride was totally awesome. I saw the lights of the city and really enjoyed the view. Just kidding. I spent most of the ride howling in agony and only saw the lights for a second as we were descending onto the hospital roof. I wish I could say how cool it was to ride in a chopper, but things being as they were, I didn't have a chance to fully appreciate it. Or pay attention to anything besides contractions.

We landed on the roof and I was wheeled into the hospital. As we rushed into the Labor and Delivery unit, I saw that my parents were waiting anxiously in the hallway. My dad called out to me to let me know that they were there, which was very comforting. I love my parents.

Delivery room. Lots of nurses, doctors, hospital people. None of them gave me what I wanted, which was something to ease my pain, and some water. Even some ice chips would do. My throat and mouth were as dry as a desert, which seems like such a trivial thing to worry about while in the middle of such a traumatic experience, but it was seriously uncomfortable. And how could I scream with pain if my mouth was dry?

But scream I did. I screamed like I've never screamed before. You'd think that it wouldn't be that hard to push out a baby whose head is only slightly bigger than a golf ball. However, it was the most excruciatingly painful thing I've ever done in my entire life. Looking back, I think that a lot of the agony came from mentally knowing that this baby was not ready to be born. I wanted so much to protect her and keep her safe inside my womb. But my body was trying its hardest to expell her. It only took about 3 agonizing pushes to get her out, and I can't say that I was entirely focused on pushing my hardest, because I was distracted by the blinding pain, but I did my best. There was a momentary sweet relief after she was born, then I glimpsed the back of her bloody head before they whisked her away, and I started sobbing.

The placenta was delivered, and I only slapped away the hand of the doctor who was shoving on my uterus once.

After a short time, I was wheeled into a recovery room where I was joined by my parents and Clayton, and evenutally my sister and brother. Clayton and my dad gave me another blessing. I don't remember very much else that happened in this room, as I was very tired, physically and emotionally. I do remember that this is where Clayton and I agreed to name the baby Elsie Linda. Elsie was one of the few names that we had previously discussed and had mostly agreed on. And the name Linda is after my mom.It was a precious moment to see the expression on my mother's face when we announced the baby's name.

I didn't want to see Elsie at first. I was scared to see how I had damaged my precious child by letting her enter the world too soon. Thankfully, the nurses gave us a few warnings before we went in so that we weren't overly surprised at her appearance. Due to her extremely fragile skin and blood vessels, her head and face were very bruised from the trauma of childbirth. They were almost black with bruises. And because her skin is so delicate and translucent, she appeared to be red all over (where she wasn't black with bruises), and you could almost see right through her skin. Of course, she had multilple tubes and monitors attached all over her body. Her limbs and torso were skinny, too skinny, having had no chance at all to develop any body fat. But her hands and her feet, although tiny, were completely perfect. Here was something that I could recognize. Ten tiny finger and ten tiny toes. Here was something that helped me realize that no matter how many tubes, no matter how scary the bruises, no matter how many difficulties were coming down the road, this was my little girl. This was our little daughter. Born too early, yes, but by no fault of her own. A fierce motherly pride swelled inside me, and I cried in happiness and sorrow to see our little Elsie.

 Elsie Linda Sagers
Jan. 4, 2013, 10:12 pm
1 pound, 4 oz.
12.6 inches

Tuesday, January 8, 2013

January 8

I know I'm not caught up with the labor & delivery story, but I just wanted to share today's victory.

Clayton and I got to the NICU and scrubbed up. As we went through the doors into Room 1, we knew something big was going on because the walls & lid to Elsie's incubator were removed. We hurried over, and the nurse practitioner told us to hurry and take a picture if we had a camera. As we looked down, we realized that Elsie's "sunglasses" were off, and her breathing tube was gone. Our little fighter had her ventilator turned off and was breathing on her own! But they were just about to put the breathing tube back in, so I hurried to take a picture with my phone, and then the nurses ushered us out. We waited anxiously outside and watched through the window. It was nerve-wracking to hear alarms and see lights flashing, but the nurses were calm, so I tried to be calm. After they reinserted her tubes and turned the ventilator back on, we were allowed back in.

The nurses explained that the ventilator was on the very lowest setting, and so they took her off it to see how she would do. She was able to breathe on her own. Apparently, she is ready for the next step, which is a CPAP, but her little nose is too tiny for it to fit. So until she gets a little bigger, she will stay on the ventilator's lowest setting with periodic "breathing practice."

I was thinking that she'd been off the ventilator for a few minutes, so I was stunned when I asked the nurse how long she'd been off. Three hours. Three hours!! She had a few episodes of what they call "A's and B's", or apnea and bradycardia. Apnea is when you temporarily stop breathing, and bradycardia is the slowing down of the heartbeat. But this is normal and to be expected, and she was able to pull out of it on her own. There were also a few times when she had to be stimulated to breathe. It sounds scary to me, and I'm kind of glad that I wasn't there to observe, because I think I would have been really scared. But the nurses knew what they were doing, and obviously wouldn't have put her at risk. They were all very pleased with her progress, as were her proud parents. Way to go, baby!

While we were waiting in the hall, we were surprised to see one of the helicopter nurses who had flown with me. I think she was the one whose hand I kept trying to hold, but I'm not sure. She instantly recognized Clayton and asked how we were doing. She said that she tried to check on Elsie whenever she was in the area, and was happy that she was making progress. Then she said goodbye and left. Moments later, she came back and laughed that she hadn't realized that it was me, but was glad to see that I was also doing well.

We had a very nice visit from Clayton's cousin Chantel and aunt Kathryn, and were excited to share Elsie's progress with them. Chantel had 28-week twin boys six years ago, and they had been in the same hospital. She gave us a basket full of items that she had found to be useful and comforting when she had been in our shoes, six years ago. She also made a cute little nametag that we taped onto Elsie's incubator. It was all so thoughtful and so kind. Throughout these last four days, we have been overwhelmed by this great outpouring of love from so many. We have an amazing support system, and want you all to know that if we didn't have you, our journey would be so much more difficult. Thanks for all that everyone has done, big and small. It means the world to us and our girls.

A father's story

This one's a real tear-jerker. Clayton, Elsie's proud daddy, wrote down his experience of what happened during that crazy weekend. Here it is.

I never have realized how quickly my life could change from being very normal and routine to being very chaotic and out of control. As many of you know, our second daughter was born 17 weeks early on January 4 2012. She weighed 570 grams. I feel as though I need to type out my thoughts, as I often keep my feelings inside and unable to fully express my thoughts. So consider this as the first chapter of my story as a father of a premature daughter.

It all began on Friday evening while eating dinner. I had been asking Ruth how she had been feeling since Evje and I had both recently gotten over a cold. She expressed having some back pain and also a small sore throat. She then hesitantly stated that she may have felt a contraction or two. We quickly cleaned up dinner, gathered some things, and dropped Evje off at my Dad’s flower shop as he was preparing for several funerals the next day. We left the lights on at home, thinking that at least one of us would be coming back to the house soon.

While at the hospital, we learned that not only was she having contractions, but she was dilated to a six. Nurses began to swarm around Ruth’s bedside, tipping her bed so that her head was angled down and hooking her up to an IV. The healthcare staff began to ask us questions and told us about doing everything they could to save the baby, as there was a very good possibility that our baby would have some sort of disability. Suddenly our "planned c-section spring baby" was turning into an emergency winter baby with very good possibilities of long term complications.

 A helicopter was now on its way to take my wife into Salt Lake. I used to think that I was a calm and stalwart person when it came to this kind of things, but this was affecting me in a way that had never affected me before. I remember talking with both my parents and Ruth’s parents in the bathroom at the hospital, and then when I was done, openly sobbing. This was something I had not done in a long time. I was trying to be strong for my wife and did not want her to see how hard I was taking the news. Somehow I was able to stay composed enough to give Ruth a blessing. I watched as they loaded her onto a helicopter and then walked back to my car. I remember the nurses kept asking me if I was OK and if I had someone to ride in with. I guess that I had not done a good job at hiding my emotions. I drove off from the hospital and watched the helicopter take off. (I later learned that this is about when Ruth’s water broke).

The drive to the hospital was a blur. I had feelings of guilt, anger, sadness and anxiety. Somehow I reached the hospital alive. Ruth’s parents met me there, where I learned that Ruth was now delivering our daughter. I was able to see Ruth again after the birth, and we decided to name the baby Elsie Linda Sagers. It was the only name that we had both talked about and agreed on. (I had already decided on the name while driving in to the hospital). Ruth was given another blessing by her father. Ruth’s brother showed up later and had been through similar experiences, knowing some of the anxieties we were feeling. When we finally did see Elsie, her face was completely black, having been extensively bruised from the delivery. She seemed so frail and fragile and I felt very helpless not being able to touch her.
After what seemed like a short nap later that night, I woke up the next morning to the realization that it was all real and not just a nightmare. I suddenly wanted nothing more than to see Evje again. She became my tangible anchor that I could hold on to and hug; something I could not yet do with Elsie. When I saw her later that day, I held her for several seconds, not wanting to let her go. Several people said they could take her that night, but more than anything ,I needed to have her close to me. That night after I had put Evje to bed at home, I felt a strong presence that my late mother who had raised five boys was now watching over my little Elsie. This thought helped to give me comfort.  

 Over the next couple of days, we were embraced by so many family and friends. People began to come out of the woodwork that had also had preemies. They had told us their stories. It began to give us hope that there was light at the end of this long and scary tunnel. I thanked so many people that the word became almost indifferent. I wish I could write a personal note to each and everyone who has helped in so many ways. For anyone who is reading this now, I thank you in behalf of my family from the bottom of my heart. Thank you for your thoughts and prayers. Thank you for your fasting. Thank you for the help watching our precious Evje. Thank you for your hugs. Thank you for your support. Thank you for your stories. My desire is that by writing this down, someone else that goes through a similar experience can find comfort and hope in my story. I know our journey is just beginning, but I now have hope that someday we will find strength from our current trials.

Monday, January 7, 2013

How it all started--Part two

After the nurse announced that I was already dilated to 6 centimeters, the room was suddenly filled with nurses and medical staff. They tipped my bed so that my feet were up and my head was down, trying to remove as much pressure off my cervix as possible. An I.V. was started with various drugs to try and stop the contractions. The effects of one of the drugs and also having my head down so low was that I quickly became very hot. My face felt like it was on fire. The nurses put wet cloths on my face and neck to try to keep me comfortable, but I could barely feel the coolness of the water.

During one quiet moment when the room is mostly empty, my sweet nurse finds a hospital staff member who holds the priesthood, and he and Clayton give me a blessing. I wish I remembered more of what was said, but the Spirit that I felt was comforting and reassuring that everything would be ok.

The rest of my stay in Tooele's hospital is a bit of a blur. The doctor kept talking about transferring me to Salt Lake City, to the University of Utah hospital. I don't know if I quite understood the urgency at this point. I was envisioning a quick ride to SLC in an ambulance so that the doctors there could work their magic to stop my labor. I had no idea what was about to happen.

"Nope, no ambulance," said the doctor when I asked. "You're going in a helicopter."

Sooo . . . maybe things are getting a little serious if they're talking about helicopters.

More time speeds by. Clayton has called both of our parents to let them know what was going on. I casually mentioned to him that he should let my sister Mona know that I probably wasn't going to be able to make it to the movies with her tomorrow like we had planned.

Contractions are starting to become quite painful at this point, and for some reason, seem to be coming closer together. Weren't those drugs supposed to stop my contractions? Turns out that that wasn't going to happen.

The helicopter arrives. Several very kind and competent nurses and medical staff from the helicopter came in and hooked me up to their various monitors and I.V.s

I am on a gurney, being wheeled out of the hospital, Clayton anxiously following close behind. In my fear, I ask the helicopter people if I get to ride inside the helicopter or if I have to be strapped to a board outside the helicopter, like on M*A*S*H*. Everyone but me laughs.

Well, I've never been on a helicopter before! The only ones that I've closely examined are the ones I've seen while watching M*A*S*H*, and those patients clearly ride on the outside!

I might be getting a little irrational at this point.

There is some kind of difficulty in getting the gurney loaded onto the helicopter. I nervously hope that this is not an omen of things to come. Clayton is unable to ride with me, and so we say goodbye. After I am safely loaded (inside the helicopter, not outside, which is nice since it was probably like 10 degrees or less in the frigid January weather), I get a large set of earphones placed on my head to protect my ears from the loud noise of the propellers. A nurse sits next to me and monitors things while we take off. She's busy doing her job, but all I can think about is how scared I am, and that I really want someone to hold my hand during my contractions. I wiggle one hand out from underneath where I have been strapped to the gurney, and plead for her to hold my hand.

Contractions hurt. I'm almost embarrassed by the painful noises that I'm making, but it hurts too much for me to care what I sound like. Plus the helicoptor people are all wearing headsets, so hopefully they can't hear me anyway.

Soon after we take off, I feel a sudden gush of liquid between my legs. "Ohh, so that's what it feels like when your water breaks," I thought. Seriously in panic mode now, I yell to make sure that the nurse hears me. "MY WATER BROKE! MY WATER BROKE!"

Sunday, January 6, 2013

How it all started--Part 1

“It’s just false labor,” I thought to myself as I slowly made dinner. “Braxton-Hicks contractions, or whatever they’re called.” Maybe I ate something that was making my stomach upset. It was probably just my overactive imagination at work, but it kinda felt like I was having contractions.

 I was 23 weeks along with our second little girl, due May 2. I was so excited that our oldest daughter, 20 month old Evje (pronounced Ehv-ya) would have a little sister so close in age.

I hadn’t been feeling well all day, but I thought that I was probably just catching the small cold that Clayton and Evje had been fighting earlier that week. My throat was a little bit sore, and I’d had a headache for a day or two. I took a nap while Evje napped, hoping that it would help, but I still just wasn’t feeling up to par. I can’t even explain what exactly it was, but something felt off. I thought I was just imagining things, but deep down, I was starting to get a little scared that something was wrong.

As I was fixing dinner that night, I realized that I was having small contractions. I tried to convince myself that I was imagining things, that it was nothing. I didn’t even want to tell Clayton, because I didn’t want to make a big deal out of something that was quite obviously nothing. I just needed to rest and then I would feel better. Luckily, I decided to stop being a baby and just told Clayton while we were eating that it kinda maybe sorta felt like I was having contractions.  But probably not.  Just maybe. His fork paused in air on the way to his mouth, and a puzzled look came over his face. “Contractions?”

We discussed the situation and how I was feeling, and he suggested that I call my doctor’s office, but it was after 5pm and the office was closed. Feeling foolish and mostly convinced that I was just being silly over nothing, I took the phone into the bathroom where it was quiet and called the women’s center at our hospital. Asking to talk to a nurse, I explained what was going on, and as I finished talking, my voice broke when I admitted, “I’m scared that I might be going into labor.”

The nurse  calmly advised that I come get checked out, as I might possibly have a urinary infection or a yeast infection or something else that was causing the contractions. It still seemed to me like I was making a big deal out of nothing, but we loaded Evje up in the car to go hang out with Grandpa Joel at the flower shop for a few hours while we got checked out. We left the dogs inside, and the plates and residue from dinner still on the countertop, because after all, we were going to be home in just a few hours, right? I don’t think we even packed a diaper bag for Evje.

We got all checked into the hospital, and I was hooked up to various monitors. I was indeed having contractions. The nurses asked me lots of questions and called the on-call obstetrician to let her know that she would have to come in to assess the situation. After about 45 minutes, the nurse reached inside me to check to see if I was dilating. A concerned look crossed her face and as she withdrew her hand, she announced that I was dilated to 6 centimeters. More than halfway to the 10 centimeters needed to deliver a baby. “Are you kidding me??” I cried out.