Uncle Darren's Visit

I thought I'd post a quick update before heading to bed this evening. We went to visit Emily again today and met up at the hospital with my parents and my brother Darren who was in Chicago for a business meeting. Darren lives in St. Louis, so it was great to see him again, to introduce him to Emily, and for Logan and Audrey to play with Uncle Darren in the hospital playroom.

Emily is now 3 lbs 1 oz. We're excited that she has passed the 3 lb. mark! Also, Emily's blood counts are all fine since her blood transfusion on Sunday, so that was successful. She has, however, continued to have oxygen desaturations and even had one this afternoon while we were there. One of Emily's female doctors talked to me and said that they are still trying to figure out why these are happening so often. She said that they did a chest x-ray yesterday on Emily and found that her lungs looked a little "wet" which sometimes happens when the baby is taking in too much fluid and can have an effect on her oxygen saturation. They have decreased the volume of her feedings and are now fortifying the breastmilk so that she's still getting the same nutrition, just less volume. Maybe this will help cut down on the de-sats. We can hope so. Once her de-sats decrease, then she can come off the nasal cannula and oxygen that she is receiving.

Overall, though, this doctor said most parents would trade places with us in a heartbeat if the worst thing we have to worry about is de-sats. She said that overall Emily is doing really well, and this concern is a relatively minor one. That helps keep everything in perspective.

Blood Transfusion

This morning on our way home from church, we got a telephone call from Dr. Boos. Emily had a few more de-saturation episodes last night and a pretty big one this morning, so Dr. Boos ordered a few blood tests to investigate. Thankfully, Emily didn't show any signs of infection (her white blood counts were normal) but her red blood count was low. His recommendation was that we give Emily a blood transfusion this afternoon. He explained that preemies often can't replace their blood cells as fast as they are using them, so it's not uncommon for preemies to need a blood transfusion. He's also hoping that by elevating her red blood count, hopefully we'll see less frequent de-saturations. Of course, with any blood transfusion there is a small risk of the baby developing an infection, but at this point it is more risky for Emily not to have the transfusion, so we told him to go ahead with it.

Luke and I went to this hospital this afternoon to be with Emily while she was receiving her blood (through an IV in her leg). She was not allowed to eat 6 hours before or after the transfusion, but she seemed calm. She did have one de-saturation episode while we were there, which was a little discouraging for me, but the nurse said she had only received half of the blood at that point and that it's still common for preemies to have de-saturation episodes, even with full blood counts.

Please continue to pray for Emily. Pray that she would not develop an infection from her blood transfusion and that we will see fewer de-saturation episodes.

A Weekend with Emily

Most new moms get to spend all their time with their newborn, but with a baby in the NICU, my time spent with Emily is precious and limited. Yesterday afternoon, I packed my suitcase and drove to Comer Children's Hospital (at the University of Chicago Medical Center) to spend a full 24 hours with Emily. They have sleep rooms just steps away from the NICU, so I had a bed to sleep in and could spend all of my waking hours with Emily.

I got to "kangaroo" with Emily twice this weekend. Kangaroo care is a term used for holding a preemie skin-to-skin. Here's a definition from about.com:

Definition: Kangaroo care is a way of holding babies skin to skin with a parent. In kangaroo care, a baby is undressed down to the diaper and placed on a parent’s bare chest. A blanket is placed over the baby for warmth. Kangaroo care can be done with any infant who is medically stable. Kangaroo care has been shown to have several benefits for premature babies. It helps babies breathe and sleep better, gain weight more quickly, and have more stable temperatures.

I also got to spend hours singing to her, praying for her, changing her diaper, holding her pacifier while she sucked on it, talking to her, and working on her baby book while she slept. Precious moments, indeed. She sleeps a lot yet, but every hour or two she'd wake up for 15-20 minutes and I was so thankful to be right there to give her a little "hello" when her eyes were open.

I spoke to Dr. Boos again today, and he said Emily is still doing great. She is having a couple of "de-saturation" episodes every day (the oxygen level in her blood drops) but with a little intervention from the nurse, she comes right back out of them. He says that this is just part of being so premature, and it is something she will hopefully grow out of by the time she's 35 weeks gestational age. (She's 30 weeks now.) They are keeping an eye on her though and keeping track of how often it happens.

Dr. Boos and the nurses tell me that it's a great sign that Emily is so active and alert, and Dr. Boos even told me that Emily is "one of the healthiest babies in the NICU," so that was very encouraging! Another doctor stopped by and introduced herself. She told me that Emily is one of her "favorites," so that was nice too.

Luke, Logan, and Audrey had an exciting weekend too. They went up to Michigan to Luke's parents' house and spent some time at the county fair. The kids got to see turkeys, sheep, pigs, horses, and a parade. It was a fun weekend for them as well.

Wide Awake

Emily is 2 weeks old today. Luke and I went to visit her this afternoon, and I got to hold her for almost an hour which was really nice. She was wide awake for the first 15-20 minutes, so we could look at her eyes and watch her respond to our voices. This weekend I'm planning to spend the night at the hospital in the sleeper rooms for parents and families. (Luke is taking Logan and Audrey to his parents' house in Michigan.) I'm eager to spend several hours with Emily. The nurses tell me I can even start some kangaroo care with her this weekend (holding her skin-to-skin).

And now for the update: Overall, Emily continues to do well. In the past two days, however, she has had a couple things that have caused the doctors to watch her a little more closely. She has had three oxygen desaturation episodes in the past two days, which means her blood oxygen level has dipped a little low. Also, her biliruben counts have gone up, so yesterday they put Emily back under the bililights. Both of these things are common for premature babies, but Dr. Boos told us that they are watching her more closely because these are new things for Emily. He said that if she has one more thing "out of the ordinary" we will do some lab work to see if there is an underlying cause, but for now they are just watching her a little more closely. No huge concerns yet; they're just keeping an eye on her. Please pray that these things will resolve themselves without need for further testing or concern.

On a positive note, Emily now weighs 2 lbs. 13 oz! We're happy to see her above her birthweight and continuing to grow.

p.s. I included a little video of Emily below. It's a little dark since the lights were dim, but I think you'll enjoy it anyway. You can really see how tiny she is compared to my hand. :)

Nine days old and doing great!

Here's our precious little Emily. She is 9 days old today and doing great! Isn't her hat adorable?! Thanks to my friend Kathy who sent it to me along with some super cute preemie clothes. Thanks, Kath!

See how tiny she is? My hand covers her whole back! Emily has been liking sleeping on her tummy with her little bum up in the air. I think it's adorable.

We have been so encouraged with Emily's progress. So far, we haven't had any setbacks or problems. They have been taking down her oxygen and she is breathing fine. In fact, on Tuesday one of the nurses started her shift and saw that Emily's nose cannula was off and lying above her head. She told us that she thought to herself, "I can't believe those doctors took her off her oxygen and didn't even tell us!" but actually Emily had taken it off herself. The nurse said that she had it off for a while and no alarms went off or anything, so she is really able to breathe all on her own! :)

Emily lost a little weight, as all babies do after they are born, and was down to 2 lbs. 7.5 oz. on Tuesday, but as of today she is back up to 2 lbs. 10 oz., only one ounce shy of her birthweight of 2 lbs. 11 oz. Yay! She has been tolerating her feedings really well so far. They started her at 1.5cc of breastmilk (I'm pumping every 2.5-3 hours around the clock so she can have all the benefits of breastmilk) and since then has moved up to 3cc ... 6cc ... 8cc ... and now is up to 11cc per feeding. The nurses give it to her through a tube that goes directly to her stomach. She has even had a few poops now, which is a great sign!

Luke and I have both been able to hold Emily a few times already. I love having her in my arms, feeling her move and breathe against me. Yesterday my mom also got to hold Emily which was a special treat for her.

Thanks again for all your prayers, emails, meals, and support. We are touched and blessed by how many people are lifting us up during this time. Please keep praying that Emily will grow and remain healthy. We praise God for what he has already done in her life, and we rest in the promise that we are all in the palm of His hand and never out of His care.

I'll leave you with one last picture of me holding Emily. Peek-a-boo, baby! We love you.

Welcome Baby Emily!

Hello! Welcome to our new blog. We thought with all the recent and upcoming changes in our lives, it would be nice to keep people updated with a dependable blog (the babiesonline site we used for our other children is frequently "unavailable").

We'll start with Emily's birth. Emily Kathryn Darling was born on Tuesday, Sept. 7, 2010. She weighed 2 lbs. 11 oz. and will be in the NICU for about 8-10 weeks while she continues to grow and develop. Although she came earlier than anticipated (born at 28 weeks), we are so thankful that she is in a nationally-ranked NICU with some of the top doctors and nurses in the country. Since she is no longer in the womb, this is the next best place!

I went into labor on Labor Day with contractions that were 3 minutes apart. We had to make a quick decision about where to go to get them checked out... my local hospital, or the University of Chicago Medical Center where my specialist practices. We went to Chicago and are thankful we made that decision. They tried to stop my labor through many interventions, but all they did was slow the contractions; they never stopped. I labored for 24 hours as they monitored me, but when they couldn't stop the contractions, my heart-rate wouldn't come below 120, and I started spiking a fever, the doctors discovered that I had an infection, which is why my body went into labor. Emily needed to be born immediately. It was safer for her to be born early than to remain in an infected environment. (As a side note, our daughter Brianna -- born and died at 23 weeks in 2008 -- was also born as a result of an infection that caused my water to break.)

It all happened very fast. They started prepping me for the c-section and gave me my second dose of steroids to improve Emily's lungs. Within an hour, Emily was born. Two doctors and four NICU nurses quickly whisked Emily away to an adjoining room where they took care of her.

Emily is doing remarkably well. They intubated her and put her on a respirator right away to help her breathe. Within a day, they moved her up to a CPAP machine. And on Friday they moved her up once again to a nasal cannula which delivers high-flow oxygen. This is 3 steps up in the matter of 5 days! She is breathing on her own now with just a little extra oxygen.

There was also some concern that she might develop an infection after birth since I had the infection before birth, but after 3 days of prophylactic (preventative) antibiotics, they looked at her bloodwork and she never developed an infection. They got her out in time!

Emily was under the bililights for the first 4 days to treat jaundice, but those lights got turned off yesterday because her bilirubin numbers are fine for now. They started feeding Emily yesterday using some of the milk I have been pumping and feeding it through a tube that runs through her mouth into the stomach/intestines. We pray she will tolerate these feedings well.

Yesterday, I got to meet Emily's doctor who will be following her case for the month, Dr. Boos (say: Bose). He was very encouraging and said that Emily is doing really well. He said "she's a superstar" and the fact that she has done this well this far should give us a lot of hope. We know that an extended NICU times -- like Emily will have -- include a lot of ups and downs, but today we are extremely thankful for her progress so far.

Luke and I have already gotten to hold Emily once, which was very special. She does cry in her incubator, but we're told that's a good sign. Crying helps develop her lungs and it shows she's a fighter! The first time I got to see her, I touched her hand and said "Emily... Emmm-i-leee" and every time I'd talk she'd open her eyes. The doctors and nurses say it's very important for us to talk to her because she recognizes our voices.

Back at home, I am recovering from my c-section and the kids are adjusting to having me back and a new sister in the hospital. Logan is eager to meet Emily, but no kids are allowed in the NICU so he'll have to wait quite a while. He started preschool last week (the day after Emily was born) and is enjoying that. Audrey is pretty oblivious to the fact that she has a new sister (whom she calls "Lolly") and remains to be a very busy and talkative 17-month old! Both kids were eager to see me when I got home from the hospital which really warmed my heart. Multiple times over the past two days, Logan has come up to me saying "I love you Mommy" and giving me a big hug.

We have been back and forth to the NICU every day so far. Now we begin the task of dividing our time between home and the NICU. It's hard having babies in two places at once. Thankfully we have parents who are willing to help out with Logan and Audrey so Luke and I can get away, and there is a Ronald McDonald house at the University of Chicago Medical Center that we can use for an overnight stay.

Ok, this update is long enough... I just wanted to let you know what was going on and thank you all so much for your outpouring of love and support! When I go on facebook or check my email, I am moved to tears with your love and prayers for our family. Thank you so much. And please continue to pray for Emily's health and development. We love her so much and would love to take her home with us in the next few months!