Christmas

Is anyone still checking this blog?? Sorry I've been missing in action lately... We've been busy, busy, busy with the holidays and all. And 3 kids are just frankly a lot of work! I wanted to post two quick pictures and let you know that we're still here and doing well. At Emily's dr. appointment last Thursday she was 9 lbs 2 oz!! She's growing, breastfeeding extremely well, giving me a 7 hour stretch between feedings at night, and is very healthy right now. She's a very good baby, and we were so thankful to have her home with us for Christmas.

Thankful.

Emily's Homecoming

I thought we'd share a few pictures from Emily's homecoming this past Monday. Better late than never, right?

At this point, we're all trying to get adjusted. Logan is interested in Emily -- he often asks where she is or what she's doing -- but she's just not that much fun for him yet. She sleeps a lot, and that's ok with him. I think he's proud to have two sisters though. We've been talking up his role as big brother, and I think he's going to be a great protector of his little sisters. Audrey, however, is very jealous! She wants me ("I want Mommy") all the time and is very whiny whenever I'm in sight. She wants to drink out of Emily's bottles and wants to be held whenever Emily is eating. Out of all three kids, Audrey is definitely the most work! We look forward to Audrey's daily nap time! :)

And Emily is a sweet baby girl. She is a good eater and sleeper and is generally a pretty mellow baby so far. She eats every 3 hours but only squirms or grunts a little to let me know she's hungry. Then she's awake for maybe 10-30 min. and falls back to sleep again until her next feeding. She had her first pediatrician appointment on Wednesday and now weighs 6 lbs. 3 oz! She's growing fine! Unfortunately, she picked up a cold on Thursday (probably from Logan and Audrey who have had drippy noses all fall!), and she has been congested ever since. I brought her back to the doctor on Friday to make sure it wasn't going to her lungs, but so far it just looks like nasal congestion. She tested negative for RSV, so that's good too. We have the cool mist humidifier, saline drops, and bulb syringe in frequent use. I hope she feels better soon.

Luke and I are just staying busy taking care of the kids. Three kids feels like a lot of work! Luke usually manages Logan and Audrey, and I take care of Emily. I'm trying to work out the breastfeeding, bottle feeding, pumping routine (which all takes 1.5 hours and starts over every 3 hours) and am trying to cope with very little sleep. Thankfully my mom has been here this past week to help with the kids, wash the bottles, and give me breaks to eat, take a shower, or nap.

Today was a chill-out-at-home, rainy day. It's so nice not to be driving back and forth to the hospital anymore! We are so happy to have Emily home!

Home

Blissfully exhausted

But, as of 5:30 tonight, after 62 days in the hospital...

Emily IS HOME!!!

To God be the glory, great things he has done!

Will write more soon.

And post pics. :)

The night before

We are so excited to bring Emily home tomorrow. These are a few things I'm looking forward to:

-Holding Emily without any cords or wires

-Introducing Emily to Logan and Audrey

-Having our family all together for the first time

-Not having to drive 5 times a week to visit Emily


We are ready. Luke and I took the required "Infant CPR" course last week and Emily passed her car seat test yesterday (she has to sit in her car seat for an hour without alarms going off to demonstrate she can sit upright without any problems). Bibs and burp clothes are washed, clothes are folded and hung, bottles are sterilized, preemie diapers are purchased, car seat is installed, and moses basket is clean and waiting for a new occupant.

This feels so different from the way I prepared for Logan and Audrey. When I got these things ready for them, I was hugely pregnant and ready for labor. In a way, I feel like we're adopting a baby that isn't ours. And when I think about Emily being "our" baby, it seems surreal. But maybe this is a more accurate picture... because all of our children (even those in heaven) aren't really ours. First and foremost, they are God's children. Emily is a gift, a loan, and we are so thankful for the opportunity to bring her home and nurture her, but ultimately her life is in God's hands.



Emily is coming home without any monitors or equipment. She has no major follow-up appointments scheduled at the hospital and no red flags for any medical problems. She is a success story. A gift. Thank you, Jesus!

Daddy's girl

Another day with no alarms. Emily is now 5 lbs. 7 oz. Still expected to come home on Monday. :)

Home is just around the corner!

These two little munchkins are eager to meet their sister!

Emily is now on a "5-day watch" which means she needs to have 5 days without any significant alarms going off. If she passes that, she will come home! The earliest date she could come home is this coming Monday! It's sooo soon!! Of course, if she has a de-sat or something in the next 5 days, we'll have to start counting all over again (which we hear is very common), but she has done great today so far. One day down, four more to go... The end is in sight! Praise God!

Emily is now 5 lbs. 5 oz! She passed her second (and final) eye exam yesterday (which is a huge sigh of relief because eyes are a big concern for preemies) and passed her hearing screen last week. Eyes and ears are fine. She's looking so good and doing so well, it's hard not to want her home now.

Thanks to all of you who have prayed for us, sent cards, brought meals, and more... I'm losing count of all the kind things people are doing for us. I could be writing thank yous for a week! From the bottom of my heart, Luke's heart, and my children's hearts (although they don't realize), thank you!

We're on the home stretch. Pray that Emily will continue do well so that she's able to come home soon. :)

Three Mouseketeers

Meet the three newest mouseketeers!

Mickey Mouse:

Minnie Mouse:

And Baby Mouseketeer:

Emily is now 5 lbs!!! What a big girl, considering she's almost twice her birth weight! She continues to grow and do very well. I have been able to breastfeed her twice now, and she is doing a great job, although it still takes a lot of patience and learning from both of us. She had another de-sat last night, but that was it for the day. Hopefully over the next week or two we'll see her de-sats stop completely.

Logan and Audrey had fun dressing up in their costumes and trick-or-treating around the square in Valparaiso with their cousins, Meredith and Kaitlyn, on Friday night. Audrey loved being in her costume and didn't want me to take it off at the end of the night. What can I say, she is her mother's daughter! :)

A clean face

Emily now has a clean face... no oxygen and no feeding tube. She has been taking all of her bottles by mouth, so they were able to pull out the feeding tube last Thursday and she's been doing great ever since. Now she's taking 45 ccs (1.5 oz) of breastmilk every 3 hours and she weighs 4 lbs. 12 oz! At this rate, she'll be 5 lbs. by this weekend!

All squeaky clean after her bath

On Sunday Emily was having a lot of de-sats (several in a row), so her doctor decided to put her back on oxygen again. She told us that it wasn't necessarily a "setback" but instead a reminder that Emily is only 34 weeks gestation and is still really young. But today her doctor decided to try removing the extra oxygen once again, and Emily hasn't had any de-sats all day. Maybe this time it will stay off for good... Time will tell.

Studying her mommy

My friend Jenn came to meet Emily

Hopefully just a few more weeks before Emily can come home. We're getting the house ready. We just had new carpet installed today, and we've moved Audrey into a toddler bed so the crib is ready (although we'll keep Emily in our room for the first several months). With such a difficult pregnancy (18 weeks of bleeding and bedrest) and the loss of Brianna in the not so distant past, it was hard to know how to prepare for Emily. In many ways, I didn't allow myself to believe that Emily would be a baby we could take home. Even while she was in the NICU, I didn't really envision her here at home with us. I guess I wanted to be prepared for the worst. A few weeks ago I was brave enough to purchase a large letter "E" to put above Emily's crib, but I haven't been brave enough to hang it... yet.

Now that it's looking more likely that she will be coming home at some point, I'm kind of in shock that we actually have a baby! A baby! Our baby!! I know I've been visiting her several times a week for the past 7 weeks, but it hasn't really sunk in until now. The nesting instincts are kicking in, and I'm starting to get excited. Time to wash the baby (preemie?) clothes, move Logan to the 3rd row of the car, set up a place for Emily to sleep in our room... Hard to believe she could be home in a couple weeks!

We do not ever take for granted how far we have come. 28-weekers do not have any guarantees. I had a friend online during my pregnancy with Emily who also had a subchorionic hematoma and also delivered her baby at exactly 28 weeks. She and I had very similar pregnancies. However, this friend's baby girl died at 12 days old from intestinal failure. It's so hard to know why God would choose for some babies to die and some to live, but having been on both ends of the spectrum, we know that God is good. He has a plan through both life and death, and through it all he remains the same: good.

Thank you, God, for Emily's health and progress. We don't take it for granted, and we know you have a plan for Emily's life. Help us to trust your good and perfect will and to lead Emily in a life of service for you. Amen.

p.s. Ending with a quick little video:

Movin' on up!

Emily moved up to the transitional care unit today! This is where she will start making the transition from hospital to home! It means that she's doing really well and doesn't need the intensive care that the NICU offers. Whoo-hoo!

Now Emily has her own room and it's a completely different environment than the NICU. It's much more calm and quiet, not as many alarms going off. I think we're going to like it!

The two main things that Emily needs to work on before she can come home are taking her feedings by mouth instead of the feeding tube (she did great today -- drank 5 whole bottles!) and not having any more de-sats (she had 3 de-sats today... boo!). Both of these things just take time. I think we have another 2-3 weeks at least before she'll come home. They still estimate that she'll come home around her due date (Dec. 1) but the nurse today thought maybe by Thanksgiving. Wouldn't that be something to be thankful for?! Keep praying for good days! Thanks.

Notice anything different?

No more oxygen!!

(And she's doing great!)

Fast Facts and Lots of Pictures

We are all feeling much better here in the Darling household. Thanks for your prayers. Thanks also for the cards, phone calls, meals, and gifts we've received lately. We are so blessed to have such good friends!

I was finally able to see my baby today after a week of staying away! I couldn't wait!! I got to hold her, to change her diaper, and to feed her a bottle! Emily looks so good and healthy... and so much bigger to me! She even has a double chin!! She is adorable! She seemed to recognize my voice and was very alert while I was there. I think she missed her mama too!

Thought I'd give you all some fast facts about Emily tonight and leave you with lots of pictures of our munchkin. :)

• Emily is 40 days old. (5.5 weeks)
• She is 4 lbs. 6 oz!
• She drinks 35 ccs of breastmilk every 3 hours. She practices drinking a bottle when she is awake and alert at her feeding time. Otherwise she is fed through a feeding tube that brings the millk directly to her tummy.
• She is on .3 liters of oxygen at 21% (same as room air).
• Today she had 0 de-sats that required intervention!
• In order to come home, Emily still needs to gain more weight, be weaned off her oxygen, drink all her milk from a bottle, and remain healthy. It looks like she's moving in the right direction!

p.s. These pink "hands" in this last picture are so cool! They are weighted pillows that mimic the look, feel, weight, scent, and warmth of a parent's hands to help the baby feel more comfortable. Emily loves them! Thanks to the friends who sent them. :)

Still here

Sorry for the lack of updates this past week. It has been a week of adjustments. This is the first week that we haven't had one of our moms here to help. It has been great to have them so willing to lend a hand for the past month, but it's time that we start to operate as a family of four again (before we add Emily as number five!). Logan and Audrey need that normalcy again. Over the past few weeks, Logan had been crying at random times and was concerned every time I'd leave, and Audrey was waking during the night screaming and saying "I want my Mommy!" They may be young, but they know something's up. This week has been good for the four of us to get back into "normal" again.

However, things are anything but normal around here.

I have been pumping every 3 hours around the clock to provide breastmilk for Emily. I know how important it is for her, but I'm about ready to throw that pump out the window! A machine just isn't anything like a baby. This past week I ran into some problems that made me sore, cranky, and irritable. I'll spare the details, but thankfully things are much better after meeting with my lactation consultant.

Besides that, we have all been tired, achy, and sniffly, so we've stayed away from the hospital all week.

Then tonight both Logan and Audrey got the stomach flu. Ugh!

We are all exhausted and under the weather. I feel like hibernation is in order.

Emily, on the other hand, is doing FABULOUS! Here I go on and on about our aches and sniffles, while our superstar Emily continues to thrive. Can I brag a little?

• Emily is now 4 lbs. 3 oz!!


• They have started giving her a bottle by mouth and she is drinking like a champ, taking whole bottles (30ccs) at a time! I thought they'd have to start with drops in the mouth or something while she learned to swallow, but she acts like she's been doing this forever! I can't wait 'till we're healthy enough to visit so I can try nursing her or giving her a bottle myself!


• She is now in an open-air crib since she can maintain her temperature on her own. Can't wait to see her without a lid!


• She has a couple de-sats every day, but she's pulling herself out of most of them without intervention.


• She is still on oxygen but it is at only 21%, the same as room air. The nurses think she still needs a little reminder to breathe during her deep sleep cycles (when she has her de-sats), but they might try to take the oxygen off next week.

I can't wait to visit Emily again and feel guilty for not being there this week. We'd just hate to give her any nasty germs. Pray that we will all regain our health and strength (and that Luke and I will escape the flu!) so that we can visit and encourage Emily. And praise God that she's still doing great, even without us there.

More updates with pictures to come soon, I promise!

Preemies and Pumpkins

Here's our little pumpkin! Emily is still doing great and is now 1 month old. Her leg is completely healed (we can't even see where the infection was) and she is growing by leaps and bounds. You might recall that we were excited about her weight on Tuesday at 3 lbs. 4 oz. Well.... this little girl has been packing it on these past 4 days... she is now 3 lbs. 12.4 oz!! That's an average weight gain of over 2 oz. per day! She's nearly 4 lbs. already! Go, Emily, go!!

I spent the day on Thursday snuggling with Emily since Luke's mom was here to watch Logan and Audrey. We kangarooed together for 2 hours, and it was wonderful. I just wish it wasn't such an ordeal to hold my baby... all her tubes and wires must be unhooked, stretched, and reattached, and I have to scoot my chair as close as possible to the incubator so that everything will reach. It takes a good 15-20 minutes just to get everything situated. Finally the nurse leaves and draws the curtain so we have a little bit of privacy. I rock back and forth and sing to my baby girl as I stroke her long, soft little fingers, trying to ignore all the voices, footsteps, beeping and alarms that fill the NICU. Emily and I breathe in sync and even doze off together, and we both look forward to the day when we can cuddle in the comforts of our own home.

Since the weather was so nice today, Luke and I decided to take Logan and Audrey to our local pumpkin patch. Their favorite attractions were the baby chicks and running through the corn maze. We also picked a pumpkin for our front porch and let both of the kids go on a pony ride. Oh yes, and kettle corn was enjoyed by all!

A Good Report

Good news to report: Emily's leg is looking much better today! The doctors have had her on 3 different antibiotics since Saturday, trying to find the right one to treat the infection, but it looks like they have found one that works. I was delighted to see how much better her leg looks today. We're also thankful that they caught this infection before it spread anywhere else.

Emily's vitals have been very stable and her de-sats today haven't been as low -- only into the 80s instead of the 50s-60s. Emily also had her first eye exam this morning and everything looked good. When we spoke to her doctor this afternoon, he said she is doing very well.

Emily looked chubbier to me today (as "chubby" as a 3 lb. baby can look!). The more I visit her, the more normal her size looks to me. I saw a newborn last week at church who looked absolutely huge! I guess everything is relative. They have increased Emily's feedings to 28ccs (almost 1 oz.) every 3 hours and she now weighs 3 lbs. 4 oz. Keep growing, baby girl.

A few of you have asked how I am doing with all this. Mostly, I'm doing well. I am very thankful for the good days, but I am equally as aware that anything could change quickly. I want to be hopeful but prepared. It's a tricky balance. I do feel more peace about all of this than I thought I would, though. I think life's circumstances have been teaching me to let go and trust that God has this all in His hands. (I wouldn't even know how to control all of this if I wanted to... this is a little out of my realm!)

That said, these past few days I have been worried about the infection in Emily's leg. I found myself, for the first time with Emily, concerned about her future and where this infection would lead. I didn't know exactly what to pray for or how to ask God to heal Emily's leg, but the chorus that kept coming to mind was this:

Hear our prayer, O Lord.
Hear our prayer, O Lord.
Incline thine ear to us.
And grant us thy peace.

Thankfully, Emily's leg appears to be fine, and we are grateful for God's healing act on her behalf. Thank you for your continued prayers for Emily and for our family. You lift us up and verbalize our requests when we aren't even sure what to pray for ourselves. Your prayers are sustaining all of us and providing us with peace. Thank you from the bottom of our hearts. And join us in praising God for another good report!

Ronald McDonald House

The four of us (Luke, me, Logan and Audrey) spent the night last night at the Ronald McDonald house near Emily's hospital. It was a beautiful mansion with comfortable beds, a playroom for the kids, a big kitchen, and close proximity to Emily! I went to the hospital on Friday night and held Emily for 2.5 hours while Luke stayed back at the Ronald McDonald House and went to bed with Logan and Audrey at 8:00.

Emily is still doing well. She continues to have 5-6 de-sats each day that require the nurse to intervene, but she continues to put on weight and now weighs 3 lbs 2.6 oz. One new area of concern is that Emily has a skin infection on her leg. Please pray that the antibiotics she is taking will work and will control the infection.

As an added bonus, my grandparents (Emily's great-grandparents) got to meet Emily this morning. They were traveling on their way back to South Dakota and popped in for a quick visit. Emily even opened her eyes to take a quick peek at my grandma before settling herself back to sleep.

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.