Feeding Tube, Echocardiogram & Home Soon

The doctor just called.

He thinks Elise will be able to go home within the week (i.e. 3-7 days). AND he's having the nurses take out her feeding tube!!! As anyone who has had a premature baby in the NICU knows, this is a BIG sign that she's going home soon. I can hardly believe it. The plan will be for them to put the tube back in 2-3 times per day as needed if she isn't able to finish her bottle.

He confirmed that the test she had to confirm she does in fact simply have a PDA and not another heart problem was an echocardiogram (ultrasound of the heart). She'll follow up with a cardiologist until it closes and will have another echocardiogram about 2-3 weeks post-discharge. In less that 5% of babies, it doesn't close on its own. If this is Elise, she would need either surgery or a coil to close it.

He also started talking more about "when she goes home" stuff. Every 1-2 weeks she'll need to check in with her pediatrician for weight, length and head circumference to ensure she is continuing to grow. Right now she is close to the 50th percentile for weight, her head has "fallen off" the charts (partly due to CPAP) and her length is just below the 50th percentile. He told me to look at her growth chart with the nurses while we're there today. That'll be interesting.

Sheesh, isn't it ironic how the Lord works? You verbally process that you need His help to keep strong, and then He gives you exactly what you need to do so.

Thank you for your continued prayers. He's listening.

Consider It Pure Joy...

Do you ever pray those prayers that the Lord would teach you to trust Him? That you might find joy in trials and become second with Him as number one in your life? That you might learn to persevere and gain wisdom? That you might be single-minded in your wholehearted devotion to and following of Him?

And then, when He brings the very things you need to have your prayers answered, you want out. Pronto. You want it all said and done. Thanks, God, but I was really kidding and wanted you to teach me in my way not in yours. Oh, and when I said single-minded, I really meant double-minded but in a way that looked single.

I was doing quite well as we processed things like selling our home that we had planned to live in for the rest of our lives, simply adding on as more space was needed. I was willing to give that up. And then the Lord gave it back to me.

I had absolutely no doubt or fear when the doctor and midwife said, "You're having your baby tonight," despite the face that I wasn't quite 28 weeks yet. And then the Lord saved my life and my daughter's with mere minutes or hours involved in the time from when she was born and we were both fine and when we both could have died.

I knew my daughter was in His hands as she struggled to develop and couldn't breath without the assistance of machines. And the Lord helped her little body to develop to the point of skipping one step in the normal process for beginning breathing on her own and brought her to the place of never going back to the machines.

And now, as this time seems to drag on. As we get results back on testing that her heart murmur is just a standard, small PDA, completely normal for premature babies that will merely require follow up with a cardiologist until it closes. As she holds her own temperature and continues to breath on her own. As all she has to do before going home is get to the stage in her development where she can get all of her feeding from a bottle. I want out. I'm done.

Ever have times like these? I don't want to sound totally hopeless. Don't worry, I'm not. I praise the Lord for His blessings in my life. Especially for the wonderful and supporting husband He has given me who is going through all this while working full time and going to school. And especially for that beautiful little baby girl in the NICU who, despite often seeming like she really belongs to the hospital staff who just let me visit her occasionally, really is my daughter.

Sometimes it's just hard. And I'm weary. I want to be able to hold my baby girl all the time. I want to be able to change all her diapers. I want to be able to do all her feedings. In essence, I want her to be all mine. But then I remember, she's isn't all mine. She's God's precious gift to me. And He has plans for her that are greater than I could ever imagine. Just as He is working in my life to change me into the one I was made to be, He has plans to do the same with my daughter. And those plans involve a NICU and patience on the part of her parents as they await the words, "Bring in the car seat because she's coming home soon."

I want to stand strong, to persevere in this trial, and to bring glory to God in doing so. I honestly couldn't do this without Him - not because He's my crutch or something I've created to help me cope, but because He is the Creator of the universe, He is my Savior and He is God.

Please pray for us as we continue to endure. Pray that we finish strong and that all glory go to God for both our daughter's healing and our ability to make it through stronger for the trial.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." James 1:2-4

Five Pounds!!!

Elise hit 5 pounds tonight!!! Well, 5 pounds, 0.8 ounces to be exact. It's hard to believe that 7 weeks ago she was actually under her birth weight of 2 pounds, 11 ounces and that she's now put on well over 2 pounds. Once she hits 5 pounds, 6 ounces, she will have doubled in weight. Doubled! She's close.

I neglected to mention earlier today that last night she took her first full bottle from me. She's taken many a full bottle from the nurses and a couple for Kit, but last night was the first full bottle for me. And tonight she took another full bottle from me! It's hard to explain, but being able to feed your baby all of her food yourself feels very satisfying when you haven't been able to do so since she was born. Please pray that she continues her progress on bottle feeding.

In other exciting news, Ellie's buddy Anthony had his first real meal today - formula from a bottle! Now that he's off the ventilator, he seems to be enjoying life much more. Pray that his lungs continue on the path to functioning properly.

Well, I'm off to bed.

Massage Info

For anyone interested in the infant massage program, the website for the program our hospital uses is lovingtouch.com. They have instructors all over the U.S. The instructor for our group class mentioned that her training was from a different program (with the same strokes but different names for the strokes) so if this program isn't available in your area, I'd definitely recommend looking into whether there is a similar program near you. Here's the full listing of benefits for babies from the Loving Touch website (and this doesn't include the listing they have of benefits for parents):

• Provides a special time of communication that fosters love, compassion, and respect.
• Improves general well-being.
• Provides an intimate time for children to confide in parents.
• Improves overall functioning of the gastrointestinal tract.
• Promotes relaxation and helps babies self-regulate calm, which reduces crying.
• Helps to normalize muscle tone.
• Improves circulation.
• Enhances immune system function.
• Improves midline orientation.
• Helps to improve sensory and body awareness.
• Enhances neurological development.
• Helps baby/child to sleep deeper and more soundly.
• Helps to increase oxygen and nutrient flow to cells. Improves respiration.
• Helps to improve pain managament; can relieve discomfort from teething.
• Helps with congestion, gas, and colic.
• Enhances release of hormones in the body. The growth hormone can be stimulated which helps weight gain.
• Reduces levels of cortisol, the stress hormone.
• Provides all of the essential indicators of intimate parent-infant bonding and attachment: eye-to-eye, touch, voice, smell, movement, and thermal regulation.
• Stimulates all of the physiological systems. Massage sparks the neurons in their brains to grow and branch out to encompass other neurons.

Massage & Happy (Belated) Seven Week Birthday, Elise

On Saturday afternoon we had our one-on-one appointment with a nurse certified to teach infant massage. It is definitely on my short list of favorite moments with Elise since she was born. We sat in chairs with a pillow on our laps. Kit and the nurse had dolls, and I had Elise. One of the big parts of infant massage is making sure the baby is enjoying it and stopping and containing (gently wrapping/pressing both hands around the part of the body you are massaging) if they start to give cues that they don't like what you are doing. You contain until they relax, try again and then contain again before moving on to the next thing if they still don't like that stroke.

At the hospital they have you use Aquaphor to help your hands glide easily over baby's skin because it's the only substance proven to not allow bacteria growth, but we're going to buy some grape seed oil (per the instructors' recommendations) for home use.

She was completely relaxed and loving the massage for most of the time. We loved seeing how the leg, feet and tummy massages relaxed her so that she pooped a bunch during them. Good tricks for helping with gas and constipation.

My favorite part of the massage was gently rolling her ankles and wrists in my hands. She was so relaxed and let me have control to help her relax even more.

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Overall, Elise is still doing well medically. Her only major obstacle at this point is still learning how to take all of her feedings from a bottle. Although she eats some full feedings, sometimes she gets too sleepy to finish. As she gets older and has more practice, she'll get the hang of it. We're very excited to get her home soon!

Normally babies born at her gestational age come home around 36-37 weeks based on what would have been their gestational age. Elise turned 35 weeks yesterday so we most likely have 1-2 weeks left. That said, they can't ever know for sure exactly how old she is so she could actually be a week older or younger. Either way, it's completely up to how much time she needs to learn bottle feeding.

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I also neglected to wish Elise a happy birthday when I posted on her 7-week birthday Saturday. Oops! As she nears the two-month mark, she's also starting to grow out of her preemie clothes! Can't believe she's already growing out of clothes that she would have floated out of when she was first born. She's almost five pounds!

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Now on to the fun part...photos and videos!

She's too darn cute!


Showing off her cute outfit with ruffles down the front and little bears on the feet.


Looking precious all wrapped up in peach and pink.


Sleeping soundly.


Enjoying her pacifier.


Showing off another cute outfit. This time showing how cute she looks in lavender.


The cute purple ladybugs on the feet of her outfit.


When we came in the other afternoon, we found her asleep with her pacifier pressed into her nose.


Then she moved her arm a bit.


She was getting tired and done with her massage when we went to do her back so we just practiced containment on her back.


She enjoyed simply being contained.


Cute ruffly bum.


A little one-eyed pose for the camera.


Enjoying mommy/daughter time.

From April 24, 2009

Here she is sucking on her pacifier. She's getting really good. If you listen closely, you can hear her making squeaky sounds as she sucks.

From April 26, 2009

You can see all sorts of facial expressions in this video.

Two Pounds & Lots of Bottles

Last night was a good night - Ellie's officially gained just over 2 pounds since birth! She's up to 4 pounds, 12 ounces. She's come a long way from the tiny little girl she once was. She seems "huge" to us now, but then we see full term babies and realize she's still so small.

Yesterday I believe she took a bottle at all (definitely most) of her feedings as well. She doesn't always finish the whole bottle quite yet, but she's getting more proficient. What she doesn't finish by bottle they currently give to her via her feeding tube. The goal is to get her to take everything by bottle. I can tell each time we give her the bottle that she's getting the hang of it more and more.

Praise the Lord for His provision for our baby girl. Please continue to pray for strength for us in these last couple of weeks before we bring her home.

Also, my friend Martha emailed me that her friend Jamie's baby, Veda, has been transferred to the same hospital we are at. I'm hoping to catch up with her at some point (though she's most likely back in the West NICU where we started). Please be praying for them as they are at the beginning stages of the journey we are coming to the end of.

Great News!

Ellie's buddy Anthony is off the ventilator today and is actually on the nasal cannula rather than CPAP since he didn't much care for CPAP!!!

Nursery, Massage, Ears, Eyes & Weight

So I have to start by saying that Elise's room is turning out to be absolutely adorable! I'm definitely biased, but all the projects I'm working on are turning out even better than I expected. I haven't quite gotten to the projector project (Scott, I'll call you tomorrow about scheduling a time for me to borrow your projector), but today I was able to get most of the other projects done. A little known fact about me is that I love being crafty. I don't usually embrace this part of myself because I'm not much of a hobby-ist and don't take the time to do very many things just for "fun" - my personality is too practical. Anyway, I'm getting to enjoy my artsy side and am loving it! (A good way to take my mind off of all the difficulties of having a baby in the NICU.) I'll post pictures once it's "done."

Last night we went to a NICU infant massage class. Our friends Paul and Susan went too (their son Anthony is the little boy on the ventilator whom I've asked you to pray for). Also in the class was the couple whose little girl is next to Ellie right now. We practiced on dolls in the class and will have an individual session with a trainer soon so that we can begin giving Ellie "formal" massages. It was wonderful to learn about something that can help her so much and that only we can do for her. The teacher told us about how studies have shown that babies get out of the NICU faster and experience many developmental benefits when massaged daily. So we're going to try to work in as much massage as we can. And then when she comes home we'll know all the good massage tricks to help her - including ones to help with gas and constipation. :)

After the class, we had dinner with Paul and Susan, which was great. It's so nice to have friends who are experiencing many of the same things we are. Please pray for them as Anthony has a long road ahead. As of yesterday, the doctors were planning to try him on CPAP on Friday; please pray that this happens or for peace for Paul and Susan if it doesn't happen quite yet. Anthony's been in the NICU since a couple of weeks before Elise was born and will be there when she leaves as well. Pray for continued strength for Paul and Susanas well; they've been rocks for us to lean on, and we can't wait until we hear the news that Anthony's breathing on his own and getting ready to go home. (Ellie's excited too as she and Anthony already have play dates planned.)

Yesterday Ellie had both her ears and eyes checked. Her ears checked out just fine. Her eyes still showed premature retinas, which is completely normal at her age (not sure if I posted about that before, but they showed the same thing at her appointment a couple of weeks ago). She has another eye appointment in two weeks, which will be done as an outpatient if she's discharged before then. Can you believe she might be discharged before then? She might not, but it's crazy to hear the doctor starting to talk in those terms.

As of tonight, Ellie might actually hit the 2 pounds gained since birth mark! Last night she was 4 pounds, 9.8 ounces. Praise the Lord for all the progress she has made.

Still Going Strong

Elise is still doing quite well and continuing to progress. She's taking bottles more frequently (about every other feeding), though she still gets tired and often can't finish. Last night I gave her another bath and she managed to finished 27 out of her 37 cc in the bottle (or maybe two more since I believe this nurse adds 2 cc since those are always hard to give at the end when the bottle is practically empty).

Yesterday morning I ran errands to Home Depot to look at rugs and pick up some spray paint for a project, home to drop off the paint so it didn't explode in my trunk due to the high-ish temperature here yesterday, Babies'R'Us to try to find a car seat we liked in stock, and Target to make sure the Babies'R'Us one was really the best one that our local stores carry.

The Babies'R'Us I went to (the new one in Jantzen for anyone who's interested - it's a nice one) didn't have the car seat I wanted at that location so last night I went to another one to pick it up. And I had a 15% off coupon, always nice to get a deal.

This may sound odd to everyone, as I know Kit wasn't quite sure why this meant so much to me, but buying Elise's car seat and knowing I had it in the trunk when I went to visit her last night felt extremely comforting. Now that we have the car seat, I feel much more like we really have a baby and she's really going to come home at some point in the near future. Not sure if that makes sense, but I guess the car seat was a pivotal item for me in preparing for baby. Thanks mom and dad for the wonderful present!

Here's she is in her open (non-heated) bed last Friday.

Another shot of her in the bed. It kind of looks like a Rubbermaid on a cart to me, but I'm sure it costs a lot more than a Rubbermaid.

Sleeping soundly.

Precious.

The infamous Tower. As you can see, we now have lots of space and windows.

Sporting a cute outfit from my mom.

I couldn't resist buying a little three pack of headbands with bows at Target a few days ago.

The headbands are clearly two times too big, but still cute for a quick photo. Keep in mind that Ellie's head has nearly (or maybe fully) doubled since she was born.

Wide awake and showing off her cute tummy.

Getting weighed.

Another cute outfit (this time from Kit's mom). Not sure she's too thrilled with me for taking this picture.

She had just wriggled out of her hat and seemed pretty pleased with herself.

Two seconds later she was pouting and crying. Gotta love how quickly babies emotions change.

Not sure if you can really tell in this picture, but this is one of the onesies that was rather large on her a couple of weeks ago. It now first quite snug around her tummy.

Another cute crying photo.

From April 19, 2009

Ellie looking around. Ignore me talking like a goof throughout the video.
Click on the picture above or the link below the picture to watch the video.

From April 21, 2009

Ellie talking and crying. I don't think I'm a bad mom for videotaping this...they say you should capture your baby's cry to see how it changes when they get older. (I promise, the nurses have told me this is a good idea. :))
Click on the picture above or the link below the picture to watch the video.

Overhead Projector

UPDATE: Thanks for the ideas! Our worship pastor has an LCD one I can hook up to my computer. Woohoo!

Original Post:

Does anyone who lives in Portland know of someone with an overhead projector I could borrow for a couple of hours? There's a special something I'd like to do in Elise's room but need a projector to do so. An old school kind would work as would the newer kind you can attach to a computer. Any connections?

The Tower & Nursery (aka Happy Six Week Birthday, Elise)

She made it!!! She's officially in The Tower as of a little before 2pm today - a great gift on her six-week birthday. Kit stayed home this afternoon to work on the nursery and called me while I was driving to the hospital to tell me the doctor had just called to say they were moving her. I definitely got teary for the rest of the drive. We are so very excited at her amazing progress. I'll post photos of her area in The Tower soon. Tonight she took another full bottle, and she's been taking partial bottles at other feedings so we're definitely getting close to take home time.

The nursery is turning out beautifully, and I will post photos once it gets closer to being done. Since mention of the nursery also brings up the topic of our house, I'd like to share some good news. The Lord has provided the means for us to keep the house. We are very blessed and thankful for His provision. Now our little girl has a home (and a cute pink room) to come home to that she won't have to move out of any time soon.

Prayer

Jamie, a friend of my friend Martha, gave birth to her daughter 11 weeks early last night. Veda James was only 2 pounds, 12 ounces. Please pray for both mom and baby.

Another Move, Two Full Bottles, A New Bed & Another Pound

Per the doctor yesterday, we're looking at 2-3 weeks more in the NICU. I can hardly believe that we're already through most of Elise's time there nor can I believe how much progress she's made.

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As of Wednesday, Elise is now in her 6th location since coming to the NICU. I'm not sure that I remembered to post about the last three moves, but she's been...

1) In her original location in the Level 2 area (despite really being Level 3 at first, she was put there due to remodeling being done in Level 3),
2) In her private suite in Level 2,
3) In the Level 3 area (despite being Level 2 at that point because they needed her private suite for another baby),
4) Back in her private suite,
5) Across the room from her original location in Level 2,
6) In the corner just down the wall from her private suite in Level 2,
7) In a Labor & Delivery room designated as NICU since the NICU is so full. (This is really #6 since #4 was a repeat of an old location.)

Soon she should be moved to The Tower, which though still technically Level 2 (there isn't a Level 1) is a step forward from the Level 2 she has been in.

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On Wednesday night, Kit fed Elise another bottle, and she drank the whole thing! That same night she took another full bottle from her nurse, Virginia. Last night she didn't tolerate the two bottle feedings as well (stopped breathing and had to be "stimulated" - have her back patted and rubbed firmly - to start breathing again). It's going to be a process and take some time for her to get the "suck, swallow and breath" thing down.

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Last night after we left, Elise's nurse, Virginia, moved her from her incubator to an open bed with no added heat. I called this morning, and Virginia said Elise has actually been warmer in the open bed than she was in the incubator. Pray our little girl keeps herself warm. This is one of the requirements of being able to take her home.

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As of last night, Elise is 4 pounds, 1.8 ounces. You read right - she's hit FOUR POUNDS!!! She seems huge to us both these days, though she's still so small. Wednesday night she was 3 pounds, 15.8 ounces and we joked that she was just teasing us by getting so close to that four pound mark. But then I figured out what she was really doing - she wanted to give Grandpa that fourth pound as a birthday present. There's only so much you can give to others when you're a baby, and an extra pound is quite the gift.

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We just got the good news last night that one of the couples from our NICU parents' meeting should be taking their little boy home on Saturday! And a couple of days ago I saw another couple we met at the parents' meeting leaving with their little girl! We are so excited to see the progress their babies are making and are looking forward to the day Elise can come home.

Please continue to pray for us and also for our friends whose little boy is on a ventilator. He's been in the NICU since two weeks before Elise was born and has wonderful parents who would just love to be able to bring him home soon. Also, from what I last heard, the gal from my work's baby girl is doing well and is estimated to be in the NICU for 4 weeks.

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Her little legs and toes are starting to get chubby.

We love it!!

Isn't her side profile adorable? She's grinning here and apparently attempting a sit up.

Out cold on daddy's shoulder after a good post-bottle burp.

Daddy pretending to sleep too.

So peaceful.

Her first bunny ears.

In preparation for switching her to the open bed, the heat was down in her incubator and they've started layering her clothes. Here she's wearing one of her cute outfits with a matching pink onesie underneath.

We have not forgotten about our pug, the original blogger in the family who has graciously given up his blogging rights for the time being. He's been sleeping in bed with me in the mornings after Kit leaves. Then he stays in bed for about an hour after I wake up (as pictured here).

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These words are more comfort today...

"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you." 1 Peter 5:10