Baby Doll

In the past couple of weeks we have watched our little girl transform from a preemie into a perfect little baby doll. It is the coolest thing to see the little nuances in her changing body each day. Some days we are able to identify what has appeared to change overnight like her eyes are a bit bigger and her mouth is a bit wider. Other days we just can’t quite put our fingers on it, but somehow she changed. She is filling out beautifully and we relish in the new found chunk on her upper arms, neck and upper thighs. Plus, just like a baby doll, the nurses have taken to dressing her up in silly hats, dresses and our most favorite Hawkeye visor. What is it about having a girl that invokes this crazy desire for dress up, slumber parties and chat time? The nurses have also taken to spoiling her by giving her lots and lots of snuggle time with Mommy and Daddy and as well as the night nurses. We feel so tremendously blessed by her nurse’s willingness to just love on our daughter when we are not able to be here with her. Emersyn is so very loved by everyone she comes in contact with and for that we are so grateful!
The other good news is that her next (and hopefully last) surgery has been scheduled for Monday, October 18th at 9:00am for her re-anastomoses of her tummy. If all goes well and she recovers nicely, we might be able to start talking about discharge in the next few weeks. Of course, it is with cautious anticipation that we look forward to getting our baby girl home. Sometimes, it is hard for us to look back and really believe that it has been almost 12 weeks since our life turned sideways for a while. On one hand, the time has gone so quickly and it feels a bit like you’ve stepped into a time warp, but on the other, we can see the passage of time now in the changing of seasons. We arrived in the heat of summer and will depart in the coolness of fall (we hope). Life has stood still for us for the past few months, but has moved forward all around us. We feel confident that we’ll emerge from this “season” with a new appreciation for family, for time spent together doing nothing, and for those little moments that can so easily slip by unnoticed. I kind of like this new pace of life – holding my children on a regular basis, spending quality time with a husband and father that continues to amaze and inspire me and relishing in a love that surpasses circumstance, distance and convenience. We are so BLESSED!

Post Broviac

Last Wednesday (22 Sep), after much debate and a week’s worth of trial and error, the doctors suggested we move ahead with the placement of a central line catheter as the last move to help Emmie grow. Her weight gain had plateaued at 3lbs. 2oz for about three weeks and no matter what they tried, they couldn’t seem to get her to absorb what she needed in order to keep her on her growth curve. So, the surgeon over at Children’s Hospital inserted a Broviac Catheter into little Emmie’s chest and we have seen AMAZING improvement in the last few days. She was only on oxygen support during the procedure itself and was put back on room air as soon as she was back in her pod. She is already 4lbs. 10oz and is starting to look more like a baby doll and less like a preemie. We are so encouraged each day to see her put on weight and are optimistic that the Broviac will work beautifully to get her to the weight that she ultimately needs to get to in order for the pediatric surgeon to come back over and put her tummy back together to take advantage of full motility of her tummy and finally remove the Broviac. We are looking forward with great anticipation to the day they can put her plumbing back together as that should be the final milestone needed to start discussing her “graduation” from the NICU. If she keeps up the weight like she has been, we will get there sooner than planned. Our little girl is an amazing miracle to watch. It is incredibly humbling to watch the Lord work through the medical staff here at the hospital each day in how they care for little Emmie. There are so many people concerned about and praying over this girl and we see those prayers answered in the eyes of the staff here and in the strength we feel each day.

On a side note, we would like to enlist the help of all of our prayer warriors out there to pray for our friend Lynne and her young family. She delivered her first son a few weeks ago 9 weeks early and has been incredibly strong here in the NICU. She and her husband have been stationed down at Fort Carson down in the Springs and he is currently deployed in Afghanistan. She just informed us that her husband was injured during his deployment a few days ago and lost both his right arm and leg. We can’t even imagine the amount of stress this girl has gone through to date and it appears to be taking its toll on this young woman who has shown incredible strength and maturity so far. She is going to need strength far beyond her own to weather this and we all know that He can comfort us in ways beyond our understanding. We ask that if you think of it, to please keep her in your prayers.

Learning to Breathe

The last two weeks for our family has been spent learning how to breathe deeply again. It is a funny thing to realize how quickly we resort to shallow breathing to survive the chaos of life turning sideways. When you notice that you’ve not taken a deep breath in weeks, your first instinct is to take a big deep breath. At about the time of our last update, we were just taking that first deep breath as things were going so much better for little Emmie. Over the past couple of weeks, she has continued to improve for the most part. Each day we hold our breath a bit as we wait for the report on how she did the night prior and then relax when we receive a good report. Each morning the anxiety of walking around the corner into the NICU gets just a little bit better and we get more comfortable with the idea that Emmie is going to not only survive this adventure, she is going to thrive!!

She is now completely on room air and has gone 6 days without any oxygen support. This is simply a miracle in our eyes as we’ve heard countless times how no one here has ever seen a “26 weeker” go off oxygen this early. Praise God this girl has amazing lungs!!! (Interesting timing as our “lungs” continue to improve as well ). So far the main concern for little Emmie right now is her growth. She has sort of plateaued in her growth in the past couple of weeks and it has been a struggle for the medical team here to get her enough calories as well as enough nutrition that she can absorb in her temporarily shortened intestinal tract. They call it Short Gut Syndrome and their primary focus has been on trying to slow the motility of her gut down in hopes that the nutrients in her food will have a better shot at getting absorbed before they are dump out of her stoma. It seems like a catch 22 for us as the surgeons need her to grow before they can put her “plumbing” back together at which point she’ll have the benefit of having her entire intestinal tract to absorb all the goodies she needs, yet she can’t get to the weight they need her to because she doesn’t have the full utility of her tummy. So . . . all that to say, her growth has been VERY SLOW. The doctors and surgeons are holding out hope that they won’t have to take a more aggressive approach to getting what she needs in her system. The last resort would be to put in a central line (BROVIAC) that would give her the chemical recipe she needs directly into her bloodstream, thereby bypassing her gut altogether. Obviously, our preference would be to avoid putting anymore holes into our perfect little girl, but if all else fails this will need to be done. Currently, the surgeons at Children’s Hospital remain on standby; more to follow Monday, 20 Sep.

We remain steadfast in our confidence that the Lord has big plans for little Emmie and for our family. His fingerprints are all over her perfectly formed tiny little body and if more scars are what He has in mind for her, then we need to trust that it will be for a greater purpose to bring Him glory. Patience is the theme of the week for us and we are slowly learning to wait and be still as we get the privilege of watching the Lord work miracles in our little girl. We cling daily to His providence and faithfulness after all, trusting in Him is the reason we can breathe a little deeper each day.

Oh Happy Days!!!

Finally, we’ve had a series of wonderful days with our little lady. For the past couple of weeks, Emersyn has continued to make great strides much to the pleasure of her parents, doctors and nurses. She has graduated down to the lowest form of air support (low-flow nasal cannula) and is basically on room air with just a whiff of oxygen and is tolerating it beautifully. Additionally, they started her on feeds about two weeks ago through a tube that runs through her nose into her tummy. She has taken to mommy’s milk very well and they’ve been able to increase her feeds up to a full feed (9 ml) every 4 hours. This was a big milestone as her tummy continues to heal. Our hope is that she would be able to transition from a continuous the feeding method to what the nurses call bolus feeds where they increase the volume but decrease the amount of time they administer it. This will get her closer to mimicking a nursing schedule in preparation of when she is able to nurse.

The other big news is she is now over 3 pounds!! She managed to gain a whole pound in her first 5 weeks of life which is significant as the first 3 weeks she wasn’t getting any food. As of today she is just over 3 lbs. 1 oz. and is starting to fill out beautifully. It brings us great joy each day to see how she continues to change, grow and get more and more beautiful. Lynsey jokes that she is losing her grandpa booty now that she is putting on some weight. Weight gain is a big deal around here as her progress is gauged in large part by how she is growing. We’ve been told by her surgeon that once she gets closer to 7lbs they will start looking at putting her “plumbing” back together so we obviously want her to continue to gain weight in hopes that she will be big enough before her term date (1 Nov) for them to perform the surgery and allow her enough time to heal before discharge without having to delay her departure from the NICU.

Lastly, due to Emersyn’s progress and stability, the doctors have informed us that we no longer need to feel compelled to be so close to the hospital all the time. So with a little trepidation, we checked out of the Ronald McDonald house and headed north to stay with Nana and Papa Pringle so we can spend more time with Zack. We love spending time with our little guy and get such a kick out of watching him change and making us laugh. He has learned to say the word “more” and is constantly using it to point at the pantry or the fridge to get more food. This kid is hungry ALL THE TIME!! We are thankful that he is such a good eater and loves going out in the backyard to eat Nana and Papa’s cherry tomatoes off the vine. Too bad there aren’t many tomatoes for our salads as they mysteriously disappear each time Zack is playing in the yard . It does our hearts good to be able to spend time with Zack and play with him to offset some of the stress of the NICU life with Emersyn. Balance is the word of the day for us and admittedly, we still continue to try and find what that looks like for us.

Joe goes back to work this week for the first time in almost 7 weeks and this will definitely be an adjustment that we could use some prayer over. It has been so wonderful that the Air Force has given him the time to be with us up to this point and we are so thankful for their understanding and flexibility during this journey for our family. It has freed him up to be here 100% of the time; emotionally and physically which was incredible. It will not be easy for him to be back down in Colorado Springs, but we are confident that this next phase will work out just fine, just a few more miles on the car that’s all .

Good Days

Last Thursday brought us much delight when Emersyn had her first day of feeds and boy does she like her mama’s milk! Unfortunately, she has yet to drink it herself and is fed through a feeding tube placed through her mouth into her stomach as it is still too early in her development, but her body is responding very well so far. She has grown to a whopping 2lbs 9oz and her incision area has been healing slowly but quite well. The doctors said they are proud of her and continue to be amazed with her fantastic strides. We are very happy to hear the positive outlook from the staff and it has felt good to have a few days of uneventful moments !


With Emersyn doing so well, we have felt freed up to spend more time with our little guy Zack. Spending time with him is a breath of fresh air and we’ve enjoyed giggling and chasing him around. Spending time looking at life through a toddler’s eyes is a welcome retreat from the stress of the NICU. Right now, Zack’s favorite thing is to sit and make faces at you to see if he can make you laugh or smile. He’s become an expert at making us giggle too. He’s quickly becoming quite the landscaper as well as he spends long bits of time pushing his bubble-making lawnmower around Nana and Grandpa’s backyard just like his Grandpa. He absolutely loves playing outside. In true boy fashion, he loves bouncing rocks on the concrete patio and running through the sprinkler to eat Nana’s baby tomatoes fresh off the vine. We feel so blessed that he is relatively unaffected by the journey we are making with Emersyn and are so thankful that he is so loved and well taken care of at Nana and Papa’s house. He is a happy boy!!!

As always, we are blessed and so thankful to have such wonderful family and friends caring for our little family!


 

Our Strong Little Lady

The rollercoaster of a week last week brought us much anxiety and uncertainty, however Emersyn is recovering well from her surgery and the staff feels good about her progress thus far. The original plan (as of Sunday morning) was to leave her on the vent for a few days while she recovered and continued to receive the fentanyl for pain management. However, Emmie expedited things when she decided to remove her vent tube and try to take it out all by herself. She is now on the high¬¬-flow cannula and breathing very well. The doctors and nurses continue to be impressed with her very strong lungs and all think that she knew she’d be better off without the vent earlier than they expected. Since yesterday morning they have removed her arterial line, the oral gastro tube, catheter and her intra-venous line. So now she has the ability to move her arms a bit more freely and keep them close to her face which she really likes.


The last two days were great for Emmie to rest and be held during kangaroo care time which is so great for both mommy and Emmie. As is usually the case and par for the rollercoaster ride, this morning we came in to find that Emmie’s incision from her surgery has opened up. The surgeons intentionally didn’t stitch her up too tightly during her surgery last week knowing they would have to re-enter through that site when they put her plumbing back together in 6 – 8 weeks. However, this loose stitching gave room for it to re-open. As for now, we are not clear on what the plan is going forward, but are pretty sure that it will involve just keeping a close eye on the site for infection and changing her dressings daily. We’ve been told that babies just have a way of healing from this and so we wait and watch.

It is our prayer that she’ll heal quickly and stave off infection from setting in and hopefully, she’ll be able to start feeding soon!!! We continue to be impressed by our little girl’s stamina and strength. It is evident to us that this little girl is covered in protection and prayer and we trust that the Lord must have BIG plans for her to bring her through such a bumpy road so early in her life. We feel blessed to be witnesses to watching our beautiful little girl grow and impress doctors and nurses alike. She is so much stronger than we are. We are simply AMAZED!

We love you all and thank you for your support.

Enjoy the new pictures...
 

 

Our Little Sweetheart!

This picture was taken before her surgery on 12 Aug...we look forward to many more moments like this!