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 .