The Ups and Downs of Intensiv Pflege Station B

When my world falls apart and the light turns to dark,

When the crowds gather round and the storms overwhelm,

When my heart breaks in half and my strength can not last,

When I'm lost in this land and I can't see your plan; I STAND!!!

On Christ the Solid Rock I stand, all other ground is sinking sand...

~Interface, The Solid Rock

We would be naive to think that Mayla is so perfect, and so strong, and so this, and so that, that we never experience what Keri and I would consider to be "set-backs". We know, and accept, that there will be times when we perceive things as going backwards rather than forwards. This is precisely what happened today. When we left the cardiac ICU last night, we are on an incredible high. Just 30 hours after surgery Mayla once again seemed to be demonstrating her unbreakable strength and miraculous progress. She was extrabated, IV's were coming out, she was breathing on her own, things were looking very up, and so were we. She still had significant swelling and resembled a character from Ghostbusters but believed with time, that too would subside. We arrived today, shocked to see a CPAP mask covering her nose and immediately thought the worst. We had no idea what had happened over the previous 12 hours but could see nothing but the little girl we were playing and interacting with a short time ago, once again looking 100% sedated and barely able to see her face.

As the morning went on, the unit was so busy with other patients in obvious need of care (Mayla was just chilling, maxing, relaxing all cool with her CPAP mask), that we never had a chance to speak with a doctor or nurse about what happened overnight. As we went to lunch, our hearts were breaking, and we were in complete disarray. We were blessed to have friends visit after lunch who offered encouragement that maybe "no news was good news". After all, we hadn't heard from a doctor yet and it really may be nothing. This was hard for us to imagine given that she was so mobile and interactive last night and now was seemingly lifeless. Before leaving, we prayed together and we left to see our daughter once again, still hurting, but encouraged.

Before we can enter the ICU, we have to ring a bell, announce ourselves, and whomever answers will check with the attending nurse to make sure it's okay for us to come in. We were waived in to find our favorite nurse in ICU-B on duty and attending to Mayla. I'm convinced she could see the pain and confusion in our faces and immediately began the long overdue explanation of the CPAP. Until now, all we knew is that Google says CPAP's are used on newborns to help them breath; not great news from our perspective. As favorite nurse girl (don't know her name) started explaining (in German as she doesn't speak much English so Keri understood pretty much everything while I was a bit behind), we learned that the CPAP was in place not because Mayla regressed,but as a means of helping to make forward steps, faster. The swelling in Mayla's body has made it difficult for her to breath so the CPAP helps Mayla to be able to inflate her lungs until the swelling subsides. Leading into the next question, what can be done about the swelling? Favorite nurse girl answered before we could ask. Mayla was given some diaretics to help her urinate in order to flush the fluids from her system. In my manly mindset (read,fix-it), I suggested we crank up the heat and let her sweat it out... Fortunately that didn't happen. The news was encouraging, though still difficult to see her with the mask, and the feeding tube moved into her mouth, which means it goes down her throat and occasionaly gags her, we were encouraged that Mayla is still doing very well and the mask is there to help the process along. With that information we prayed over her and went to our room for a rest.

After a short nap and round of pumping, we headed back to see the Detroit Lions next inside linebacker (I said she is swollen...). When we arrived, we were greeted by a nurse saying that we would have to wait a few minutes because one patient was really struggling. After a few minutes we were ushered in and quickly past the struggling patient, hearts breaking all the while. We arrived to Mayla to see her being a bit more active, and miraculously, starting to trim up a bit. Sorry Detroit, you'll have to wait a while. She is still very swollen in the face and a bit in the torso, but her legs and arms are almost back to normal. Over the next few hours, Mayla woke up and we were able to change her, clean her a bit, play and interact with her, read to her, pray healing scripture over her, and be blessed with renewed vision of her progress. Shortly before leaving, Mayla passed out from the infusion of Mutter Milch (Keri's goods) into her system, so we spent some time praying over her, praying for ourselves, praying for the ICU, and praying for the other patients.

As we left, we witnessed multiple persons coming in to see the struggling patient. Based on what we witnessed earlier in the night and the continuous flow of people into this child's room, we do not leave with a good feeling for this child. We have no idea what the child's name is, nor do we know what is wrong or if the child is really fine following the earlier procedure, but we were moved to pray for the child, the family, the doctor's and nurses, and we ask you to pray with us.

We end this evening's update with exciting news regarding the arrival of Keri's sister Christa, who arrives tomorrow morning and will be the first of our families to see Mayla in the flesh. This is exciting for multiple reasons, one of which is that we did not expect any family to see Mayla live and direct until Christmas. We are very much looking forward to Mayla meeting her Auntie Suz, and Auntie Suz sharing the families love with Mayla. We know she'll come packed with many hugs, kisses and drawings to pass on to our little warrior.

Lastly, we of course ask for continued prayer for Mayla. The big hinderance to her recovery right now is the swelling in her body. The swelling needs to go down so she can begin breathing on her own, for the swelling to go down though, she needs to pee; and pee like an 8-1/2 month pregnant woman (let's be honest, that happens a lot). We sense that once the swelling goes down and Mayla is breathing on her own that her recovery will be rapid. We celebrate tonight for the opportunity to end our time with her interactively, sharing glances in to her eyes, rubbing and kissing her little body. These are such tender moments for us that words do not do them justice. We also celebrate that the diuretics have already begun to help as the swelling in her legs and arms has been subsiding. We also celebrate and praise Him that she is on absolutely NO pain killers; morphin is gone, no aspirin, nothing! She is a tough chick as she has a feeding tube into her mouth and down her throat, plus of course the stitches in her chest; she gets the toughness from Keri.

So we started today on a high, were quickly brought down before making a slow rise and ending once again on a high. We are optimistic for further progress throughout this night, but we submit to whatever plan the Lord has for us and our sweet daughter. She is His, not ours, and He is in control. We continue to be honored and humbled that we were chosen to walk this path with Mayla and pray His hand upon us as we do. Ultimately, we hope that He looks upon us, smiles, and says "well done". Tonight as we sang to Mayla, the song from Interface came on the iPod and that is our theme for now. When nothing seems to make sense, can't see His plan, are confused, lost, or scared, we stand on the Rock, knowing He is our protector and is in conrol.

Thank you for continuing to lift the three of us up to Him, along with the entire ICU and especially this young child and his/her family.

Children's hospitals have the coolest stuff, like a bench shaped like a lizard. 

We absolutely LOVE reading and praying with Mayla.

Is it wrong to manipulate our out of it little girl into poses of our choosing? We think not, and we're not done yet.

An insightful young man noticed there is a lot of pink and stuffed animal goodness surrounding Mayla, but "not enough race cars." He solved that problem for us by donating a few of his own matchbox cars to the cause. Mayla is already smart enough to identify the family cars (Porsche 911 Carrera, hey, it has a back seat and we have seen them with child seats in the back).

And of course Will could not help but enjoy some bonding time of his own, complete with car sounds. Unfortunately you don't see his lips moving nor his engine sounds... 

Every opportunity we have to look in her eyes is a gift from the Lord. 

She REALLY dislikes the feeding tube in her mouth now and seemed to be making every possible effort to try and figure out how to get this thing out, on her own. 

Our little girl is in there. Maybe she'll be on the next episode of "Behind the Mask"...