Keri's turn...

I’ve never liked rollercoaster rides. I remember going on my first ride. We were with some family friends and the dad sat by me as I was a little apprehensive about the whole thing, well a lot actually. After the ride was over he said that was the first time he had ever seen me without freckles, my face was white. I’m sure I stopped breathing for the whole experience as fear ran rampant through my whole body….I walked away confident that if I never did that again my whole life, I would be okay! I’m now finding myself back on that rollercoaster ride, and even though, just like that day when I was a little girl, I didn’t like it, I survived, and I’ll survive this too!

Welcome to our blog! We started a story, we started an adventure, and we started a journey that many of you have traveled on with us, and we want to keep going….together! The reason for the blog is to more simply (for us) update family and friends about what is happening with our family. Before, we were sending emails, Facebook, and other stuff to keep all the peeps in the know. Going forward, all you want to know about our family (well maybe not all…) can be found here. So here we go, thanks for joining us!

Thursday, September 27^th, a day I will never forget. We woke up eager that day, in great anticipation that ‘today’ would be the day we could ‘free’ our girl from the children’s hospital. But the week had so many ups and downs, we tried not to get too excited! Excitement showed up when we arrived into the NICU that morning and heard the words, ‘she has gained weight, has been off the monitor for 24 hours, you can put her own clothes on her and bring her home’. I cannot even find words to describe what that felt like to hear. I’ve replayed that conversation over in my head a thousand times and my body still floods with the chills.

She was peacefully sleeping in her bed, so we left her and ran back to pick out the perfect take home outfit. We had brought a few different items, not sure what the temp would be like, not sure how big she would be when we could finally take her home and to be honest, not sure really what would fit her. For three weeks others had been picking out her clothes (and many days I wondered where they got them from) and dressing her, and now it was our turn. When I first went shopping for the ‘perfect take home outfit’ MONTHS and MONTHS ago, this situation was NEVER one I envisioned, and to me, the take home outfit had even more meaning now.  We were claiming her as ours, something for 3 weeks I was unsure of. We ran back to the place we called home and Will and I were moving about frantic like, unable to process a clear thought or figure out what to do. We started packing, and then realized we can get her out, then pack. We walked back to the Kinderspital, and this time the walk over held a different feeling. One of hope, freedom, excitement and of course, nervousness. We had walked that walk so many times in fear of what laid ahead for the day in the children’s hospital, it was weird to think that our day was not going to be spent there. We could actually even have dinner at home.

We unfortunately had to wake our sleeping beauty up to get her dressed, but she handled the disturbance rather well, and then we did it, we put on HER clothes that we had picked out. My heart was rejoicing, and a sense of mothering showered upon me as I was finally able to care for her in a new way. We then picked her up, wrapped her in HER blanket and started towards the door. We thanked the nurses, and gave many smiles. I wanted to run up and hug each of them personally, they had been our family for the past 3 weeks and I appreciated them and I wanted to go and kiss all the babies good bye, even though I didn’t know them, I would miss them!

We walked out the door, and coming in was Emile’s mom. I was nervous at first when I saw her as she has never made eye contact with me nor said a word to me, my first reaction was to just walk by, but then I stopped, looked her in the eyes and said, ‘All the best for your family’. Surprisingly she smiled and said the same for ours. It was a heartfelt moment, and I’m glad I said something. Having that run in was not easy for me though. Their little daughter had been there longer, and we were the ones leaving. My heart was torn, I was excited we were the ones leaving, but my heart broke for the others who had to stay behind. It was a hard moment. We then walked down the NICU hallway, a hallway that held so many different emotions, but today it was a hallway of freedom. I was sad that I would not get to say goodbye to some of the other mothers I had gotten to know and before I knew it, one mom came out of the bathroom right in front of us. We embraced and once again I was torn, I wanted her son to be going home too. There is a bond that forms between ICU and NICU parents, and even though I’ll probably never see those parents again, I feel connected to them! We carried our girl with pride and out the doors we went. We had dreamed of this day, longed for this day and hoped for this day and by the grace of God, it was now here!

Our journey home was perfect, Mayla slept the whole way! She kept sleeping even when we entered the doors of our flat. As she laid peacefully asleep in the car seat, I resisted the urge to ‘get stuff done’ and ‘tried’ to sleep, but the prima grin on my face kept me awake. I had thought so much about what this day would look like and here it was, right before me! The first night was great. She ate well and actually even slept well. I was elated and looked forward to this new journey the three of us were on. Then day one hit, first full day home, and I was no longer looking forward to the journey! A switch was flipped and Mayla was one unhappy baby!

Mayla would cry, and cry and scream and scream. The only place she seemed happy was on the red bouncing exercise ball or sleeping in our arms. I was confused, scared, frustrated and felt helpless. I had been babysitting for over 20 years, and never saw a baby like ours. She would be in a dead sleep and just scream out in pain, she was so stressed and sensitive I didn’t even know how to handle her. We had dreamed so much of getting our girl out of the hospital. We would always say to each other as we sat next to her in the NICU or ICU, ‘it will be so much better when we can get her home, it will be so much easier when we are home.’ We were now home and NONE of this was true, and I just wanted to go back to the hospital. Mayla’s disposition was taking its toll on me, on my husband, and on our marriage. We went from being this strong team to separate people, neither of us sure who the other one was or how to handle these new feelings that had never been present in our marriage. I wanted to be a good wife, and at the same time be a good mom, and I felt like I was failing at both. I wanted it to be better. I thought about bringing her back to the hospital, I wasn’t ready for this and hoped they could take her back. It was hard there, but we could leave. When things got to be too much, we walked away, we went and got something to eat, or went for a walk, we had outs. We could leave her every night and re-energize, connect as husband and wife and had time to get strength from each other and the Lord. All that was lost when we came home. I was torn, and I was scared. The little girl I had dreamed about for so long, was now in my arms and I all I could think was I didn’t want this one, this was NOT the baby I dreamed about.

Up until that point I had a hard time praying. What do I ask God for, what do I even say to Him. I had so much pain and confusion and was angry at Him for doing this to us. Wasn’t the three weeks we spent in the hospital already enough, why more, why us? I wondered when I would be able to make it through a day without hysterically balling. I felt Satan in our midst, and no matter what we did, he remained. He tried second by second to break us, to kill the bond between daughter and mom and daughter and dad. He tried relentlessly to break up our marriage and come between us in every way possible.  He beat my husband down, day after day, and took his punches at me too. Then one night, bouncing on the ball, trying to bring my daughter some peace, I was balling my eyes out and crying out to the Lord that I could not handle it any longer, I was done. He then reminded me of Job, and reminded me that he will not give me more than I can handle! I knew the Lord had a plan in all of this, and I needed to find a way to get past the self-pity and start saying, thank you Lord, thank you that I’m traveling this road, thank you Lord I’m worthy of being able to endure this situation with you by my side and thank you Lord that you gave me THIS special girl to love. I started each day with a new attitude and wondered through all of this, what is the Lord trying to teach us.

I was really struggling with Mayla’s personality and humbled over and over by her. I’ve been babysitting for so long, and been called the baby whisperer on more than one occasion and now here was my own daughter who I could not calm or soothe. Humbling indeed. I’ve always been praised by others for how I was with children, and was always told, ‘you’re going to make a great mom some day’, and here I was wishing this child was not mine and feeling like the worst mother in the world, and I never knew what to do with her and I was scared to leave home with her. Humbling indeed. When I was pregnant and saw other mother’s or heard of other stories, I would think to myself, ‘that won’t be me’, or my daughter won’t_______’ and here I was, HUMBLED! The Lord was trying to ‘sweetly break’ us and it was hard (and still is). I started to throw everything to the cross, and try to be a strong tower for my daughter, she needed me and the only way she would have me is if I rested in the loving arms of my Lord and Savior. She not only needed me, she needed us..Mommy and Daddy. She needed us to get past ourselves, and work as the team we knew we were.

We never expected to go through any of this with Mayla. We never expected the heart surgery, we never expected the hospital stay, we never expected to live near the hospital the first three weeks of our daughters life, we never expected to see the things we have seen, and we never expected such a rough start at home. We were kind of hoping for a ‘get out of jail for free card’ once we arrived home and that has not been the case. We have learned over and over and over and over that our plans don’t matter to the Lord, and we can think we are in control of every situation, but eventually He will prove that He is the one in control. We’ve learned that we can try to plan, but if we don’t consider the Lord in our plans it will most likely end in a disaster.

Last week we were studying up on having a high needs baby, and what our life would look like with a child that we could never put down, and never leave alone. We were worried and stressed over what this new life would look like and feeling weighed down by all of it. And then came Thursday. Weeks ago I had been referred to an Osteopath doctor for Mayla and out of desperation called and made an appointment. The original appointment was not until November 1^st, but I received a call that day that they had a cancelation; I was elated and ready to see what this was all about. The appointment was an hour long and it was so fun sharing Mayla’s story with the doctor. We walked out of there a little leery about the treatment but figured we would wait and see if we noticed any difference in our little miracle baby! Well we didn’t have to wait long. That night sweet baby Mayla was content for over 2 hours and was so chill it was amazing! We thought maybe it was a fluke, but Friday a happy little girl showed up and stayed around all day. I went to bed shocked and excited to see what today held. And once again, a happy little content girl has emerged who has now taken two naps with no one or NO thing holding her. I keep looking at her, smiling and saying THANK YOU JESUS! Will and I have said a few times today that we have received a new daughter.

We have now been home with Mayla for one month, and each morning I have woken up and told myself I need to just survive this day…and I have! And there have even been days I’ve done it with a smile on my faceJ I’ve even managed to make it some days without a massive break down, without shedding any tears. I’ve leaned more on the Lord and have felt a renewed strength, and a renewed hope.

Mayla is a special girl, with a special story and she knows it. She has had a rough start and you can tell she is still trying to figure things out and we are here to help her along that path! Will and I have had a rough start, and we too are still trying to figure things out, and we are looking to the Lord for help along the way.

Looking back I wouldn’t change anything, I wouldn’t want this any other way. I have seen Mayla go from a vegetable state of being, to totally stressed to a happy little girl. The journey has been intense but I’m loving seeing more of her personality come out every day and how to parent this special little girl!

As confused as we have been about the way our daughter has been acting, we are just as confused as to what the Lord is doing with us. We continue to pray for a job for Will and look forward to the Lord filling us in on his plans, whether it be in America or Switzerland, or……Despite the uncertainty, it has been a blessing that Will has been around for this whole journey. We can see the Lord’s hand in the timing of it all and we are so grateful for it!

Thank you again for your continued support and encouragement. The cards, gifts, notes, emails, and facebook messages have meant the world to us as we have journeyed from ICU to NICU to ICU to NICU to home. It’s been an interesting adventure and we know it will only continue!  

3 weeks + 3 weeks = 6 weeks

Goodness, is this overdue or what? Rhetorical question…

WARNING: this is long and no CliffsNotes available. If you do not know what CliffsNotes are, visit http://www.cliffsnotes.com/about-cliffsnotes.html.

So we spent 3 weeks at the Kinderspital with an update almost daily, and now 3 weeks at home with nothing. Not because we haven’t wanted to… To say we have our hands full with Mayla would be a slight understatement.

We (all 3 of us) have been through the proverbial “ringer” since coming home. The first night was probably the best in terms of amount of sleep allowed by Mayla, maybe she still had some drugs in her. Since then Mayla has quite a few up and down days but this is seemingly “normal”, I guess. We have had plenty of struggles, some of which seem to be normal for any new set of parents, adjusting to day vs. night, sleeping at night, constant crying, trying to figure out what the constant crying means, difficulty going to sleep, difficulty feeding, etc. But we’ve also had some “things” that don’t seem to be so “normal”, some of which may impact those that seem to be “normal”. We’ll touch on each of these briefly.

One of the more pressing issues seems to be a significant amount of discomfort coming from her stomach. I really don’t know how to describe the sounds that come from her abdomen, but it may resemble the garage area of a NASCAR race with terribly running cars, and no mechanic to tune them. This is also something that happens almost continuously, not only around or after feedings. Unfortunately for all of us, there is not much a pediatrician can do about the situation given Mayla can’t talk, yet, to explain what the issue is AND she continuously gains weight despite the aforementioned feeding struggles. We theorize that this feeds into some of the other struggles making life not quite as pleasant as it could be for our little girl.

Another is that Mayla seems to be ultra sensitive, possibly looming from the tummy stuff in some respects. She does not respond kindly (and she’ll let you know) to being moved, picked up, passed to others, and quite often touch if she is laying or sleeping peacefully. This includes being transferred from one parent to the other, even going from Dad to the “all-healing” Mommy.

Mayla is also extremely tense. Fists clenched, arms and legs bent and flexed almost all the time. In fact, when we hear her stomach rumble, if she isn’t all clenched up she quickly assumes the position. If she is already clenched up, she demonstrates Ninja like moves unseen for centuries. Really quite amazing.

You ever watch one of those action movies where some crazy dude does something you think is nuts, like jump from a 10 story building or cliff and you know he’s going to get hurt, then when he does, he unleashes wretched screams of pain and agony? Yeah, that sporadically happens in our ears, for no apparent reason, though we “think”, it may still be associated with tummy pains. It’s agonizing to hear, and even more so to witness. Simply breaks your heart because you can see pain in her face but you have no idea where it comes from.

You ever see that cartoon episode with Pluto where he accidentally gets drunk and gets the hiccups and they violently shake his body and his little puppies get sky-rocketed off his body? No? Here: http://www.youtube.com/watch?v=OEmYbWDqHyw. Though this is not an exact representation, Mayla gets arguably the most vicious hiccups I’ve ever seen. Every time it reminds me of a cartoon similar to this one with Pluto or another where the characters head shoots straight up off their shoulders though still attached to their neck. As you can imagine, this wreaks havoc on an infant almost immediately bringing tears and looks of “what the heck is happening to me dad?” She gets these following almost every feeding, and not always immediately following, sometimes an hour later and is even awoken from her sleep. We actually should have expected this since she had the hiccups all the time in utero.

When she is tired and desperately needs to go to sleep, if she is not crying, she is fighting going to sleep. At first, it’s super funny because you watch her little eyelids slowly close, like a draw-bridge coming down in the middle of rush hour traffic and you are already late for work (slow-motion style). Then, just as her upper eyelashes gently and loving and sleepingly touch her bottom eyelashes, they quickly pop up like a teen-age boy getting caught by his dad kissing a girl. She fights going to sleep daily as if she is going to miss out on something, like we are secretly having a “she’s asleep” party. We try to explain that it is nothing like that, in fact we are usually begging and pleading with her to sleep so we can sleep too. We have begun theorizing that she heard too much Schwyzerdütsch in the hospital and she doesn’t understand English because she keeps fighting.

In addition to the above mentioned sleep deprivation routine, her yawns (the big ones) seem to be exceedingly painful. The ones where it seems she is going to yawn out of her own body and stretch her arms or legs right off her body. Those ones must be painful because she tends to let out these hideous cries of pain and agony and “am I gonna die dad?” immediately following them. Further disrupting the possibility of going to sleep or drawing her out of a light sleep.

Lastly, (I think, as if it’s not enough) feeding has improved while at the same time worsening. While in the hospital, one of our prayer requests was that Mayla would adjust to nursing, particularly as we left for home. Well, prayer answered, in a BIG way. To the extent that she no longer likes to take a bottle and has no problem expressing her displeasure with the fake, clear, hard, uncomfortable plastic thing. To be honest I don’t blame her, but this isn’t about me. This makes for a VERY tired Keri who has to nurse and pump at all hours of the day. Mayla also occasionally screams out in seeming pain during feedings, again, sporadic and for no apparent reason but has extremely painful looks on her face. Until a few days ago, she absolutely would NOT take a bottle. We have decided to be diligent in our attempts and have found a strategy that is working; unfortunately it requires 4 hands, making individual outings difficult. Adding to the feeding complications, she is a VERY sporadic eater. No schedule or consistency whatsoever. Nor is she regular in how much or how long she feeds. As of late, in the evening she seems to act as if we have never fed her before while during the night she may feed for 5-10 minutes before passing out like a drunkard. This however causes more frequent feedings through the night. You can see where that goes, tired momma. In the morning she is incredibly irritable like your trying to feed her brussel sprouts or (insert your least favorite vegetable here) and has no desire to feed except she is starving to death AND super tired because her sleep was probably not all that restful.

To summarize, Keri married a high maintenance man and he unknowingly passed that gene to his daughter. For the record, we joked from the beginning we will get 1 of 2 children. Child 1, and probably the more preferred of the two, who receives all the good stuff Keri and I have to offer the world. Child 2, and the one we seem to have, who receives a few of the good stuffs and a load of the not so good stuffs. Despite all this, she is one of the greater gifts we have received in our lives.

And while we have had our share of struggles, and if you count the 3 weeks in the Kinderspital one could argue more than our share, we have had some incredible moments and witnessed many, many miracles and amazing blessings. Under the direction of a man I know and love and respect greatly, I am going to go through and make a list of all the blessings and miracles we’ve witnessed and experienced because though the struggles can not take our joy, they sure can knock us down a notch or two. Once we have done this, we’ll post it to brag on how good, awesome, and great our God really is. For now, I’m going to “briefly” recap the since-home blessings.

•           Prayers for Mayla’s lungs have been answered. We now realize we probably should have spent less time praying for Mayla’s lungs…

•           Mayla’s heart is “perfect”, according to the pediatrician. We go to the cardiologist on the 29th and look forward to their prognosis as well.

•           Mayla has well adapted to nursing, prayer answered, though we probably should also have prayed she would continue to readily drink from the bottle.

•           When we left the hospital Mayla was prescribed no at home medication, a miracle in it’s own right, but we did have to add 5 grams of formula powder to 100 ml of milk twice per day so she would continue to gain weight. After just a few days, and 20+ francs for a can of formula we barely touched, we were able to take Mayla off the powder additive because she was gaining too much weight.

•           She seems to have learned the difference between day and night, despite the fact she wants to stay up for the party that never happens.

•           She REALLY likes hanging out on her changing table and having her diapers changed. In fact, it’s one of the few places she can just hang out. We prayed about diaper changing before coming home because she did not like it at the hospital. She has no problems here though. In fact, if she is on her table when getting the body deteriorating hiccups or limb-popping yawns, she doesn’t cry out in pain. Hmmm.

•           Mayla has also, FINALLY, begun to fall asleep on her own. Not all the time, but every step forward is a blessing.

•           She really seems to enjoy taking baths. We suspect she fancies herself an Olympic swimmer already (don’t tell the cardiologists, they said no Olympic competitions) and finds bath time an excellent opportunity to practice. Tonight I think she was into water aerobics/gymnastics and tried jumping out of the tub.

•           We are learning new methods to keep Mayla sleeping when laying her down. It often involves strategically placing arms, hands, and any other necessary limbs, in such a way as to not move any part of her body. Again, not every time as we are still learning, but every step forward…

•           The pediatrician has recently given us some medication that “might” help with her stomach issues. We cannot say for sure if it’s working or not, but it could be. The symptoms we suspect are related to the tummy are more sporadic the last couple days, but there is a chance the meds are helping. Time will tell for sure, maybe…

•           In Keri’s 8th & 9th month of pregnancy, she learned about the bouncy exercise ball and the benefits of sitting on such a ball. We also heard vicious, scathing rumors about how the ball helps encourage not-yet-borns into dropping and making their appearance. While it didn’t help at all with getting Mayla out, we have learned this same ball is exceptionally soothing for Mayla, and might be one of the only things that can soothe her in almost any situation. Downside, it’s tiring and boring to bounce on that thing for hours straight, and you can’t get any work done, and the continuous motion puts me to sleep (only slightly unsafe) and makes Keri sea sick.

•           I am a Moby Wrap stud. That’s right, stud! I will put my Moby wrapping skills against anyone, big, small, male, female, young, old, alive, dead, whatever. And Mayla likes to hang with daddy in the Moby, at least that’s what I think because she falls asleep.

•           Mayla smiles at us

•           You can tell she has begun to recognize us

•           You can see she loves us and wants to be with us

•           She makes us smile and laugh

•           We continue to fall more and more in love with Mayla

•           We fall more in love with our Papa for all he has done, is doing, and will do

So that was pretty long, and only about Mayla. Still to come is my journey (otherwise known as shameful confessions) through all of this and I’m sure Keri will add her own experiences as well. So consider this part 1 of a 3 part series, I guess. Sorry we waited so long to get this out, but if you have had children, you know we were not exactly “waiting”…

If you are still praying with us for our treasured daughter, please pray with us through the struggles we mentioned. We are completely convinced, given our vast medical knowledge & Google, that without the tummy issues (if in fact that is her problem), she would be completely cooler (cuz she is already cool in her own way). Also celebrate with us for the awesome things the Father has done, and even that are to come. Thank you all for your support and prayers, friendship, and emails checking in while we seemed to have vanished. We love you all, and may the Father who is in control of all things (even when it seems that may not be the case), encourage and comfort you through the work he has done with us and especially with Mayla. He continues to reveal himself and challenges us to grow outside of ourselves, and for that we are blessed and incredibly thankful.

passed out on the couch, probably faking it though

this passed out is for real

trying to emulate the sleeping environment she "seemed" to enjoy at the hospital; didn't last long 

tub time

graduation night for the new family; Mayla had a feeding during the ceremony so Keri didn't actually see the graduation though...

size comparison

just cool

more happy bath time

yup, the infamous bouncy ball

King Moby

first trip to the pumpkin farm

she's just cute!

more of our adorable daughter...