One Year Post Diagnosis

Last year my husband decided to participate in "Movember" so he shaved his face and left this terrible mustache. November 2nd was scheduled to be my last sonogram date, and in my raging pregnancy hormones I was mad at him for looking ridiculous for this "big day." I am reiterating here RAGING pregnancy hormones, I am fully aware that makes me sound like a crazy person! Little did I know that stupid mustache would be the silliest, most minuscule problem to the day, and by far the last thing on my mind. 

It's been ONE year since Emmie's diagnosis. One year since my life became forever changed. One year since this journey began, one that I wasn't sure would have a happy ending. One year since I was handed that yellow sticky note with "Jejunal Atresia" written on it. One year since I found myself collapsed on my bedroom floor a sobbing mess begging God to change this and heal my daughter. One year since I came to terms with the fact that we might not get to raise this little girl. One year since we were faced with some hard questions- would we fight to save her life or would we let her go if things became too hard on her little body? 

This has been the most emotionally draining, physically exhausting, yet most incredible and amazing year of my life. Today, I am not sad or angry. I am full of joy, I am proud, I am blessed. Emmie is 10 months old and thriving, she is so beautiful and happy. She is beyond healthy {and chunky} she has surpassed every expectation, beat all the odds, and knocked out any hurdle that stood in her way. She is fierce, she is a fighter, and in the words of every doctor who has ever read her medical file- she is a miracle. Just today I had to tell a new doctor her history and his response was "And she's alive? Wow, that doesn't usually happen." I am honored to be her mother, she has forever changed me. She has forever changed the lives of strangers who now know her story, friends, family. She has touched more lives in her short 10 month life than I have in my 25 years. Again, I am so proud of this sweet girl. 

I will praise you, Lord, with all my heart; I will tell of all the marvelous things you have done. I will be filled with joy because of you. I will sing praises to your name, O Most High. - Psalms 9:1,2

Praise HIM in times of trouble, pray about everything, trust in His plan. Love the Lord with all your heart and soul. Emmie is such a testament to God's mercy and grace. Prayer got me through the most difficult days, those moments with Christ were my saving grace. I would not have survived this year without my faith, without my family, friends, and even complete strangers who reached out to help. I am grateful for every person who has read her story, prayed for her, thought of her, supported her, loved her. Meals, donations for expenses and medical bills, help with our oldest daughter, letters, cards, emails, texts, calls, visits... all of it helped us get through this year. Thank you, none of you went unnoticed. 

Home and Back.

It's official- I am the worst blogger on the face of this earth. That or there just aren't enough hours in my day! So where are we now...

First off- she went home for all of 36 hours. Let me start by saying it was the most stressful yet most amazing 36 hours. Sophie loves her sister so much. I will never forget those precious moments the two of them shared together and the look on Sophie's face. She wanted to hold her sister all the time and whenever Emmie would cry Sophie would yell OH NO!!! And be so concerned! She would put pacis in her mouth and pet her head saying "niiice." this came from us trying to explain how to be gentle and nice to the baby. She wasn't too keen on me nursing Emmie, she thought she was biting me so we had our first encounter of "Sophie do not smack your sister on the head!!!" Highly entertaining :) I got to sit and rock my sweet babies together with no alarms or dinging, no wires or machines. Just the sounds of Rio playing on the TV, the sink running with Nick doing dishes, and my girls peacefully quiet. That was my happy place.

Unfortunately, what I'd refer to as hell began shortly after. Emmie's bags wouldn't stay on, same supplies same technique as we did in the hospital but it wouldn't work. We were doing changes sometimes back to back every 5 minutes to every 45 minutes. She would scream, we would panic, we knew deep down something was wrong but we weren't ready to give up. We didn't sleep for 24 hours we realized we'd gone through 4 days of supplies in 24 hours. We were almost out, we had ONE change left. Then nightmare number 2 struck, the pump and refeed line were not working. We couldn't get the refeed to actually feed into her bowels, without this she can't gain weight. The pump wasn't working, it was pushing too fast or not at all even though it was set correctly. We were all exhausted, it wasn't fair to keep putting Emmie through this. We were nurses not parents and we knew it was time to call the NICU. We already knew they would be readmitting her but I didn't want to hear it. I put her in bed with me and just laid there sobbing over her feeling like a total failure, telling her I was sorry I tried my best and I loved her.

She's in the Special Care area now. I am back to visiting her everyday and counting down until surgery day. She's 7 pounds 8 ounces now, she's nursing all day when I'm here and taking 150 ml in a bottle when I'm not. She's strong, she's fighting, she keeps me going. Her hair is so red now! She's definitely a little ginger baby :). I need her back home with us, we got a taste of how amazing it was to have our family together only to have it ripped away again.

It's been really hard on all of us since she went back. I've crumbled many times, Nick won't say it but I can see the pain in his eyes. Sophie goes into her sisters room and talks about sister, it breaks my heart. This is our life. At least for now this is how it has to be and we will keep living it. We cannot fall apart because both girls need us strong and that's just your job as a parent. If our family can survive this, we can survive anything. I thank God for giving me a strong and solid marriage, we couldn't do this without each other especially on a shakey foundation. If you're married, do NOT take your spouse for granted. Do not put off working on your marriage every single day. Do not risk facing trials without the strongest bond you can possibly have. Love your spouse, communicate, lean on each other and know without a doubt you can survive whatever happens. 

Best News EVER!

There are no words to describe the joy in my heart right now! Much has happened and I have exciting news to share :)

First- we began "refeeding" this involves taking poo from the ostomy and putting it into the stoma for her lower bowel to process and absorb nutrients leading to her using a diaper like normal, I got to change her first poopy diaper (I know, sounds gross but such a proud moment for me because this means her lower bowel works!!!) Since this was started she's gained weight, almost back to 7 pounds she dropped a little from dumping. She's on very little IV fluids and fats! She's also been erring increased food amounts making her a very happy baby.

Second- biggest best news ever... SHE GETS TO COME HOME THIS WEEK!!! We were told just last week there was ZERO chance of her coming home before her second operation and then today we find out it might be this week! Woah! This is possible because of the refeeding, without it she would be staying. We were prepared for her to stay for over 3 months, you can imagine our shock and excitement. We don't know when it will happen exactly but we are anxious to find out!

Now I know you're thinking wait what about all the bags and tubes? Well, Nick and I are going to become her private nurses. We are learning how to use the refeeding pump, how to thread and insert the tubing into the stoma, and changing the bag out alone. We CHOSE to learn this and do this for our daughter, it's tough, quite frankly it sucks, it's certainly not pretty, and it's not pleasant for Emmie. But we chose this so our family can be whole, our daughter can be home with us and her sister, WE can care for her she doesn't have to be with nurses in a NICU. This is extremely rare for this to happen, only 5% of people in this situation get to go home. Her doctor told us we are not typical people or parents and he believes we are perfect candidates for this because we are so involved with her care, we're motivated and determined, we aren't turned off by the ostomy. He said most parents do not want to do the medical care at home so they opt to stay in the hospital. Her nurse said she has never seen a doctor trust a parent to take a baby home with a refeed tube and machine- we are honored that he feels we can handle this.

Prayer requests- for Nick and I as we learn how to care for her this week and that we will master it! For Sophie as we will be away from her for a night while we are doing a trial run at the hospital overnight and away from her during the days too. For Emmie to keep doing well so she can come home. And for all of those helping us in this process (my family, Nick's parents). Lastly, for minimal chaos when she does come home!

Lastly in my rambles, I need to give my sweet Lord a huge shout out. I have had such a roller coaster of emotions, my time in prayer has been joyous, angry, tearful, praising Him, begging Him for healing. My faith has been challenged but in all this I can absolutely say He was working in our lives every single day, good and the bad days. There is no way I would still have an ounce of sanity without my faith, I will firmly stand by that for the rest of my life. My story, my testimony is different now, it's stronger than it's ever been. HE loves me, loves my family, loves my children- we serve a truly amazing God.

Better Explanations

I tend to be one of those people that just assumes others know what I am talking about and understand it, I'm sorry! It's one of my many flaws :) So, I am writing (two days in a row, woah!) to better explain the things I've mentioned with Emmie. Let me know if I missed anything!

- When I say "output" it means the amount of poo in her ostomy bag. Basically, part of her intestine is outside of her skin with a bag stuck to the skin surrounding it. The poo comes out of the intestine into the bag, which has a small plastic cap that we stick a syringe into and suction out the poo. This is measured in CC's, anything over 13 CC's is what seems to be deemed as bad. Yes, Nick and I do the suctioning. We love being highly involved in her medical care no matter how "gross" it may sound. Every 3 hours when we are there we take her temp, clean out her bag, change her diaper, dress her, check her broviack line, check all her cords, and check the bag for leaks. We learned today how to change the bag itself which is excruciating for Emmie and thankfully does not have to be done often, but always has to be done if it is leaking. Our nurse today told us we are pros and was highly impressed :) GO TEAM PARENTS!!!

-Why is increased output a bad thing? Well, more output means she isn't absorbing nutrients properly. Until that decreases she cannot get more food. It also could delay her second surgery, which means more NICU time. PRAY BIG that this changes and that her second operation will not get delayed. Her weight has continued to go down, she is at 6 pounds 12 ounces now. We need her to gain more weight!

- Broviack line: this was put in during her first operation. It is in her thigh and similar to a central line or PICC line. It was put in by my making a small incision and threading a catheter down through her leg. This is how she receives all medication, fluids, and fat emulsions. The fluids and fat will decrease as her food increases, but for now this provides more nutrients and is helping her weight. The broviack is a more permanent solution so that she does not have to get stuck for IV's every couple days, it will come out when she is ready to come home for good.

- Her feeds are currently at 40, an ounce of milk is 30, so essentially she is getting a little more than an ounce right now per feed. Newborns at this stage are typically eating 2-3 ounces which is why the poor baby is so hungry.

- Stoma, this is a second area where her intestine is outside of her skin. Nothing comes out of this, and eventually they will connect the ostomy to the stoma which will let her be able to poo into a diaper like normal. Once this is going well they will go back to surgery, re-open the same incision from her first and connect the two pieces of bowel together and place them back in her belly. Then stitch her up and all she will have is a kick butt scar :) and then *hopefully* it will be like nothing ever happened!

Emmie will need several types of doctors for a significant amount of time. We will have to be extremely careful with how and what she eats as she grows in her first couple years of life. We will be constantly in and out of doctors appointments too. The surgery sounds so simple but the process of healing goes beyond a successful second surgery. I have a few friends who had babies just before I had Emmie, I see pictures of them going home with their newborns, siblings getting to meet, families all together and I am truly envious. I am human, I cannot be strong every minute of everyday though I am trying. I am jealous that my baby isn't home and laying on my chest and driving me insane waking me up every 2 hours to eat and be changed. But, at the same time I am thankful Emmie is our daughter. I am thankful and HAPPY my friends do not have to go through this, that they have healthy, amazing babies who are home as they rightfully should be. I'm thankful we are strong enough to go through this and care for Emery. I am thankful God CHOSE us to be her parents and that He gave us this trial for reasons we cannot understand. I know that somehow we will be able to help someone else because of this experience, that maybe we will touch someone else's life with what we have endured.

Come Home Already!

Our sweet girl is so strong! She is at 45 CC's for feedings still, we really need her output to decrease so that she can get more milk. Poor baby is so hungry. She is allowed to nurse twice a day now with a 10 minute time limit, no measuring amounts so she does get a super full belly from that! She passes out right after on my chest, it's awesome how snuggly she is! Please pray for her feeds!

Big prayers for her ostomy- it is irritating her skin and because it's so close to her belly button, her cord isn't able to heal. They've put in orders for a wound care specialist to address the issue. It's extremely painful for her, please pray for it to heal and the doctors to find a solution to make her more comfortable, most of all NO INFECTIONS!!!

Her camera bed is gone, I'm so sad I would watch her during the night while I was pumping. Unfortunately they had a micro preemie that needed the bed. Lord I hope these months pass quickly I want her home so badly. I would give anything to wake up to her all night, hold her all the time, nurse her whenever, and to have my family whole all together under one roof.

Nick has to go back to work on Wednesday, I'm terrified of how this is going to go between caring for Sophie and trying to see Emmie, pumping, things around the house, and eventually I have to start working again too. It's going to get stressful but I'll get the hang of it. Just need some patience and strength!

Up and Down

Eeesh, I really need to be better about blogging! I feel like life is nonstop right now, what's sleep again? Starting with Emmie:

She's up to 25 CC's on her feeds, but today they are not increasing her numbers because her output increased. Bummer. She is continuing with no need for a feeding tube thank goodness! Yesterday little miss feisty squirmed so much she tore part of her stitches open, but not enough to need to restitch at least. I got to nurse her for the first time last night, twice!!! It was absolutely amazing and now it's all I want to do. She was only allowed to latch for 5 minutes but I am so thankful for those 5 minutes. They have to weigh her before then nurse then weigh again to see how much she ate. She was allowed 25 CC's the first nursing session she got 36 CC's, minor oops! Second session, same time, she got 44 CC's, MAJOR oops!!! But she handled it well and was so sleepy afterwards. She's never had a belly that full! I am so thankful she latched, I was really worried she wouldn't.

Now for some not so great news. Emmie tested positive for antibiotic resistant staph today, she's not sick and no infection it's just present on her skin. We all live with staph on our skin but the types are different. The only concern with hers is that it's resistant against antibiotics and if it spreads to one of the really preemie or sick babies in the NICU it would be life threatening. So nurses have to wear gowns and gloves now around her and she was moved to isolation. Maybe it will be more quiet for her :) most importantly she is NOT sick from this and we desperately need it to stay that way. She's been in contact with so many nurses, doctors, us and close family, plus the surgery they really aren't surprised that she has it.

Christmas was so hard with all the snow we couldn't get to her :( the whole day was really tough knowing her first Christmas was here and we weren't with her. But we realized it wasn't worth risking our lives on the road, there were tons of accidents and it is already a far drive snow would have made it extra long. We have two baby girls to think about that need both of their parents so we stayed put. We'll just pretend next year is her first Christmas instead!

Being with our families really helped the day and our emotions. Thank you Lord for all of them, I'd probably be checked into the psych ward without them!

I read the book of Job while I was pregnant because it fit our situation. I started it again last night to really dig in to God's word and maybe understand it a little more. As easy as it is to be angry with Him for all of this and my postpartum complications, I will continue to praise His name. The blessings outweigh the bad. How can we only accept the good but not accept the bad? We are not promised pure joy and perfection 100% of the time. Trying to remember that through this.

I'm stuck doing 3 more days of medication trying to avoid surgery for complications. It's really testing me and hard to be away from Emmie yet again. Please pray for this to work so I can get back to being the mom my girls need. Pray for Emery's feeds to increase and her output to decrease, that she will not develop any infection, and some peace for all of us.

Please continue to share her story and her fundraiser, it's so important to us and we would be extremely thankful!

Nothing Stopping Her!

Let me start by saying our daughter is amazing us more and more every day! Here's a run down of the last couple post-op days.

Day 1: continually had great blood gas levels and vent was turned down each time
Day 2: stopped pain medicine, sedation, and her colostomy started working! OFF the vent!
Day 3: still no need for any medicine or oxygen, and her replogle tube went to zero gravity with no need for suction. Got to HOLD her finally and she loved every minute of it!
Day 4: replogle tube removed, got her first taste of breast milk!!! 10 CC's every 4 hours and tolerating it really well! Got to wear clothes for the first time too!

She's beating every hurdle, all of this wasn't even supposed to begin happening until day 5 post op (replogle tube) 7-10 days for feeds. Day 4 and she beat every single one! She's so strong I love her spirit and her fight. Though she is our child, Irish, and a red head of course we should have expected this ;)! We LOVE Dr. Green her neonatal NICU doctor, he genuinely cares about Emmie and us. He always asks how we are handling this and does whatever he can to make this easier for us. Example being today we could not go see her because we ended up in the ER to find out I have major post delivery complications. Dr. Green called to check in on me and even set Emmie up on a camera so we can watch her online! We got to watch a feed, her play with a paci, get fussy, and her sweet nurse Joanna made a cute note "from" Emery telling me to feel better. I love the NICU staff and doctor's so far. She is the hot topic with all the nurses, they can't get over her beautiful hair and I don't blame them!

Tomorrow is Christmas Eve, I wish I could say I'm all in Christmas spirits but it just doesn't feel like the holidays. I want both if my girls home with me, I want to wake up Christmas morning snuggle them both and have that perfect "this is right" moment. But it isn't going to happen so I am going to be utterly thankful that I even have both girls, that I have such a loving husband, huge support from family, and so much love in my life. Next year I'll get that moment and for many years to come, I'll hold on to that.

Thanks to everyone reaching out, the meals are really appreciated and the donations are a HUGE HUGE help! It's helped us with the first hospital payment and food/gas for traveling and living at the hospital lately. Please continue to spread the word about Emmie, I swear she's done so well because of all the people storming heaven with prayers for her.

Prayer requests: positive response to feeds and increase amounts, that she will take to the bottle (she doesn't like it very much), that she will latch when I'm allowed to breast feed her, continued healing so maybe she can get home faster! For Nick and his sanity he is doing so much for us. For me, that my complications would heal and cease, that my milk supply will continue to increase (I have to pump and dump for the next 7 days I am genuinely afraid it will go down or she will supplement formula which we do NOT want). Also, a prayer for sweet Sophie this is hard on her and she doesn't understand. That we will figure out how to meet her needs too and always make her feel loved and not forgotten. For my parents and sister who have helped immensely by keeping Sophie, for their sanity :)