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 :)

Not What We Wanted To Hear...

Nick went to get us lunch so I'll update while he's gone. Last night she went to surgery at 8 pm and was back in her NICU room at 10:30. Telling her goodbye knowing she's about to be put into a world of pain was the hardest thing I've ever done. She's so beautiful and looks so healthy and perfect on the outside, but her poor body is so sick on the inside. "Plan C" was worst case scenario and at 10 pm we got a call that "Plan C" was in fact what happened. I instantly felt so angry, I couldn't even cry I just wanted to scream. I was so furious in that moment, why God would you make my child so much? Why MY baby? God are you even there, do you even care? I then began to cry and all I could do was hold on to nick and stare at a wall. We were allowed to go to NICU and see her last night, wow I was not prepared for what I saw.

It was a long rough night and morning, my OB is keeping me admitted for another day I was having high blood pressure with a low heart rate- thank you stress. A pastor from my grandmother's church came by to pray for Emmie, he was so kind. I then read a text from my friend Amber Coughlin, it changed my outlook and gave me a quick check. Her wisdom was spot on and those questions I was asking God made more sense and seemed answered. HE does care, yes He made her this way not to make her suffer but to use her and us to show His glory and grace. It's so hard to remember that and accept it but I'm trying.

Medically- surgery also showed a calcified portion of her bowel which is a sign of Cystic Fibrosis. It's not a red flag, nick and I have no family history of CF, it's just a symptom and it needs to be explored. So she is being tested and we should know in a week, with another test at 3 months for further accuracy. I am worried and scared of what the test might say but she's still MY daughter, I love her regardless. She's perfect to me and that's all I care about.

She's still under sedation, using a ventilator, and getting lots of pain meds. Santa came by for pictures today but we didn't want her disturbed or a flash from a camera upsetting her. She is a fighter and I know she'll get through this, I'm going to fight tooth and nail for her every single day.

We've already had a bill collector come by the hospital room. We applied for other forms of assistance but so far it's not looking too good.

Prayer requests- healing for Emmie, to stay infection free, to be pain free, and for a negative Cystic Fibrosis test. Patience, peace, and less stress for Nick and I. For my body to heal from delivery. For God to provide in our time of need however He sees fit.

I Told You!!!

I'm writing this while Emmie is in the OR for her first surgery, I'll update on that later. I need a distraction and I simply cannot cry anymore. Back up- Monday morning I'm feeling contractions that are strong so I head in to L&D, my poor dad had to take me in because Nick was super sick with a stomach virus! They tell me I'm dilated further but not changing fast enough so go home. Monday night I stayed at my parents with my sister and Sophie (nick was still recovering) I spent the whole night in the most painful state. I was contracting constantly, they never stopped from my morning visit. I couldn't sleep they got so painful around 2:30 AM and got closer together, I just laid in bed and took a warm bath then laid in bed some more. At 8:30 I called my OB, she said to come in now and see what I was dilated to and that I'd probably get induced if I wasn't in active labor. Nick picked me up and we got there around 10:30, Dr. Shimer said I was 6 cm and was definitely in active labor! I was so relieved and so frustrated because I had been trying to tell anyone who would listen something wasn't right!!! I got admitted and got my epidural, an hour later I was 8 cm and had my water broken. An hour after that I was 10 cm and ready to push! Labored and progressed that quickly with no pitocin just me which I was thankful for.

Had to deliver with NICU in the room and a neonatologist, a good 8+ people, talk about overwhelming! Took about 4 pushes of contraction rounds and Emery Scarlett Robinson was born at 2:49 PM 7 pounds 4 ounces and 19 inches long. She is perfect had no issues with anything! They did take her quickly to NICU for X-rays and prep for testing. Her tests showed the atresia we knew about but also a calcified portion of bowel. This can be a symptom of Cystic Fibrosis but we are expecting that test to come back negative as it isn't found in either of our families.

I got to spend today snuggling her, holding her skin to skin and staring at her beautiful face. She went to surgery at 8 pm tonight and we still haven't gotten an update. Please pray for successful healing and minimal pain!!! Also, for this to be less severe than they think and Emmie to defy all odds.

When we left NICU and she went to the OR I had a moment of falling in love with my husband all over again. This man is my solid ground, he is everything to me. He is also what holds our family together and leads us. He curled up next to me in the hospital bed, held my hand, and prayed for our daughter. It's moments like that where I'm so thankful God made him for me.

The Waiting Game

We've been holding back on posting info until we knew what would be happening. I got admitted to Dallas Presby 12/11 for contractions and back labor, being 36 weeks and 5 days they do not want to help encourage labor to progress. We really need Emmie to go to 37 and be a "full term" baby. Every day she can stay in helps her lungs grow stronger. Last night was rough to say the least, no sleep and really uncomfortable. We talked with my OB this morning and she believes we'll have a baby in the next day or two, but I have to stay in the hospital until she is born. I miss Sophie so much, being here is miserable by itself but I have never been away from my first baby! Thankfully she is in good hands with my parents and is handling being away well.

We did have an ultrasound this morning which showed Emmie's bowel has worsened, but still not bad enough to need to induce labor- which is a great thing for her health! Please pray her bowel does not worsen any further!!! The perinatal doctor will be monitoring her even closer now,

Nick and I visited the NICU today to prepare ourselves for what is to come. It was difficult, but I left feeling SO thankful. We saw so many 1 pound babies- yes ONE pound! Emery is almost full term praise God she will not be so tiny. We saw two babies who have had several surgeries each, one little girl has had 4 and she's doing awesome! I am thankful our daughter will only need two and that we know about her condition. We got to see babies with picc lines, which she will have. Babies with ventilation tubes, which we know she will need. It was so sad and pulled so hard at my heart, but it brought me some peace to see other babies thriving and to know what to expect. I am thankful we have access to this NICU and the best medical care!

Please pray that when full labor kicks in it will be a fast, easy, SAFE, and healthy delivery. I have not been tolerating the "early labor" very well at all. That Emmie will be strong, lungs developed, and her bowel will not worsen. For the doctors and nurses we are encountering each day, their patience and knowledge.

Here is some funny for you: Nick is being amazing and tolerating my need for a freezing cold room, holding my hand through every contraction. I don't know if I should think he's one of the three wise men or if it's Jesus ;)!!! Love him!

What Did He Just Say?

It's been 35 days since we learned of Emmie's diagnosis. I can still see the doctor's face studying the ultrasound, not saying a word. I instantly knew there was something wrong, but I was not prepared for the news. Emmie's bowel loops were dilated in the jejunal portion of her small bowel. In basic terms, the middle section of her small bowel is swollen and pulsating in a way it shouldn't. All I heard was "your baby will need surgery right after birth, we'll see you in a week for another scan and set you up with a surgeon." Excuse me? What did he just say? This is a joke, I'm 31 weeks and she's been perfect and healthy. He has to be wrong, and he was so cold about it. Nick and I didn't really react, we were both in complete shock. He went back to work, I got in my car and sat there for a minute and let it all sink in, and lost it. He diagnosed her with Jejunal Atresia, we learned it is a rare genetic disorder and we are extremely lucky it was caught. Over the next two weeks we learned we had to switch OB's, go to a new hospital, get a new specialist, and lastly get Emmie a surgeon.

 The surgeon was the hardest meeting. I had to shake hands with this stranger who is going to cut my daughter open from side to side. The man who is going to inflict pain on her for months to come. But also, the man who will save her life. How do you despise yet need someone so much? I do like him though, he is an Aggie so that's a bonus! My prayer request is that he would be given the knowledge and tools he needs to fix her.

 I have up and down days, but strangely I have found some peace in all of the madness. I begged God to not take this baby away from me when I had a hemorrhage at 8 weeks- HE healed the bleed and allowed the pregnancy to progress. I prayed to not go into labor too early- I am 36 weeks and have been contraction medication free. I have prayed for her to be healed- and she will. She may not be healed in the way I would like but I know He is on her side and she will make it through this. I read Proverbs 3:5 recently and it pulled so strongly at my heart. "TRUST in the Lord with all your heart and lean NOT on your own understanding." Without prayer, without God I would be utterly lost and angry. I couldn't face this without my faith.

 I am not ready for any of this but it will come and I will have to be strong for her sake. I am beyond blessed with this amazing man I get the honor of calling my husband, we'll face this together. We're blessed with family and friends who will help us get through this. We're blessed with one daughter who survived health issues of her own, she is incredible and brings us joy every single day. We have a roof over our head, food on the table, jobs to go to, and access to the best medical care. How could we not be thankful, how could you not see God working in our lives? Please PRAY for our daughter, pray for her medical team and surgeon, pray for her healing.