Almost Three Months!

Where in the world has time gone? We’ve been home over a month and it feels as if we just left the hospital and as if the hospital is nothing but a distant dream. Fiona is doing absolutely wonderful. She has had a few doctor visits and everything has turned out great. She is almost 14lbs, just graduating out of 3 month clothes and into 6 months, smiling, sleeping and thriving. The beginning of August meant our first trip back to Seattle from Spokane so she could be seen by the surgeons and they had nothing but wonderful things to say about her. She continues to amaze us all with her growth, success and girl power.
While I wouldn’t change a thing about her, we are also still having a few small hills to climb. She is still receiving most of her nutrition through her ng tube, but she can take just under a third of the total amoint in a bottle. We are working with a dietician and feeding therapist to increase her nipple intake and we have our first appointment with a lactation specialist next week to get her to atart nursing. I am continuing to pump about 5-7 times a day for more than 30 minutes each time so she can consume mostly breast milk through her tube. Her blood clot that she formed due to her PICC line puncturing her artery is still there and she receives twice daily injections of a blood thinner. We are all tired of the injections but they are just one more way that she is showing us how strong she is.
Fiona is a fighter and shows us her strength and determination everyday. She knows what she wants and how she wants it and for that she fits into our family perfectly. Her battle with CDH is far from over. I don’t see her coming off the feeding tube anytime soon and she will forever carry CDH with her. But, she has already shown it that she doesn’t back down easily. Thank you so much to everyone for your support and please keep her in your thoughts and prayers as we await our next appointment in Seattle in just over a week from now!

Update:

Wow… It has been over a month since my last post! Where in the world did time go? Let me try to start where I left off…
Fiona was transfered to the surgery floor where there is less attention placed on each patient. While this sounds careless, it was actually a good thing for us. I was told by the nicu nurses that on the “floor,” the more I can prove to do, the faster we can go home. So, I did everything I could. I changed her diaper every time, I bathed her, I learned how to give her medication via an injection, I changed out her ng tube ( nasal-gastric tube that carries nutrition to her stomach through her nose), and anything else I could get my hands on. I took charge. However, through all that, the only thing keeping us in the hospital was the high flow oxygen she was receiving. She would do “sprints” off of the oxygen for hours at a time and her O2 stats never changed. She did great! Even when she would be so upset during diaper changes, her O2 was 100%. But, they couldn’t have weaned her slower. By this time, my husband, Ted, had to bring our son back home so it was just Fiona and I in the hospital, alone. You never know how much you depend on someone until they are gone. I wouldn’t leave her room for fear of her crying and no one coming. I would go without eating for hours and hours just so she wouldn’t be alone. The nurses actually kicked me out of her room one evening and stayed in the room with her while I practically ran to grab something very quick to eat. I was starting to lose my mind. Then came the 4th of July…
Even though Fiona and I were prisoners of the hospital, we were reminded that the employees were not. The holiday was on a Thursday which meant that all the departments (pulmonary, hematology, occupational therapy, etc.) were granted a four day weekend. Fiona was doing 12+ hour sprints off of the oxygen assistance and she was being increased by 1-2 hours a day, even though she never once showed distress while off of it. We were being told that the ultimate decision to take her off of it was pulmonary’s and they were gone all weekend. So, we waited… Home was so close I could smell it.
While all this was going on with Fiona and I, Ted and Kingston had their own adventure. A few months back Ted had dropped a few hints to his boss that if something were to open up in the near future we would like to be transfered to the East side  of the state. The house prices in Spokane are a lot cheaper than the Westside and Kingston has cousins in Spokane closer to his age. So, the bug was planted in Ted’s boss’s ear. Time went on and he was offered a new store in Standpoint, Id. While it was the side of the mountains we wanted, we were told he wouldn’t be needed over there until February 2014, and that timeline gave us enough time to get Fiona out of the hospital. However, two weeks into Fiona’s hospital stay, Ted received a phone call saying a gm in Spokane walked out and he was needed in just a few weeks, on July 7th, 2013. A little bit sooner than we planned. So, Ted left Fiona and I in the hospital on June 27th and picked up our toddler to head home and pack up our life. So, while half of our family was in Children’s Hospital in Seattle, the other half permanently moved across the mountains 8 days later, the same 4 day weekend everyone else took off. July 5th was one of the worst days I’ve ever had. Half of my family was moving so far away and it felt like they were leaving us behind. Fiona and I were stranded and I really couldn’t see why. She was breathing great on her own, taking breast milk through her ng tube, using bottles 4 times a day with little difficulty, I was administering all her medications and the nurses would even comment on how nice it was to just get me the supplies and allow me to do everything. But, there we sat.
While July 5th was difficult, Monday, July 8th was so wonderful that I had such a great cry. That morning in rounds, the docs came in, took her  permanently off the oxygen and asked me what day we wanted to go home. I eagerly said Wednesday, July 10th and I started to receive everything we would need to leave and go home: referrals to feeding companies, therapies, nutritionists, surgeons, clinics for blood draws, developmental resources, all in Spokane. We had visitors in her room every hour teaching us a new skill or helping us pick professionals on the East side. Eventually, Wednesday, July 10th came and it was time. Time to go home!
Our family of 4 has been together for 19 days now and I am so thankful for every minute of every day. Fiona is doing great in the intense heat of the summer and she is loved by everyone. She smiles, coos, moves her arms and legs, poops, and everything else that a 2 month old baby does, just with a lot more attention 🙂 Fiona has a feeding therapist working with us to move from the ng feeds to oral feeding, a pediatric dietitian to monitor her calorie consumption, clinic visits weekly get her blood drawn to adjust her blood thinner accordingly, a new pediatriton who has experience with cdh, a developmental therapist to make sure she continues to develop socially and cognitivly, a Family Resource Coordinator to ensure that our family gets all the support we need and more people than we would have ever thought supporting and loving her.
Our journey isn’t over. She will forever have a Congenital Diaphragmatic Hernia and we always have to be cautious of red flags but she has already overcome so much and we are all so blessed to have her in our lives. My heart goes out to everyone on our journey who prayed for us, thought of us and supported us through everything. You have given us more strength than we ever knew we had. Thank you for reading my blog and I promise to write more often. Thank you, thank you, thank you!!!!

Audios!

Goodbye NICU! Yesterday we were evicted from the nicu for being too healthy. We were told to shipmout and Princess Fiona was taken in her chariot to a new floor with new nurses, treatments and objectives! We are on the surgical floor with every other child that has needed surgery. However, since we will be here longer than most, we have our own room! It’s bigger than the nicu with a better view and a bed for mommy and daddy to sleep on! Yippee! Except, we have been thrown into the reality of taking care of a newborn who doesn’t always sleep all night and nurses that check vitals every four hours. Let me just say that a nap is in the near future for dad and I.

While we aren’t going home in the next few days, we did realize that we weren’t prepared when that time would come so we finally picked up a car seat! It is in our room here and it makes coming home even more of a reality 🙂

Fiona is losing all her jewelry! She is becoming lighter with less tubes and holes in her body. Here is the most recent update:

Fiona is:

*off her ventilator! She now has a high flow nasal cannula. This is the tubing that has two little prongs that go up her nose and give her oxygen. She is breathing room air (oxygen level at 21%, just like what you and I breathe) with 2 liters of pressure. (That is pretty minimal support)
*off her morphine as of this morning with the occasional suppository of Tylenol
*sporting an ng tube! This is a tube that is inserted through her nose and carries food into her stomach. Yup, all that breast milk that I have been pumping for 25 days is finally being used! She is receiving 5ml/hour and tolerating it very well.
*almost 9lbs!
*only receiving liquid nutrition (tpn – total parenteral  nutrition) through her picc line, which is the only hole being poked into her little body.
*off her lipids, which was pretty much fat in a syringe.
*moving her head from side to side. Despite her valiant efforts while on the vent, she was unable to move her head much. However, now that she only has her hfns (see first bullet point) she is more mobile with her head and neck.
*scheduled to meet with Occupational Therapy/Physical Therapy today to work on taking breast milk orally! Yippee!

I feel that while everyone that reads this hopefully knows that Fiona has Congenital Diaphragmatic Hernia, CDH, many may not quite understand the full extent of it. Around 9weeks in utero, Fiona’s diaphragm (the muscle that seperates your chest from your abdominals) failed to fully form, therefore leaving a hole. Her hole is on her left side, which means she has a LCDH. Because of that hole, her bowels, spleen, stomach and appendix traveled into her upper chest, which meant that her heart was shoved to the right side and her lungs did not have enough space to fully form. Her organs stayed and grew in these new locations until she was just 3 days old and had her first surgery. The very skilled and precise surgeons made an incision on her left side and carefully brought her stomach, bowels, spleen and appendix below her diaphragm and sewed shut half of the hole and plaved a small gortex patch over the other half. This then gave her lungs more room to grow and breathe and her heart more room. However, because of the previous and now current placement of her organs, they needed time and space to become accustomed to their new locations and surroundings. That is why Fiona had her first poop at 20 days old, her stomachs first taste of breast milk at 23 days old and her lungs first breath on their own at 19 days old. All of these “firsts” for her happen to most newborns on day 1. But, CDH doesn’t stop here. We will forever have to be cautious of her body rejecting the foreign patch, the hole in her diaphragm opening up again, her lungs working too much too fast, infections that are nothing to you and I becoming another hospitalization for her and so many other issues. Remember, she is 25 days old and has yet to taste anything on her tongue besides a ventilator and a Binky. What can you do to help her? Support and spread awareness of this condition so that more research, time and money can go into finding out why this happens and what can be done to help those with it.

Here are some great places to go to support, educate and help:
http://breathofhopeinc.com
http://www.cherubs-cdh.org
http://www.seattlechildrens.org/medical-conditions/digestive-gastrointestinal-conditions/congenital-diaphragmatic-hernia/

Thank you!

I swear, she’s a happy baby! Haha!

The Long Version

Before I talk about my precious angel, let me just say that I am never buying cheap shampoo again. I bought a large bottle of shampoo and conditioner to use down here and my hair hasn’t felt clean since we “checked-in.” Grrr… (Rant over)
So… A few days after her first surgery (6/3), her chest x-rays started to show some fluid hanging out in between her lungs and her ribs, in her chest cavity. The fluid would shift from her left to her right side and then switch back again. Since her lungs are already “plastic-y” adding any extra pressure on them is not good. Around this same time, her abdomen started to show some redness. Well, as the days progressed, the redness and fluid increased. Her body temperature increased as well… As soon as she showed a temp of 38C, she automatically had a urine culture, blood culture and lumbar puncture. After those samples were sent off to the lab, she was placed on two antibiotics and one anti-fungal. The immediate tests came back negative for anything suspicious and the potential growing of any bacteria started.
On 6/13, a chest drainage tube was placed on her left side to relieve some of her fluid. To put it gently, the fluid started flowing… To date, she is up to 700ml. However, the mystery of her swollen red belly still continued.
After talking to the doctors, who talk to the surgeons, who talk to us, who talk the doctors, who talk to us again, who talk to the surgeons, who talk to Infectious Disease, who talk to us, then talk to the docs… (Get the drift?) it was decided to do an ultrasound on her abdomen. Surprisingly though, the ultrasound showed no fluid in her belly, even though it was 38cm around, red and shiny with broken capillaries. The only real puzzling part was around her right kidney was a small pocket of fluid just hanging out. The mystery continued…
After a full day of playing the guessing game and doctors, surgeons and Infectious Disease all scratching their heads (then using more hand sanitizer), on Thursday, June 13th at 9:30pm one of her surgeons left a banquet to come here and tell us that the only option that everyone agreed on was exploratory surgery.
On Friday, June 14th at 2:30pm, my little angel was taken into her second surgery at just 15 days old.
After 3 hours, the surgeon came out and told us that she did great! I was finally able to exhale the breath I’d been holding… While they didn’t find an immediate answer, this is what they saw:
*the moment they entered her abdomen, the same fluid that was in her chest came out.
* they took her bowel out and looked it over thoughly and it looked great.
*all other organs looked great, including her pancreas, liver, stomach, appendix, etc.
*her patch looked great as well (that was a big concern since it is a foreign body)
*the fluid around her right kidney looked somewhat familiar.
After calling in two other doctors to take a look, here is their hypothesis:
She has a PICC line that enters into her left foot and has been there since her second day in the nicu. Through that picc line is where her lipids (her fat for nutrition), her daily calories, and meds are delivered to her. The thought is that her line has been “off center” and has been depositing these important fluids around her kidney. So another drainage tube has been placed in the right lower abdominal space and is taking out the fluid around her right kidney.
While not many have seen this before, one of the doctors that had been called in had seen this before. A lot of samples were taken and we are still awaiting results from that.
Update: while writing this she had an x-ray done in which a dye was sent into her existing picc line and through the image we were able to see the fluid reach the kidney area and branch out like a star which has pretty much confirmed it! Yay!
Next steps:
Set a new picc line, start her meds and nutrition again and start healing those lungs so we can go home! Your prayers have been felt and we are so grateful for every one of you! May we continue this journey as planned and welcome our baby girl home!

Day 11

If I ever decide to play the stock market I am investing in Dansko shoes. Almost every nurse, doc and employee here wears them. At one of the many jobs that I’ve had one of the employees wore them and I loved the look of them so I spent close to $100 and purchased a pair. However, I am naturally 6’0 tall and if anyone knows these shoes they know that they are a good 1.5 inches in the heel. So, almost every time I wore them, I felt even more like a giant and would twist my ankle. So, the moral of my story is this: if anyone is interested, I have a solid black pair of barely worn Dansko’s to sell really cheap 🙂 
One of the receptionists to the NICU talked to us late one night about lotions. I recently found out that there is more to Johnson and Johnson baby lotion that meets the eye and apparently other lotions aren’t that safe as well. Did you know that there is a sunburn warning on the back of Eucerin lotion? Apparently up to a week after you use it you are advised to wear sunscreen and limit sun exposure! It says so on the back of the bottle!! What are we putting on/in our bodies? Check out this website: http://www.ewg.org/skindeep/ I have been glued to it!
My baby girl has had some “hiccups” lately. Not the cute diaphragm kind, the road bump kind. Two days ago she started spiking a slight fever. Protocol here is when babies under 30 days old get a temperature of 38 degrees celcius or higher, labs must be run. She had a blood analysis, a urine analysis and a lumbar puncture. She did great through all 3 procedures and they were sent off to the lab for both immediate tests and to try to grow cultures for 3 days. All of her immediate tests came back negative for infections but word is still out on the cultures. To be on the safe side, she was started on antibiotics last night as soon as the labs were drawn. So far today, her temp has stayed down and she’s been doing great. Another worry was that her abdomen with her new bowel placement was getting bigger. But, since this morning, her abdomen has started to go back to it’s regular size. I’m blaming gas… Please keep her in your thoughts and prayers that we can overcome this road bump and continue on our mission of going home!
Have I mentioned how much I LOVE the nursing staff here? Everyone has been great but the nurses have been phenomenal! They have started to include me in the daily care of her. In fact, I just changed her diaper ( which she HATES), I take her temperature and we got to lotion her today! Ted and I even get to hold her pretty much whenever we want. It does seem like a huge hassle for the nurses to get her out (it takes two of them to move her eight lb. body about three feet) but it is so worth it when she lays in our arms.
We can not thank you enough for all the love and support that has been flying our way. She’s not out of the woods yet but we are hopefully moving in the right direction. I am homesick beyond words and I miss my toddler immensely but I refuse to leave the hospital without her in my arms.

Day Eight

8 days. It has been 8 days since Fiona came into this world crying. It has been 8 days since our life stopped and we enclosed ourselves in a bubble of Children’s Hospital. It has been 8 days since I fell more in love with my daughter than I thought was possible. It has been 8 days since I’ve watched tv, eaten a fresh home cooked meal, and put my son down for a nap. It has 8 days yet it feels like 800. Our days consist of waking up in an rv, pumping, walking 7 minutes to get to the nicu, sitting by Fiona’s bedside and trying to get her to open her eyes and interact with us. Then, there is more pumping, then more watching, then walking to the rv and back to eat and then pump, and then we do that a few more times, then, we pump some more and then we do it all again the next day. In between all of that, I encourage Ted to run, he encourages me to walk and we encourage each other with our love. While this situation SUCKS, I wouldn’t want to do it with anyone else.

Fiona on the other hand, is doing great! She is doing so well in fact that I am getting nervous for something to hold us back. I hate to be a Debbie downer but CDH is awful and likes to play mean games… But, until then, I will gladly take everything wonderful that she is giving us.
Fiona is:
*about 7lbs. 10oz.
*off dopamine for low blood pressure and is doing fabulous!
*off morphine 100%! (They believe that it was causing her low blood pressure and low circulation in her feet and hands)
*not having any withdrawal symptoms from the constant drip of morphine she was getting. They have offered to give her a “quick fix” if she seems in pain but with all the watching that Ted and I do, she seems to be doing great.
*Wiggling her now pink toes and fingers! Her heart can have a hard time circulating blood to her fingers and toes but since the morphine vanished, so has the purple feet!
*Opening her eyes and looking at us (melts my heart every time!)
*without her arterial line (it was a line in her foot that plugged into an artery so that blood could easily drawn)
         -it was taken out because it collapsed. However, she is doing so well that blood doesn’t need to drawn as much so surgery said she can do without!
* officially has one hand and one foot free! It is so nice to touch my baby without having to worry about pulling something we shouldn’t

Like I mentioned, she is doing so great! My fear is getting my hopes up too much and something not happen like it should. I know that she is progressing nicely and we constantly tell the staff here that we are perfectly OK with slow progressioon. There is no need to rush. Slow and steady… Slow… And… Steady…

I’m still pumping! So much so that I have filled up my space in the freezer here so whatever I pump now has to be taken to our rv and placed in the freezer there. Then, when my parents come to see her, they will take some home and freeze it there. I treat it like liquid gold and when the lactation specialist brought up donating, I almost had a heart attack! I told her that it could be a possibility in the far future but I am too proud to let it go now. Plus, feeding and ventilator weaning is the next item on our To-Do list!

I have so much more to say but it is time to retire to the RV so we can video chat with our son. I would not miss that for anything! Thank you everyone for the prayers! Please know that they are felt and immensely appreciated! We’re not out of the woods yet so please keep them coming!

My baby girl

Spare time

Here I am again. Sitting in a cold nicu staring at my daughters puffy closed eyes and jumping every time she quietly sucks on her ventilator, flicks a leg or arm up, or wiggles her toes. We were told that they are slowly, but surely, trying to wean her off morphine and start to wake her up. That will be the first time I have seen her eyes since she was born.
We were told our time for rounds was 9:40am. Rounds is when the doctors, nurses, nutritionists, and everyone in between sit at a large table and discuss each patient. Every parent is welcome to join in on their child’s time and we have made it every morning except one. We are told her time for rounds each night but every time ends with an “ish.” Like, for today, her time is 9:40-ish. So here we sit, at 9:15am, waiting for someone to turn the corner and tell us it’s our turn. Most of it is medical talk between professionals that flies very far over our head. But then, when the foreign language is done, they turn to us and dumb it down. We are told what we need to know and then we are free to ask questions. A lot of it is the same as yesterdays, which is good, I guess. (Update: it’s 10:05 and we’re still waiting)
Ted and I spend a lot of time in her room. I have been pumping every three hours since we got here and up until yesterday, I have been pumping in one of two tiny rooms. Ted sits with me every time (except in the wee hours when I make him sleep) and he is my knight in shining armor. He cleans all of equipment! I want to cry with gratitude! My milk just came in on day 3 and it came in with a vegence! I was so engorged that it blocked ducts and prevented me from getting more than 1/2 an ounce on my left side. With the help of the fabulous lactation specialists and nurses here, I am now supplying about 8 oz. per pump! I was warned that since my supply isn’t being regulated by her, but by me, pretty soon I may supply enough to feed a small army. And guess what? I am a.o.k. with it! My pumping is one of the only ways that I feel I am helping her. I am not able to fight this fight for her but damn it, she will be well fed in battle!
A few days ago, I started pumping in her room. I sit in a chair in the corner and pump while she sleeps and I love it. It is as close to nursing her as I can get right now.
Update: as I am writing this, a surgeon came in and removed her chest tube! The tube was placed in right after surgery to carry the fluid that would fill in the space where her bowel used to be and where her left lung will be. They took it out in the room ( I looked away) and said that the site looks great and she is doing great! Go Fiona!!!!!!!!!!!!!

Surgery

At just 4days old, my baby girl has gone into surgery… It is such a surreal, out of body experience. I’m pretty sure I’m numb. She was wheeled away at 9:30pm and Ted and I were able to follow behind the train of anathesiologist as they pushed her out of her room, through the nicu and down a very, very, very long, somber, white hall. We knew this day was going to come, I just didn’t know it would be this soon. Birth and surgery always seemed so far away but here we are, putting the life of our daughter in the hands of medical professionals, when she should be at home with us, enjoying the sleepless nights and newborn smell. I know that this is one step closer to her coming home but it so hard to fathom that someone so young has to go through something so big. My heart aches for her and I can’t wait to walk into her room tonight and see here beautiful face and spirit…

My baby girl

It finally happened! She arrived! After being at the UW Medical Center for 48 (yes, 48!)hours and trying to get contractions going, she made her entrance after having my water broken and an epidural, after just 9 pushes 🙂 The best sound in the whole world happened as she cried as she was placed on my chest! For a baby with a LCDH this is great news! Our fabulous doctor was there as soon as she came out and immediately placed her on my chest for close to a full minute. She was then quickly taken away while the doctors did the nasty job of what comes after birth (I’ll leave the details out…) Fiona was then taken out of the room with my husband following closely behind her. I was able to continue the after care while she had her breathing tube placed and then she came back in. I can not, and will not, ever be able to describe the emotions I had in that moment. Seeing her brought me so many thoughts and prayers. It was something I will never forget. She and Ted then left for the nicu and I started cleaning up. The best part came about an hour later when the transport team to Children’s decided that she was well enough to come see me again! I truly reached cloud nine

I was able to be discharged and at Children’s about 30 minutes after her. Ted and I found the cafeteria as her team was still trying to set her up and make her comfortable. We were able to go back in for a few minutes before bed but all three of us needed our rest.

Here is what is going on with Fiona:
*x-ray has shown us that her heart is to the right
*bowel takes up her left side and stomach is right in the middle
*her right lung is shown in the x-ray below her heart, which I would like to assume means that it starts above the heart and ends below
*her blood pressure is a bit low but is being moderated with Dopamine
*she is on a respirator but it is set really low
*because of her organs not being in the “correct” place her central line couldn’t go through her umbilical cord, like they would have hoped, so it is in her foot instead.
*we get compliments every time we see her about how beautiful she is, how her head is so round and smooth and her two adorable feet and ten perfect toes.

She gets the hiccups often which are adorable

Here at Children’s Ted and I have been shown just how kind the human spirit can be. When asked if people are naturally good or evil we have been shown that people are good. The staff of doctors, nurses, and everyone else here has made our experience here one that we hope to never forget.

I also want to say thank you to everyone that has given support on this journey. We are still trying to figure out our schedule with pumping breast milk, sleep, eat and the nicu but we see and feel all the love on Facebook, email and texts and we could not be more appreciative. Thank you from the bottom of our hearts.

P.s. As soon as I figure out how, I’ll post pictures!