Oh where do I begin? SO many people have asked me about Addie’s story, but I’ve been neglecting to take the time to write it all out because it’s so long and it’s ever-changing. I know it’s long, but if you really want to get to know our girl, this is her full story (for the most part).
When Mathew and I went for our 18 week anatomy scan at my OBGYN they noticed something was different during the appointment. We had just found out Addie was a girl, but that she had some sort of physical abnormality. We were sent to a maternal fetal medicine doctor who determined Addie had a sacrococcygeal teratoma (basically a tumor on her bottom). We also had genetic testing done through an amniocentesis and found out that Addie has an imbalanced translocation with her chromosomes. One of her chromosome strands from 1 and one of the strands from 5 were swapped with each other, and she had more of chromosome 1 and less of chromosome 5 than a typical person. What that meant for Addie- we honestly had no idea. With scans every other week, appointments and MRIs in Houston at Texas Childrens, and more, it was a rough pregnancy- yet I loved every minute of it.
Our doctor told me that Addie would need to go to the NICU straight after being born until it would be time to have surgery to remove her SCT. He also told me because of my pre-eclampsia and cholestasis that I would need to deliver at 36 weeks. Of course, Addie had other plans and came a few days before my scheduled c-section- August 26, 2014 at 5:48 am at 5 lbs 11 oz and 18 inches long…and she wasn’t screaming at the top of her lungs. I was so worried but thought maybe they had been so quick to take her that I hadn’t realized she cried.
Once we got to see her, she had a nasal cannula because she was having breathing difficulties- something I never imagined she would have. Tests would also reveal later that she had a PDA (a hole in her heart) that would need fixing. So instead of one surgery, we realized Addie would also need heart surgery.
Within her first 2 weeks of life, Addie had surgery to fix her PDA as well as surgery to remove her teratoma. After each surgery we realized what a fighter we had! She was so strong and resilient! During this time, Addie was also intubated. She needed a breathing tube down her mouth to provide oxygen to her because she had breathing problems that we couldn’t figure out. After several months of being intubated and not being able to extubate, the discussion came that Addie would need a trach.
We fought so hard and had many tears over her breathing issues because getting a trach would mean another 2 surgeries- one for her trach and another to have a g-button because trach babies usually can’t eat by mouth. We always knew that Addie would get anything she needed medically, and we knew she needed her trach, so in November she had her 3rd and 4th surgeries.
After a few weeks with her trach, Addie started taking milk from a bottle after lots of research on my part and a swallow study. It was such a huge milestone for her! I love being able to feed her and I know she enjoys her milk so much.
In December we were told we needed to go to Texas Childrens Hospital in Houston (4 hours away) because Addie needed a procedure for her heart. She has pulmonary valve stenosis and needed a cath in order to help open the valve. Addie and I got to fly by helicopter while Mathew drove there with my mom. Addie stayed 9 days even though this was supposed to be a procedure mostly done outpatient where patients could go home the next day. It was horrible. Mathew saved Addie from dying once because we had neglectful nurses. We couldn’t hurry fast enough to get back to Temple so Addie could be home for Christmas, and she never had her procedure because she got sick while she was there. We were so lucky to be able to spend Christmas, New Years, and Valentines at our local hospital with Addie and our favorite nurses. Addie was trucking along doing really well, but was having these random spells where she couldn’t breathe. No one could figure out why they were happening, and for a while they stopped. We figured that we had Addie all figured out- but we didn’t. Not only that, but Addie had a brain bleed from some blood thinners and fluid on her ventricles that caused her to have hydrocephalus. February 2nd she had her 5th surgery- a craniotomy to remove the blood and fluid, and some complications with her drain had her back in the OR a few days later for her 6th surgery. 
Craniotomies are scary and messing with the brain can have a lot of consequences. Addie had several seizures and seeing them was one of the hardest things I’ve ever had to endure. She’s now on seizure medication, but we haven’t seen any seizures since February, so I’m hoping that is all behind us. At the end of February, with just 6 days until her 6 month birthday, Addie came home after 181 days in the NICU. It. Was. Glorious. We played and played until we couldn’t play anymore. Except… Addie was still having those spells and they kept happening and happening. Anytime she would cry they would happen. Our home nurses weren’t showing up for their shifts as well, so Addie could feel our stress. After 6 days at home, we asked our Neonatologist if we should take Addie in to the hospital and she said yes. 
Thus began our PICU journey. We have been in the PICU almost 2 months and Addie is now 8 months old. During our stay we have found the cause of Addie’s breathing issues- bronchial malacia (floppiness of the bronchial tubes). Her bronchial tubes can spasm and close when she gets upset, making it difficult for the ventilator she’s on to give her breaths. However, we have been able to adjust her ventilator to the proper numbers and she is doing wonderfully!
So there you have it. Addie’s story (for the most part). She’s a crazy girl that loves to live life on the edge. We love her to bits and know God is using her for His glory. Sure, it’s not always easy or fun, but we know one day we will look back on it as our growing time. God is good all the time, and all the time God is good!
Stephanie you, Matthew and Addie are all warriors! Your strength and continued positive attitude along with great faith and our glorious God by your side is so inspiring! Addie is a beautiful baby girl that is changing lives even though she’s too young to know it. God’s got her story written and it’s just beginning. I love seeing all your Instagram posts as they brighten my day each time I see them. You are a wonderful mother and so selfless- what every mother envies! Praying without ceasing for you, Matthew and Pink Ninja Addie!!
Addie is so lucky to have you and Matthew as parents! She is such a beautiful little girl. Praying that Addie comes home soon! if there’s ever anything we can do, please post about it. I would love to help in anyway.
Every time I see Addie’s picture in my news feed I stop and read to see how she is doing each day. On her good days where she is smiling she makes me smile and on her not so good days I ask God to make her feel better and I send out virtual hugs and kisses. You guys are so strong, but so gentle and kind. You have the biggest hearts and in every photo you can feel the love that the three of you share and the love that your family shares with you. Thank you for letting us into your world and for sharing the love <3 Love you to pieces!! xoxo
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Addie, my family just loves to hear about you and we pray everyday for you to go home. This has been a journey that you let us come along. Your mommy and Daddy love you so much. we love to see that smile. Thank you again and we love seeing your darling little girl everyday!! xoxo
I’ve only just started following your journey and as a mother myself you are a true inspiration, your baby girl is so strong and beautiful and wishing you all so so well. Sending all my love and prayers from England xxxxx
i always follow your story guys, stay blessed am so much in luv with little Addie
Addie is such a strong little girl, and you and Mathew are strong and wonderful parents! I truly hope Addie will be coming home again soon. Sending hugs and warm wishes your way today and always!
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You are both just the best parents, and Addie is the cutest, strongest baby ever. <3
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Thank you so much for sharing your story! I go to church with Barbara Parish and have been praying for your family since Addie arrived. We also have a daughter – now 23! – who has had complex health problems over the years so I very much understand what you are going through. And I also now how comforting it is to know that others are praying for you when you are too exhausted to even pray. And while I wouldn’t have asked for all that happened to our family, neither would I trade all that we have learned about God’s faithfulness in the process. I can tell by your posts that you are wonderful dedicated parents and Addie is so blessed to have you. Just take one day at a time and look for God’s hand at work in every situation. He will never leave you…
You and your husband are both so amazing, all you have sacrificed, all you give, your true love and especially your faith that continues strong through all of this. She is truly loved and truly amazing.
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Thank you for sharing your story. Arlene keeps me posted when she can. Peyton, my granddaughter, was happy to sport her #pinkninja onesie. Your little Addie is just adorable. She is very lucky to have such special parents. I’m sure that’s why God gave her to you. Bless you and your family. Stay strong.
My little L was born the same day as your little lady. You are one strong momma! I hope and pray that your sweet girl continues to grow healthy and strong. My thoughts and prayers are with your family!
Thank you for sharing your story. Our little man was born on the same day as your Addie! And while it was not as long of a stay, George also spent some time in the NICU from being born early. We actually just got cleared in April for his PDA diagnosis. Nothing makes a momma’s heart stop faster than hearing there is something wrong with your little one’s heart. Our journeys may look very different, but I can sympathize with some of the feelings of the scariness that comes along with the NICU and the unknowns during this time. She is so lucky to have such sweet and positive parents as is evident in your posts. Just take it one day at a time and breathe in those sweet moments with Addison!
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Thank you for sharing her story. She’s too pretty in pink! I can’t imagine the perseverance and faith that goes into a long term hospital stay for your child and I will keep you all in my prayers! You have a terrific smile and it shines through all the pictures. Blessings and I hope she can head back home very soon!
I just spent the past hour reading Addie’s story and looking at the pictures. As a person with breathing problems, I’m humbled by her tough resilience. May God bless and be with the three of you, my prayers are with you all. I pray that baby Addie overcomes her problems, may she fully recover and get to go home soon.
God bless you and your family
I am a new follower to your blog…love it! Addie is absolutely beautiful.
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Heavenly Father in the Name of Jesus I pray for your healing touch upon Addie’s body. Lord give her Mom and Dad strength as they continue the journey of Addie’s progress of recovery. Lord May they feel Your Love and Presence surround them in a Mighty Way. Amen
Wow, I don’t know how you do it. By now you must already have a PHD on her condition and then some. You are both amazing parents, I pray that God gives you the strength to be champions for Addie now and in the future. I will put your family on our prayer chain at St Andrew Baptist.
Your story really reminds me of my own with my son Christian. At my 20 week ultrasound they told me he had no ambiguous genitalia clenched fists and shorted bones as well as fluid in his kidneys. They sent me to a perinatologist who then told me he probably had trisomy 18, which is not compatible with life. They recommended amnio, so we did it. His chromosome count was normal so we were relived, however the micro array analysis revealed a duplication on the FBN 1 gene on the 15th chromosome. The doctors had no idea what diagnosis or condition it could be. Amnio was able to tell me he was going to be a boy, but still no sure sign of boy parts. At my 30 week ultrasound they discovered he was filled with fluid all over his body. They told me I need to deliver within the hour or he would not make it. While I am lying in the bed ready for my section the neonatologist comes in to let me know only 1 out 3 babies survives with hydrous fetalisis ( fluid in the body). I finally burst into tears and was ready to deliver my baby. My little warrior survived delivery but had a long road ahead. He was intubated immediately and given high doses of blood pressure medication to keep him stable. He was also on an oscillator just to keep him alive. He was born at 30 weeks. He was given diaretics to help get the fluid off. It was touch and go for about 2 weeks and each day he was losing massive amounts of weight. We finally had some hope. After 1 month he was put on a regular ventilator and I was finally able to hold my baby. They tried extubating more times than I can count and one time he made it a week. After the last time they decided to trach him. It was devastating, so I understand your pain. But he needed it so we went ahead. He spent 4 months in the NICU and 3 months in the hospital at PCH all before being able to come home for the first time. I slept in a chair most nights by his bed because I didn’t trust that someone was watching him all the time.We had several scares during our hospital stay. Christian has had a total of 9 surgeries including open heart, lung, kidney, orthopedic, gtube, and hernia. He has now been home for 1 1/2 years and is making progress. He is still trached but can be off the vent for up to 12 hours. He still is gtube fed and can’t walk but is working on holding his head sitting and rolling. He has an unknown skeletal dysplasia. He has dislocated hips and clubbed feet that were casted. He also has cystic kidneys and a cleft palate, a trach and gtube. He is my little warrior he fights every day and still continues to smile and dance. He loves baby Einstein. I feel blessed to have him in my life. Every day is difficult and I continually wish that he would be able to do the same things as other kids his age. I feel blessed to have a wonderful husband and family to support me and my son in his journey. I enjoyed reading your story as sometimes I feel I am the only one with this experience but I know there are many other moms out there that have had similar experiences. I wish you and your daughter the best and will continue to pray for her.
You have such courage and strength. I’m amazed by your story. We had a similar first experience but no where near so difficult in the long haul. Our Soraya somehow got septic shock in the womb. I delivered at 36 weeks, with a recent onset pre-eclampsia, by emergency C-section. Soraya couldn’t get oxygen to her belly, and they thought that she just had a twisted intestine. She was purple from lack of oxygen and they intubated her immediately. I waited and waited and finally was able to see her 7 hours after her birth when she was in an isolette, prepped to be air-lifted to Denver Children’s Hospital. I had precious little time with my baby, and the two days I had to stay in Pueblo were an eternity. Finally, they let me leave and my parents drove me to Denver to be with my husband and daughter. Soraya was in the most critical unit of the NICU. Later, the doctors told me that they came in the morning after her arrival and asked if she was still alive. That’s how bad she was, but God performed a miracle. She was given tons of antibiotics, was on high oxygen oscillator, and had five blood plasma transfusions. She had to have a spinal tap to test for meningitis. It came back negative. In fact, every test came back negative, and though she presented with all of the symptoms of septic shock, we never knew for sure that it was actually septic shock. After she improved, they thought she would be there for at least six weeks, but we went home after three. We had people across the country praying for us. We also used some essential oils aromatically for her to breathe in. God is good all the time and all the time God is good. I wish I had known about the healing properties of linen at the time, but I’m passing this link onto you: http://www.lifegivinglinen.com/linen-study.html
God knows better than we do. He made this Earth with healing properties for us. Anything and everything we can do to heal our babies is a Godsend. May God bless you all richly!