After a long five month wait, Addison had her hip surgery this morning (Thursday the 21st). Thanks to the many, many abdominal x-rays she had in March due to her feeding tube issues, we found out that her hips were dislocated. We had known for quite some time that she was at risk for this due to her increased muscle tone. She had her first appointment with the orthopedic surgeon in April. After a lengthy discussion with him, and a couple of her other doctors, we decided to go ahead and schedule surgery. We felt that it was definitely worth it to be aggressive. Leaving her hips dislocated could have potentially caused more problems down the road (such as problems with her spine and reduced cartilage in her hip joints – which would have made fixing the problem in the future impossible).
Both of Addison’s hips needed to be relocated. We were very fortunate because she ended up requiring the less involved procedure. Basically, the surgeon only had to adjust the femur to get her hips in proper position, and did not have to do a larger incision to get to her pelvic bones. This also meant that she did not have to have a lower body cast, which definitely makes our lives and her recovery much easier. They lengthened some of her groin muscles so that they don’t pull on her hips.
Surgery itself went well, it only took about three hours (she was orignally scheduled to take about five). She was able to come off the ventilator in the recovery room. She still ended up in the PICU, because it is her home away from home. Seriously though, she has an epidural to help control her pain and with her history of breathing issues, we all figured it would be the safest place for her. She has been fairly stable after surgery. She was originally on plain oxygen, but was having some troubles with airway obstruction and apnea and after trying a few other things, she ended up on the trusty vapotherm. She has a PCA pump in addition to the epidural. She pooped all over herself at the end of surgery, so she’s getting some antibiotics just in case. Addison decided she needed to add a drug allergy to her health history, so right after they hung clindamycin, she broke out in a rash. She earned herself a hefty dose of benadryl and a steroid. She definitely doesn’t like being bothered, but she’s at least fairly comfortable. It was a pretty eventful 3-4 hours after she arrived in PICU, but hopefully she will have an uneventful night as it seems she has finally settled down a bit. Violet and Oriana had a fun day with Grandma and their first demand when we video called was to see Addison. Their biggest concern throughout our discussions about Addison’s surgery has been confirming that we will bring them to visit her. We have, of course, reassured them that we will do so and that they can see her on a video call every day. It’s been a long day, so I’m off to see what sleep I can get on the lovely couch in Addison’s room.
I have been thinking a lot about Addison and how far she has come this past week. The month of October always makes me think about our little peanut and all she has been through. Two years ago, she was extremely ill and was transferred to Akron Children’s from the NICU at Aultman. In some ways, it has been a very long two years. She has been through so much since she was born and I am so proud of her and all the progress she has made. She’s a little fighter and she just keeps powering through everything that life throws at her. As I sit at her bedside typing this during yet another hospital stay for respiratory problems, I am just amazed by this girl. This is day number three of her not feeling well (wheezing, coughing, labored breathing, etc). We came to the ER at 7 pm Thursday and she didn’t get settled and get to go to sleep until midnight. She missed a feeding; her meds were way overdue. Between 7:30 am and noon Friday, she had projectile vomited, been deep suctioned twice, assessed at least a dozen different times by doctors and nurses, given a breathing treatment and inhaler, and just generally irritated and not left alone, and yet she was still smiling at me. She has always been such a sweetheart.
Addison was transferred to Akron Children’s on October 6, 2014. That day (and the surrounding days) were some of the worst days of my life. I can honestly say, I have never been so terrified as I was during that time period. Addi was so sick and my heart just dropped to my feet the moment NEC was mentioned. Knowing your child’s life is in danger is the worst feeling; there are no words to describe how that makes you feel. I don’t think it even fully hit me how terrified I was and how very ill she was until after her surgery. I remember the surgeon coming to talk to us about the surgery and he walked us down to the NICU so that we could see her. They were still getting her settled so he left us in the hallway to go check on her and see if they were ready for us, and I remember I completely lost it at that point. I just started crying hysterically. I was so relieved that she made it through the surgery and he was able to find and correct the problem. In that moment, the switch flipped and all those emotions I had been holding back came rushing in. It was a long eight weeks after surgery until she could go back and have her ileostomy reversed. She struggled with feeds and dumping all her nutrition out through her ileostomy. The ileostomy constantly leaked; it was impossible to keep a good seal around the bag. She went through morphine withdrawal. We all made it through and she learned to take bottles very quickly. Of course, being so premature and so ill did not leave her unscarred. She’s made it through it all like a champ though. She has always been a happy, content baby. The only time she cried a lot was when she had undiagnosed seizures. She’s taken it all in stride: vomiting, surgeries, NG tubes, radiology tests, bloodwork, muscle spasms, physical therapy, occupational therapy, seizures, and hospital stays. This girl has to work so hard for simple little things like holding her head up and standing. Every little grin she wears makes my heart so happy. I am so proud of her and how far she has come in two years. Two years ago she was on the ventilator, in an isolette, trying to recover from her first surgery and having a rough time of it. While we are in the hospital yet again two years later, she is in a big girl crib and cooing and smiling at me and just generally being adorable and getting all the nurses to love on her. She can hold her head up so well lately. She can stand with her leg braces on in a stander and she can take baby steps in a gait trainer. She loves doing speech therapy and getting tiny little tastes of different things. She makes eye contact and loves watching her sisters. These may seem like such little things, but for her, they are huge steps. She just keeps going and trying and smiling. All our girls are miracle babies and I’m so incredibly proud of them. Addison has just had an unfairly difficult life thus far, and I hope it keeps getting better for her. I hope that in two more years, I will be able to look back and see an incredible amount of progress again. I’m incredibly grateful that she has been able to overcome so much. I’m thrilled that this was a short hospital stay and that I get to take her home today so that we can feel like a family again. Mommy loves you Peanut.