She’s a Fighter

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.

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Addison after her first surgery two years ago. She looks so awful.

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Addison during this hospital stay.

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Weekly Update (August 24-30)

As you know, Addison was admitted to Akron Children’s on Wednesday, August 26. Her GI doctor admitted her so that she could have an NG tube placed (a tube that goes into her nose and down to her stomach), we could get the education we needed to take care of the tube at home, and get set up with all the supplies we will need. The plan is for her to have the NG for a couple of months, and if all goes well, she will then have surgery to get a G-tube placed. She will likely have the NG until November. She also got her upper GI series x-rays done, so that we didn’t have to do them as an outpatient. They were normal (yay!). The poor girl got her 12 month shots on Tuesday and then got admitted on Wednesday. She was understandably exhausted and irritable. I think I held her for a good 9-10 hours on Wednesday; we got lots of cuddle time in. Addison did well in the hospital. At first, her tube feeds were done by gravity, but she threw up Wednesday night and Thursday morning, so the doctor decided to do her feeds on a pump, so that we could better control how long it takes them to infuse. Addison is supposed to eat 100 mL of formula 5 times a day (about 17 ounces). She also gets 100 mL of water each day through her tube. We give her about 20 minutes to eat whatever she can or will from a bottle, then whatever is left of the 100 mL goes into her NG tube. She has tolerated everything very well since we switched to the pump. We follow up with the GI doctor at the beginning of November and in the meantime, we will continue to see a dietician to make sure her calorie and fluid needs are being met. We were discharged on Friday afternoon. I had not seen Violet or Oriana since Wednesday morning and Ryan had not seen them since Tuesday night. We missed those goofy little girls. I am just so thankful that we have gotten this whole process started, after fighting for something to be done for so long.

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Addison sleeping in my pull-out bed. Apparently it was better than her crib.
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We did lots of cuddling.
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Seriously, how cute is this kid?!?

This week was another tiring one for me. I spent Wednesday night and all day Thursday at the hospital. I came home Thursday night to shower and sleep and was back at the hospital by 7:30 Friday morning. I had some very serious struggles with overwhelming anxiety for a few days. Apparently, having one of the girls back in the hospital bothered me more than I thought it would. I especially feel like the NG tube and tube feedings gave me flashbacks to when the girls were in the NICU. I spent a lot of time holding Addison while she was getting her tube feeds this week, and I always held the girls while they were being fed in the NICU. It was completely overpowering anxiety. I had no idea it would affect me so much. There has been research done that shows that parents with babies who spent time in the NICU are at risk for PTSD. I can definitely say I have a personal understanding of how that is entirely possible. Because I like to provide education links, here are some on PTSD in parents whose children spent time in the NICU:

http://nyti.ms/1hqCitA

http://handtohold.org/resources/helpful-articles/understanding-ptsd-when-the-stress-of-the-nicu-persists/

As I mentioned, the girls had their 12 month checkups with the pediatrician. They are all doing well. She feels that Addison is functioning at a 3-4 month developmental level, and Violet and Oriana are right around 9 months (which is their corrected age, so that’s awesome). Heights and weights were:

Addison: 27 inches and 15 pounds 5 ounces

Violet: 28 inches and 18 pounds 13 ounces

Oriana: 27.5 inches and 18 pounds 7 ounces

We are looking forward to getting back into a routine and figuring out what the heck we are doing! All this medical equipment makes me feel like I am at work! However, I am thankful that my nursing experience has given me the knowledge and experience to deal with Addison’s NG tube and tube feeding. It is stressing me out and I have done these things many times before, so I can only imagine how a parent with no medical background would feel. As usual, this next week looks like it is going to be a bit hectic too. I have myself scheduled for 20 hours at work (hopefully I’ll get to work most of them), Violet and Oriana have an appointment at the NICU follow-up clinic, and Addison has PT and her OT evaluation. Welcome, September. Let’s see what craziness you have in store for us!

P.S. – Here’s a couple of videos for you!

Violet giggling because Oriana is touching her and Oriana just being a general ham. (Addison let’s out a good coo in the middle too):

Oriana waving things around and making noise. She does this all the time:

26 Weeks

Our girls were born at 26 weeks (and 6 days!) gestation. (I was really hoping to make it to 30 weeks, but they had other plans). I posted this picture on my facebook, but I wanted to put it here too, just to help people understand a little bit about what it is like to have a baby born that premature. Every word of this is very true. Reading it takes me back to when our girls were born and how they responded to stimuli, how tiny they were, and how much medical equipment/attention they needed. When I think back to when they were born, it is incredible to me that they are almost a year old and are getting so big and doing so much! We had the amazing opportunity to watch our babies grow and develop outside the womb. It has been awesome to watch them come so far. I will never forget our experiences in the NICU. It was terrifying, stressful, exhausting, and amazing all at the same time.

You can find Peek A Boo ICU on facebook or at http://www.peekabooicu.net/

They have tons of great information about preemies and the NICU and it’s a great place to find support.