The Price I Paid for my Baby Girl

[atomic sagebrush]

Oh what a little snugglebug!! how precious!!!

[Mrs_Incredible]

She is so precious and utterly gorgeous, what a smile!! Xx

[retialla]

Hi Ladies - It has been a long time since I have updated on my daughter. She just turned one at the very end of 2015. Right now her adjusted age is 9 months and she is meeting all of her developmental milestones for the most part. She has been crawling for the past 2 months. She keeps me pretty busy as she has lots of doctor appointments and also therapies (occupational and speech) three times a week.

Her weight gain is okay, she now weighs 15 lbs, 10 oz and her doctor was happy to tell me she is finally on a growth curve for her actual age (1 year) even though it's just like the 3rd percentile. She is a small baby regardless. She loves solid food and wants to eat everything we are eating. Out of all my babies, she shows the most love of solid food at this age. So we are hoping as she takes in more solids and less formula, she will no longer need night tube feedings and hopefully can get rid of her g button.

Unfortunately, in mid-December she was hit very hard with severe bronchiolitis, an infection that affects the small airways of the lungs, usually caused by viruses like RSV. She became very ill and had to be hospitalized. She spent a week in the PICU and had to be put back on the ventilator for 4 days. It was very hard to relive that experience since she spent so long on a ventilator in the NICU. They could not keep her comfortable or sedated at all. They had her paralyzed for the first few days and once they stopped the paralytic, they realized she had not been sedated properly. So she was awake with a breathing tube down her throat and paralyzed for about 2 days. After that, even with 4 different drips and lots of "boluses", they could not keep her sedated. It was hard. My husband and I took turns staying with her, since one of us had to be with the boys, but one of us was always there at her side. They took great care of her there!

She made it through and bounced back quickly. I had to take her home on a methadone wean (ugh) but she did get her first tooth at the hospital! We saw it for the first time when they removed the breathing tube. Unfortunately, this hospitalization really negatively affected her sense of security. She wants to be held a lot more. She has pretty strong stranger anxiety although she does warm up to people after awhile. We learned how poor her lungs really are and how little reserve she has. Her pulmonologist (lung doctor) says she has to make it through this winter, but next winter she should be much stronger.

After she came home from the hospital, she would no longer sleep in her own bed and frequently wakes up at night, crying in terror and otherwise is just very restless. She failed her sleep study in November so we still need oxygen at night. It is not easy co-sleeping with an infant on oxygen, a monitor, and tube feedings.

Because of her very poor lungs and what happened in December, she is now totally grounded for the whole winter. I don't take her anywhere, except to doctor appointments and sometimes the park since we're having a warm winter. Her brothers still bring all kinds of junk home from school though! I've basically put my career on hold to take care of her right now because I know how much she needs her mama. I wish we could go places though.

Anyway, her list of diagnoses are currently: bronchopulmonary dysplasia (chronic lung disease of prematurity), RAD/asthma, central sleep apnea, oropharyngeal dysphagia (swallowing difficulty), feeding difficulties, GERD (reflux) - hoping she can outgrow all of these! She's such an amazing, tenacious child with a crazy will to survive despite the odds.

Here are some pictures:

On the ventilator AGAIN:


In the hospital:


First birthday


First Christmas


At the park




Playing:




With her brothers


Baby in a bucket

[purple]

She is a cutie and so are your boys

Sorry you have had such a tough time, the hospitalisation sounds like a very traumatic experience. I hope she can stay healthy and away from hospital now.

[maidentomother]

You have beautiful children! I pray your DD's health improves, I can SEE that she is a fighter and I really think she will overcome these obstacles.

[kitkat18]

Gosh my heart goes out to you, your family and your little girl! Thanks so much for the update and pics she sure does look like a fighter! Its wonderful to see her looking just like a happy healthy one year old after her rough start. Sending positive energy that she has an illness free rest of your winter Xxx

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[retialla]

Thank you ladies, 2015 was a truly awful year all around for our family health-wise, but hoping 2016 will be better! A lot of these babies never make it out of the NICU and it is heartbreaking, so we are very lucky. But I feel like a lot of the stories you hear about such tiny babies that survived make it seem like they grow up and are perfectly healthy, and that's not always the case. Far from it. Some of the effects aren't even seen until they're older (like learning disabilities, ADHD, etc.) Her doctors/therapists think she is doing great overall for being a 24 weeker, so that is nice to hear. Only time will tell what will happen but I'll never regret our decision to intervene and give her a chance. she is very happy to be here despite everything she has been through! GD is the only public place on the internet I've really shared her story and pictures like this because it is such a wonderful, welcoming place!

[TaytumJ]

Oh my word - that pic of her at Christmas!! She's absolutely beautiful (as are your boys!). Praying 2016 is an immensely healthy year for you guys - what a little fighter!


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[Dreamsister]

What a story. Thanks for sharing. You are so brave. Bless you and your little miracle.


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[fknonl1ne]

Wow!! She's beautiful!! She's a fighter and sounds like she has a matching mama to fight for and with her. Keep up the courage, girl. Much grace to you. I pray 2016 brings much joy and rewards to erase the pains of 2015