Oh what a little snugglebug!! how precious!!!
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Oh what a little snugglebug!! how precious!!!
She is so precious and utterly gorgeous, what a smile!! Xx
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. :crawl: 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. :fingers:
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:
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In the hospital:
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First birthday
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First Christmas
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At the park
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Playing:
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With her brothers
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Baby in a bucket
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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.
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.
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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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 :Angel: 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! :HH::awe::HH:
Oh my word - that pic of her at Christmas!! [emoji7][emoji7]She's absolutely beautiful (as are your boys!). Praying 2016 is an immensely healthy year for you guys - what a little fighter! [emoji177][emoji177]
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What a story. Thanks for sharing. You are so brave. Bless you and your little miracle.
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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
Thanks for sharing. You have had a tough year. Hang in there, keep fighting for her. She was meant to be, and she is a tough little girl. I have a friend who had her DD at 25 weeks. She is now 8 and taller than her brother who is 9. Does everything normally. I pray you get to that point and it gets easier. Your boys are adorable, she is a lucky little girl to have 2 big brothers.
What an amazing story and special little girl! I hope her health continues to improve xx
Thank you for sharing your story, I hope and pray that this winter ends SOON and your gorgeous girl keeps growing stronger and stronger. :heart:
Well, I'll update again in case anyone is still interested. My daughter is now 18 months actual/14 months adjusted. We had a very challenging and exhausting winter where she was hit by respiratory infection after respiratory infection - every 3 to 4 weeks she would get sick and it would often go into the lungs and become bronchiolitis. And this winter is not like a typical winter, basically for the entire school year she is sick. When she's sick it's not like a typical baby, rather it requires a boatload of interventions to keep her out of the hospital - oxygen, 'round the clock breathing treatments, oral steroids, home suction, etc. It has been exhausting to say the least. I was able to keep her out of the hospital since December, but then she got too sick again in May and had to go back to the hospital, this time only for 2 days luckily. I have learned the hard way, so I know exactly when all my home interventions aren't enough and I need to take her in.
Otherwise, I finally took her off all supplementary oxygen once she recovered from her May infection. Mostly because she wouldn't keep the cannula on anyway and always pulled it off every night, so there was no point in even trying. She is still getting Speech Therapy twice a week and sees a nutritionist once a month. I finally got her off night tube feedings as well, but she only weighs 19 lbs and may have lost some since I stopped them, so I don't know what the next step is. We have tried an appetite stimulant but it was causing hyperactivity and behavioral issues so I didn't want to restart it, but we may have to try it again if she loses weight.
She and her brother both got the same surgeries, adenoids removed and ear tubes last week and it went great. Hopefully no more ear infections! But she is still a terrible sleeper and will last maybe 1 hour in her bed before coming to ours. And she tosses and turns all night and is so agitated. I don't know how to help her and it's very frustrating.
Anyway, on a positive note she is meeting all of her other milestones. Started walking at 12 months adjusted. Climbing and getting into everything, just like a typical toddler. She has maybe 15 words and some 2 word phrases like "thank you." I'd say she is different than my boys at this age in that she is so much more intuitive, social, and sensitive. She also has a favorite stuffed animal (they have never been attached to anything in particular) and gives lots of kisses. She is a much better mimic and more talkative than they were as young toddlers. It's interesting to see the differences. And she just loves her big brothers.
And we are expecting baby #4! I decided I wanted one more and DH was just along for the the ride. I thought it might take more time to conceive now that I'm in my 30s, but it happened right away. I am 25 weeks and there are zero problems with my pregnancy and I'm not really at any higher risk of another preemie than anyone else. I quit my strenuous job and work an easier, non-labor intensive one for the meantime. I am able to work out and be active. We decided to not find out the gender of this one, not even the doctor knows! The sonographer checked (I made DH leave the room so he wouldn't cheat and peek) and confirmed the baby looked like a normal girl/boy but didn't put it the report and told me she herself would forget within 30 minutes. So no one really knows! But I'm going to guess another boy. Always thought I'd have 3 boys. Still think I'm a boy mom. Another girl would be nice though, I think my daughter would like having a sister.
I have to deliver at 37 weeks so not too much longer until we find out. I don't really have a preference either way as I've been very lucky. I just want a healthy, full term baby. And this is our last baby and I'm so ready to have my body back and get my career back on track!
Here are some random photos:
Getting surgery with big brother.
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First summer in the pool!
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Giving Kitty water.
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Too healthy to be in the hospital!
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So happy to hear she is doing good. I'm assuming she had reflux and I know a ton of other things. Is she still on reflux meds? If not maybe start them up again and see if it helps her night time sleeping and recurring infections. I know it sounds strange but usually always related to reflux.
Congrats on your pregnancy. Hope everything goes perfect with your delivery.
Amazing story. Glad to hear u got a happy ending. Your daughter is just adorable. Fantastic update too. All the best for u and ur family xxx
Your daughter is gorgeous and a real little fighter for life :), wishing u everything of the best for your new bundle of joy when he or she arrives.
Glad she's doing well! Don't chalk up all those differences to sex, though, please. My boys were both early talkers and very sociable. There are plenty of empathetic men and unempathetic women. She's definitely a cutie--enjoy!
Thank you for the update; what a cutie pie your little girl is! :)
Congrats on your pregnancy as well!! X
What a sweetheart!! Wishing you the best in everything and that this is the end of the hard times. :heart:
She's so adorable!! She looks happy and her giving kitty water is the sweetest![emoji171]
Congrats on your pregnancy and I'll be anxious to know if it's a boy or a girl!
I remember your courageous story and daughter! Thanks for updating us. Huge congrats on the new one coming. We'll be eager to know boy or girl. Something tells me it's a girl and I've been known to be both right and wrong before😀.
Here is to wish you a smooth sailing pregnancy!!
This story and thread is so incredible. Your daughter is so cute! I'm wishing you a healthy and peaceful "team green" pregnancy.
Your daughter looks so cute and with a twingle in her eyes. Huge congrats with your new baby.
DS1 (9) ❤️ DS2 (8) [emoji173] DS3 (5) ❤️ DW (41) [emoji1326] DH (38) [emoji144] TTC'ing pink from May 2016
She's beautiful congratulations! What a trooper she is!! Xx
She is absolutely amazing! What a miracle! Wishing you all the best for your new baby :-)
I love this place even though I don't visit as often as I would like! It's the only place online I really feel comfortable sharing her story. She is still doing well, perhaps it is because her brothers have been out of school all summer. We have been respiratory illness free for over 4 months now! It has been wonderful, but school is back in full swing so it's just a matter of time. She is much stronger at the start of this sick season though.
We have been off tube feedings since June and had a few months of stall in weight gain but last month she finally gained! So hoping the trend will continue but still probably isn't eating enough compared to her insane activity level.
I was lucky this time, had a good, uneventful and complication-free pregnancy. I was able to keep active after my kids and work out up until the day before my delivery. Had to deliver 3 weeks early but the experience was like night and day. Of course, I would have preferred a VBAC but there are no OBs around here that would support that. Still a scheduled term c-section is like Disneyland compared to the nightmare at 24 weeks.
It was so worth it to wait. I was convinced boy and had my name set and everything. My husband refused to entertain the thought of another boy and insisted it was a girl. My mom wanted another girl. We were very strict about not finding out despite having like 5 ultrasounds... I was very proud of DH for being able to wait! Never it a million years did I think he would be patient enough. He was only able to attend the 20 week scan though and I made him leave the room when the tech checked so there was no way he could peek! We had our one year old there anyway so he was busy wrangling her.
Anyway, I told my new OB I had no expectations for this delivery. Honestly, my standards were so low that unless one of us died or ended up in the ICU, it could not possibly be worse than my last experience. :worry: I know that sounds bad and melodramatic but I didn't mean to be, just that I was so happy to have made it so far I wasn't picky about details. I've had my unmedicated birth with DS#2 and it was wonderful and everything I had hoped for. So at least one of out four of my deliveries had gone exactly how I had hoped. There are many women out there who never get the birth experience they hope for, so who am I to complain?
I told DH we should play Enya/Enigma on repeat in the OR so they'd hate us. Haha of course we didn't do that. But I had no real requests. There was still a very small (like 2% chance) of the baby needing the special care nursery/NICU for being delivered at 37 weeks by c-section. But I believed it would be okay since both of my boys came on their own accord at 37 weeks, one at the end the other at the beginning. I was hoping I wouldn't go into labor before then.
So we made it to the date and I told the OB I was fine with him announcing the gender (no one knew including him.) And I was sooo shocked :omg: when he announced "IT'S A GIRL!" my first response was, "Are you sure?!?!" :suprise: Of course DH was none the least surprised. I mean I had been dreaming I was having a boy. My intuition obviously sucks! I highly, highly recommend waiting until delivery. So worth the wait! Much more exciting than finding out during the ultrasound.
She came out so angry, I was a little worried. I've never had one cry so much. 9/9 APGARS and 7lb 3oz (good size for 3 weeks early.) She was perfect! And as soon as she was able to breastfeed, she has been the happiest little baby who never really cries... so far. Too early to tell since she's not even 2 weeks old. It's exhausting of course and not easy, but her needs are simple at least. And it is just awesome having a medically-boring term newborn, it is something you don't take for granted when you've had a micropreemie. She is already close to regaining her birth weight and is eating well. I am sure she'll outweigh her sister within a year. They are 17 months (adjusted) apart.
So I'm kind of shocked I ended up with what feels like the perfect 1950s family... two boys and two girls each less than 2 years apart. I hope they'll be friends but it's hard to say. I didn't sway at all for this one but was under a lot of stress when we conceived. So who knows. But we are done... quit while you're ahead. Four is perfect for us, regardless of the gender.
Thank you everyone for following our story. I hope you all get the families that you've dreamed of!
Hanging out at the park
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Little sister & big sister
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Little sister with her long fingers
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What a beautiful ending to this amazing journey you have been on. Your daughters are so cute. So happy your premie is healthy and that your new baby girl was an easy pregnancy and birth. Your story is inspirational and beautiful. So happy for you and your family.
Aww congratulations! Glad everything is going well for your family after everything you have been through.
Oh gosh what a beautiful end (beginning)!! I am so happy for you Retalia!!! :) Hugest hugs and wishing you a disease free winter for everyone to get settled in!