Re: Please hug your babies UPDATE page 24

I never post on here but felt compelled to reach out because I know how much this SUCKS - my baby was born in November at 26 weeks, and we spent 10 weeks in the hospital and it felt like torture. My husband and older daughter got sick on Christmas Eve so I was there alone with her while they were home sick. Having a child in the hospital, especially with another child at home, is so so hard and I feel exactly the same way about it spoiling the experience of the infant months when it's your last child... It feels like so much of the normal baby stuff is just being taken from you. Even when we brought her home a few weeks ago, it was on oxygen and monitors, and we wound up having to do CPR and ambulance her back to the hospital 3 weeks later when she stopped breathing. Its like like you really just can't catch a break or enjoy any of it, even though you try so hard.

I will say that you will emerge from this a stronger person, and that somehow moms just get through it. St. Mary's is great and I know it's scary to think about long term issues, but we never really know what those will be so we just adapt. We respond to our kids' needs, whatever they turn out to be and are grateful we have them. Life for us has been adjusting expectations and not giving up hope. I know having been in your shoes that it's okay to be so grateful your baby survived a near miss (you've probably heard that cute term "acute life threatening event" or ALTE, ugh) and still feel sad about all of the things that are going wrong. Just have faith that everything will turn out okay and ride it out - there's no right or wrong way to deal with this but to do the best you can. I always felt that the best thing I could do for both of us was do as many "mom" things as possible and view her as a baby, not a patient, and make sure the hospital staff does too.

Feel free to FM me if you need to talk and I will be thinking of you

Please hug your babies UPDATE page 24

Any updates?! How is Lila? Hope all is ok

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I can't believe this update. What you and your family has endured over the last month is unimaginable. Just try to take it step by step and keep reminding yourself it will get better. Thinking of all of you!

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Hope Lila doing much better

Please hug your babies UPDATE page 24

We're hanging in there! Lila is starting to recover. They'll retest her on Monday. Hopefully it comes back negative and we can move forward.

Please hug your babies UPDATE page 25

Many prayers for Lila!

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I'm so sorry for everything you're going through. I can't imagine how hard this must be. Thinking about you and hoping for a speedy recovery of everyone. Stay strong!

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Many prayers for Lila - thinking of you and your family.

Please hug your babies UPDATE page 25

You guys are in my thoughts every day. Hope you are doing better.

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I can't imagine what you are going through. You are a tough momma. for the best.

Re: Please hug your babies UPDATE page 25

Hoping lil Lila is closer to going home with her amazing family!!

Please hug your babies UPDATE page 25

It's like we're experiencing months 0-4 all over again. Lila has horrible gas pains and is so uncomfortable. They'll only give her mylicon every 8 hours or so. She finally just fell asleep and I hope it's for the night but who knows. Last night she slept about 5-6 hours before she got her meds at 4am- stupidest time ever btw.

Fingers crossed that she tests negative for any more viruses and we can move on from this past week of nothing.

Please hug your babies UPDATE page 25

Swab is done. Now we just wait for the results! Negative we can stay and wait for transfer to St Mary's. Positive we go home since it's just a cold and then we have to wait for services.

Please send negative vibes!!!

Re: Please hug your babies UPDATE page 25

Re: Please hug your babies UPDATE page 25

Posted by Dani

Please hug your babies UPDATE page 25

NEGATIVE! As soon as the nurse came in to tell me, I took Lila for a much needed walk around the floor. Poor baby has been stuck in that room for a whole week!

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YAY! I was so happy to read your latest update.

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Re: Please hug your babies UPDATE page 25 again

Praise God!!!

Please hug your babies UPDATE page 25 again

Hooray!

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Please hug your babies UPDATE page 25 again

I find myself questioning every little thing she does. Last night as she was falling asleep, her eyes opened wide and her arms twitched a bit. I have no idea if it was a startle reflex or a seizure. She did it twice. There are other things too that I can't tell if it's normal infant behavior or a result of everything that happened.

I told the doctors and they're increasing her keppra dosage just in case.

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Continued prayers

I would find myself questioning everything too. I even do it when DS is healthy!! Any update on the bed at St. Mary's? Have you visited the facility? If not, I would suggest you take a tour and introduce yourself. You never know, it may bump her up on the waiting list. I work in the SW dept. at a hospital in Queens and would suggest this to any family member who is not crazy lol.

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I'm home with a fever. I don't feel sick but just in case, I'm staying away.

I wish I could be there with her because neuro is coming in to check on her after I mentioned the twitching. I think she may have infantile spasms which is a very serious seizure disorder that can have very serious effects that have me extremely worried.

Please hug your babies UPDATE page 25 again

I think about your little girl, you, and your family daily but I will say a special prayer today that Lila does not have IS and that neurology comes to a quick (and benign) conclusion regarding the spasm.