Post by shortstack on Jul 16, 2015 23:10:33 GMT -5
So happy to hear that surgery went well. If you have any physical therapy questions, feel free to send me a pm. Will continue to keep Amelia, you, and your family in my. T&Ps
Post by motownthrowdown on Jul 17, 2015 8:46:32 GMT -5
7-17 update *******loss mentioned in first paragraph-NOT AMELIA*******
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Our primary nurse came back today after being off Tuesday, Wednesday, Thursday. Her nephew's wife was 32 weeks and lost the baby due to a knot in the cord. Please pray for them. First time parents. My heart is breaking for them because this must be a nicu nurse's worst nightmare. Nothing you can do to fix it. Hug your kids and your bumps today.
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End trigger warning
Amelia had a rough spell around 7 last night. She was coughing stuff up from the respirator and wasn't really waking up. The night nurse hadn't been here since Monday and was absolutely shocked when she came in to Amelia in post surgery recovery things like the respirator and the IV. She actually had to step outside to compose herself because she was so upset. I'm not happy that she was upset, but it really touched me to see that they really do care. A lot. Enough to actually cry. We got her settled down and sleeping around 1am. At 4,I woke up to see how she was doing and called in to work because she was still out of it. Everyone thought she would be more awake and off the ventilator by yesterday afternoon, so dh and I were freaking out. We've spent the last 2 nights in her room.
Around 7 this morning, she woke up, tried to extubate herself, and generally was back to her old self. They took the breathing tube out, got her stable, I got to hold her, which helped her breathing. They are going to try giving her a bottle at her 11am feeding. She's getting it through the feeding tube for this one. Our morning nurse had no idea about any of this either (see above trigger warning for the reason).
She's got an ultrasound this morning and hopefully I will have more good news!
So sorry for that family, I'll keep them in my thoughts.
Glad Amelia is doing better. I loved reading that you holding her helped her breathing. I can only imagine how much those moments mean to you! Continued thoughts to you guys!
So sorry to hear about the nurse's family loss. And that Amelia was having some difficulties. But I am happy that she seems to be bouncing back! T&P for you & your family every day.
Sending prayers for the family of your nurse, I am heartbroken for them.
Thinking of you and Amelia every day! It is so nice you have such an attentive NICU team! Amelia is such a fighter, I am glad she is doing better after a rough night! Big hugs
Post by lawndog1216 on Jul 17, 2015 20:52:21 GMT -5
I'm so sorry for the nurse and her family-- MH had to drive a coworker to the hospital today, because this happened to his daughter today, too-- ftm 6..5m pregnant. Just awful. I'm so very sorry for all the families.
Glad Amelia has rallied some and praying for everyone. Thanks for taking the time to update us, too!
Omg... a knot in the cord is my biggest fear. So many thoughts and prayers their way. So glad Amelia is doing better. I'm so sorry about the scare, ugh!
Gosh I read they tend to happen in less than 1% of pregnancies. Seems like it should be higher
I think it's that they happen 1 in 100 births but are only ever tight enough to cause a complication 1 in 2000. I have to admit all the knot convo had me freaked so I looked it up and have now started doing kick counts. All good thoughts to everyone that our babies are safe and sound.
motownthrowdown I'm a few days late here but have read through this post. Glad surgery went well and Amelia seems to be doing well. Did they place the shunt on the top of her head or behind her ear? DD'S is behind her ear but some docs will only place on the top feeling it drains the ventricles better. DD has hydro as well. Hers is from her Spina Bifida. I'm with you on going with a traditional shunt. Do you know If they went Strata or Metos? Kiddos is program able so we have to exercise caution with magnets. Hope all continues to go well. Sounds like you guys have a great team. T&P's continued for you guys.
motownthrowdown I'm a few days late here but have read through this post. Glad surgery went well and Amelia seems to be doing well. Did they place the shunt on the top of her head or behind her ear? DD'S is behind her ear but some docs will only place on the top feeling it drains the ventricles better. DD has hydro as well. Hers is from her Spina Bifida. I'm with you on going with a traditional shunt. Do you know If they went Strata or Metos? Kiddos is program able so we have to exercise caution with magnets. Hope all continues to go well. Sounds like you guys have a great team. T&P's continued for you guys.
Is behind her ear and not programmable. I'm up at the hospital now because they are doing lab work ups for a possible ear infection. DH and I noticed some discharge last night, mentioned it to the doctor, got blown off because she was still on antibiotics from surgery. And now this morning she has a fever of 99.1 which is practically nothing but now they are giving more antibiotics and her IV is back and they are running blood work. I'm absolutely livid. And the follow up ultrasound that they did yesterday at noon has not been officially read yet. The doctor yesterday took a look at it but the neurosurgeon and the radiologist have not given report on it yet.
DH and I are also pissed because I've been asking about some red spots on her head for weeks and was told that was normal. Since Tuesday, when we found out about all this, the answer became "that's because of the pressure in her head." Same thing with her fontanelles (soft spots). They feel them EVERY DAY on rounds and now since Tuesday it's been, oh they are slightly puffy.
Amelia herself looks good today. She's sleeping now but she was passed when they were trying to get blood, which is good. I'm never happy when she's upset, but I am always reassured when she gets pissed. I came in and whispered to her this morning to watch and learn because she hasn't seen me in mama bear rage mode yet.
I put that I "like this" because I'm glad you're on mama bear mode. As a mom your instincts are always on cue and Drs should be more attentive. I hope the infection goes away quickly! Anthony's shunt is also behind the ear and not programmable.
Sorry that it's been frustrating for you guys lately. Keep speaking up, this is your girl and no one knows her better! Continued thoughts that things keep improving!
Post by motownthrowdown on Jul 18, 2015 11:57:46 GMT -5
Her blood work just came back and looks perfect. She's had massive poops today and since she bears down so much, that could explain the slight fever. Nurse said the room was a little warm when she came in this morning, plus with getting her equilibrium back from surgery, all of this could just be bad timing and coincidence. They will do work ups anyway, since she has the shunt, but they said if she was just random baby down the hall with no shunt, they would just watch the ear thing to see what happened.
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