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Discussion Starter · #1 ·
We had a crazy weekend. The girls had soccer games, both won their games, then we had a little party at the house with some of their friends for their birthdays! Sunday we went to the park, grilled out with some family friends and let the kids play. Today we are back at the NICU, with the girls, and the baby boys. Last night Lincoln was doing so well, breathing 21%O2 on the vent and doing most of the breathing on his own so when he extubated himself they decided to try him on CPAP machine (step down from the ventilator) however that did not last long and it really discouraged me. I keep thinking what if they never wean off the ventilators? I know it will take time and both have come so far. We might get to hold Pierce today if he behaves since he has been on the conventional vent and stable all yesterday.
 

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Wow! They got to try the CPAP? That's awesome! Even if it didn't last long, it's still a step in the right direction.<br><br><br>
And Pierce sounds like he's doing better, too! I hope you get to hold him. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin">
 

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You are remembering the good, I can't imagine how fustrating it is. I'm glad to hear they both are improving. Hope you get to hold Pierce today too!
 

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It does sound like they are both headed in the right direction - that's great!! Our DS1 (ex-26-weeker) did not wean fully from the vent until he was about 2 1/2 years old - he actually came home on the vent but was only using it at night at that point, and gradually weaned down in four-hour increments until he actually started doing better without it than with it (he began to fight it when he would be hooked up at night) and we discontinued it altogether. He had very severe BPD and was also trached until he was almost 3 years old. So, while it seemed a very long time coming, it did happen!!! Now at 6 years old he takes daily nebulizer steroid treatments once a day and has not needed to be reintubated or on supplemental oxygen since he was three years old. He actually did better last winter, which is usually his hardest time of year, than our 2-year-old son who was full term but has significant asthma. That was quite a change for us!<br><br>
Sending lots of positive thoughts and prayers to all of you, and hoping you get to hold Pierce today!!
 

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It is so great how your family is able to continue to have fun with all of the NICU stuff going on. I hope you get to hold Pierce too!! Yah for Licoln's first try at CPAP!
 

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They will. They will come off the ventilators! I'm thinking positively for you and praying for the fam. You've been through such a hard time. I'm glad that they're both improving. Hang in there!
 

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When our dd was extubated, the NICU staff actually told us not to hold our breaths, as most babies have to go back on the vent for at least a little bit. They will both come off the vents, and you will eventually forget what life was even like trying to hold them with all those tubes and cords in the way.<br><br>
Hoping and praying you get to hold Pierce today!
 

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Baby steps are still steps, right! That was good news, try not be too discouraged!
 

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Discussion Starter · #9 ·
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<div>Originally Posted by <strong>wildgarden</strong> <a href="/community/forum/post/9076313"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">It is so great how your family is able to continue to have fun with all of the NICU stuff going on. I hope you get to hold Pierce too!! Yah for Licoln's first try at CPAP!</div>
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It is hard sometimes however the girls need us as well which is why the weekends are spent with them for the most part. Dh and I have to stay strong for them and every little bit with them helps.
 
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