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6/1/99 |
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Nicole spent her first day in her new unit, continuing the breast feeding sessions, but still requires supplemental breast milk via a tube until she regains the suck/swallow, "latching on" routine. She was so tired that she slept right through the 6:00 feed, even was able to file her nails and she didn't stir! She continues to do well coming off the medicine's she was on, with some slight withdrawal symptoms, but overall she is tolerating it well. Wednesday will be the last day of the I.V. medication, she then she will go to an oral less potent medication if she is up to oral delivery, which hopefully means no more I.V.'s! At that point, she will only be on oxygen with the nose prongs at which she as at a very low dose now, which is encouraging that she may be able to be weaned off that sooner than expected. We plan on being able to take her out of the unit on Wed. into what are private "family rooms" which has nice furniture, T.V., pumping machines and a place to hook up her oxygen, this will be the highlight of the day! |
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Memorial Day Weekend Update |
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Nicole was extubated (breathing tube removed from her mouth) on Sunday, as she was taken off the ventilator and is now on oxygen given with nasal cannula (nose prongs)!!! We finally got to see her whole face!!! She is being weaned off the medicines that were used to keep her calm, and she is tolerating it well. She started breast milk feedings on Sunday as well although through a tube via the nose, but today, Monday Lorraine had her first breast feeding experience where Nicole got the "real thing"! She still will need supplemental feeds for a couple days until she learns the whole latching and sucking routine! She was also transferred today back to her original birthplace as she is doing so well, it is much quieter for her and we feel comfortable with the unit too. We will miss the staff at Children's and thank them dearly for all there support and encouragement! I have new pix of Nicole where you can now see her face! |
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5/27-28/99 |
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Nicole some of her best days yet, making excellent progress! She was active again in the am then slept most of the afternoon. She was able to be started on breast milk feeds (via a nasal tube, since she still is intubated), but Lorraine got to partake in it and it was great fun!. Another joy (for Lorraine only!!!) was that she got to change Nicole's diaper twice yesterday! Overall she is making good progress medically, it will still be a couple days until she can breath without the vent, but she is comfortable with it. She is tolerating the breast milk and now we are waiting for that all exciting bowel movement! She continues to lose excess fluid and is thinning out. We were both able to hold her for some time and it was a joy to watch her check us out, by watching her facial expressions. She had a few visitors, Aunt Marianne and cousin Ben, as well as Charlene stopped in to say hey! 5/28/99 Nicole had one of her best days yet, making excellent progress! She was active in the am then slept most of the afternoon. Yesterday was the first day that I was able to hold her, quite an experience holding your own child for the first time, of course Nicole slept through the whole process of transferring her to me, slept for 2 hours on my lap and back to her bed! We can only hope that she sleeps this much when she comes home!Great Strides: Nicole got all the tubes coming out of her belly button out, replaced with only one line in the foot. She got her foley catheter out, now able to wet her diaper at will!.The biggest event was that she graduated to her new home, "Cole's Crib"
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5/26/99 |
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Nicole had an eventful day, they attempted procedure to be able to access her insides through a vein (PIC line) to be able to feed her but due to her being somewhat puffy yet and having such fragile veins (like her mother), they could not get it. So... they are going to use a different type of access tomorrow, which will be less invasive, and soon she will be able to take in milk through the oral route! Otherwise, she had a great visit with grandpa Murphy who had a wonderful time playing with her, she was wide eyed and moving all about (perhaps it was the site of the guy!). Afterwards, she was beat and crashed early, allowing the parents to go home early as well. Also to all of you who noticed, some of the pix on page 2 (Bruce) were not working are now working. I have a load of new ones to put up hopefully tomorrow. |
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5/25/99 |
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| Nicole made excellent progress today!!She was taken off her hi-flow ventilator, which means that she is breathing better with less effort. It also means that the tube attached to the intubation tube is flexible which made it possible for Lorraine to finally hold her after 10 days!!! This was very exciting, we did get pix of this event. She will probably be on this type of vent (CPAP) for a couple days as they begin to wean her off it. I will have new pix up on 5/26/99 of the above events.Tomorrow they are planning on putting in a new venous access line and removing the lines from her umbilical region which means that in a couple days she will be able to tolerate breast milk! | |
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5/24/99 |
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| Nicole had a bit of a fussy night, tried to take out her intubation tube, and was quite active, she is getting perturbed ready to come out and play!The best news is that her removal of the left chest tube is holding although there is some residual air, she is holding well and the doc's feel that it should heal on it's own.We had an excellent surprise when Lorraine took off the eye patches (used to decrease external stimulation) and her eyes were open )dark maybe blue, brown or black?) and she appeared to communicate to Lor, this was very exciting for the both of us as she kept her eyes open for quite some time without having any problems with blood pressure or oxygen saturation!Took more pix today, should have them up tomorrow night hopefully you will be able to see her eyes open.Medically she is improving steadily and over time, tentatively off the ventilator in the next few days. Her oxygen saturations are very good as well as her blood pressure and she is mobilizing fluid. | |
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5/23/99 |
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| Nicole had an eventful day, left chest tube came out and she had no complications. Unfortunately one of her excellent nurses (Liz) took a spill and is out for a couple days but Maria stepped in and did an excellent job! | ||||||
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5/21/99 |
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| Nicole had a good day, both the right chest tubes are out and holding well.She was a bit fussy and could not tolerate coming off the nitric oxide today | ||||||
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5/19/99 |
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| Nicole was stable and her blood pressure improved as well as her oxygen saturations. | ||||||
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