I'm Mary Searcy and I'm so happy to have found this group! My son David was born 12-23-93, 8 weeks early, after just over 5 weeks of bedrest due to preterm labor. We were very lucky, and he was breathing on his own from the start, and went to the intermediate nursery instead of the NICU. Unfortunately, he did need to stay a month, and most babies in the intermediate nursery stayed only a few days, so I don't think we got the support the parents with babies in the NICU get (at least I hope they get more support!). Also, since we were never in the NICU, we got no followup whatsoever. Now David is a happy, healthy 2 year old, although his first year was very difficult. He had reflux and colic, and just didn't sleep. For the first few months, I would get 2 hours sleep total in a 24 hour period, usually 15-20 min. at a time. He didn't start sleeping through the night until he was 18 months old, but now he's just a joy, certainly worth all the earlier hard work. He's a little speech delayed, he only says about 40 words at 26 months, but no one will say for sure whether or not that was due to his prematurity.
Right now I'm 20 weeks pregnant with #2, so I'm trying to just enjoy the remaining 6 weeks before I have to go on restricted activity and/or bedrest. I know the odds are very much in my favor to go to term this time (I've been told that I have a 20-25% chance of another preemie), but I also know that there is the very real chance that I'll go through it all again. I think I've got the statistics on survival at each gestational age burned in my memory. I just keep telling myself that right now there would be a slight chance of survival, albeit with a very high chance of long term problems; another 5 weeks and the odds are 50-70%, and we held my preterm labor off for 5 weeks last time. Bascially, every day I can make it problem free after 27 weeks is like a gift, if I can make it to 32 weeks without a problem, I'll be jumping for joy (but in a horizontal position), and at 35 weeks I let out a huge sigh of relief!
I would love to hear from anyone who's pregnant again (anyone else feel like a timebomb?), who was on extended bedrest, or is in the Grand Rapids, Michigan area!
Mary
I am not the parent of a premie, but I'm a neonatologist. My goals in joining this list are mainly two. One, I could be an information source. Two, I can learn what problems are out there that I may not have run across or appreciated enough, and learn about them. This is especially true of problems that come up after going home from the NICU.
My concern about joining this list is I don't want to inhibit others from speaking their minds because there is some doctor lurking out there. I hope not to have that effect. I have been a relatively active member of America Online's premie parent bulletin board for a few months now. I think I have been helpful there, and I don't think I have cramped anyone's style. I am perfectly willing to unsubscribe if people here feel I'm getting in the way.
Professionally, my special interest is the extremely premature baby, less than 25 weeks of gestation. In particular, I'm interested in the blood circulation problems that often afflict such babies in their first few days of life. I'm also interested in minimizing their lung injury by getting them off the ventilator and onto nasal prong CPAP at a very young age. (We get about half of our 23-24 week babies off the ventilator at about one week of age, give or take a few days.)
As a parent, I understand some of the problems many of you are experiencing about the lack of good support after discharge because I have a daughter with PDD, pervasive developmental disorder. PDD is most easily described as "partial autism". It is unlikely my daughter will ever be able to live independently, although we remain hopeful and continue to work as hard as we can to minimize the effects of her condition. Getting her the help she needs is a constant struggle, just as it is for many of you.
I look forward to "talking" with you in the future.
Doug
My name is Lorri Hopkins and my son Joshua was born 7 weeks early on September 19, 1995. He had a 25 day stay in the NICU here in Austin, TX. At first it seemed like all he would do is take steps backwards, so it did surprise us when he suddenly one day started making huge strides forward and never looked back. When he was born they only needed to give him a little oxygen and they thought that his lungs might be developed enough to not require too much care. Alas, by mid day he was under the "cake dome" (oxygen thing) and then he was put on a ventilator. After the RDS was taken care of, he still had problems digesting and of course the apnea spells. We had ups and downs with trying to get him to eat an entire feeding without getting worn out. The last week of his stay, everything seemed to come together. He was released without any need for medication or a monitor. He was 4lbs 5oz at birth and came home weighing 5lbs 3oz. At times it appeared we was not going to make it out before his due date.
I'm glad to see this list exists. I hope to be able to help other parents going through the NICU experience.
Lorri (mommy to Joshua 9/19/95)
Ps. Just updated Joshua's WEB page.. http://www.io.com/~hopkins/joshua.html
My grandaughter Karlie was born at less than 25 weeks. She weighed 1 pound 11 ounces.
She spent 3 months and 9 days in the hospital.
She will be 2 on April 26. (Corrected age about 21 months.)
Karlie is doing very well for all she has been through. She is crawling everywhere and pulling up on everything. She will not sit up but in the last few weeks she has learned to balance on her knees and legs.
Her communicating skills seem normal and she is saying words and starting to put words together like "I love you".
She isn't walking yet due to her left leg being turned in slightly and when she stands she usually tippy toes on her left foot. She will be fitted for braces in the next few weeks and they are telling my son and daughter-in-law that she may have to wear them for a long time.
Since reading the list I have seen one letter concerning tippy toes but none concerning a preemie who needed braces or with a problem like Karlie's. Her muscle structure in her legs looks normal and she can stand on them fine while holding on to something.
They also are saying that this may be a control problem from her brain. (Maybe the neonatologist could comment on this)
Karlie is a very happy child and we love her very much.
This list is great...Thanks for listening.
Any information would be welcome.
John Grice
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John W. Grice e-mail: johng@blueridge.cc.nc.us
Our twins (Joshua and Stephanie) were born 1/24/95, 10.5 weeks early. He weighed 1.5 lbs (IUGR) and she 2.5 lbs. They were born via an emergency C-section due to preeclampsia and Joshua's placenta abrupting at a scheduled appt, right before the doctor's eyes. Unfortunately, Joshua had major complications and died after 2.5 days. Stephanie is now 46 days old, still in NICU, and doing quite well. She has had a number of the typical premie problems along the way, but so far she has overcome them. She had a grade 2 bleed in the first days of life, which when checked a few weeks later, was called a grade 3 bleed because although the blood had readsorbed, her lateral ventricles had enlarged considerably (1 cm. diameter where they should be no more than .2 cm).
She has hydrocephalus. They are checking her weekly via ultrasound to monitor any changes and determine if she will need to be shunted. It appears that the ventricles are remaining the same size so it appears they will not require shunting. Since her head circumference did not appear to enlarge when the ventricles did, they said her brain was smaller. They did not have much information on the long term prognosis for babies that suffer from this condition. We are interested in any information &/or experiences others have in this area, so we can know what to look for and intervene early to help her if possible.