Messages from over the Holidays...

This is a very old archive of messages

Hi Tommy:

Our son, Cameron James, was born 14 weeks premature (the first day of his 26th week), weighing 697 grams (1 lb. 8.5 oz.). He was born on October 24, 1995 and is still in the NICU at Children's Hospital of Philadelphia. His primary problem has been a food intolerance and on January 3, 1996 Cameron had a broviac catheter surgically placed to enable a higher level of nutrients to enter his little body. As of today he weighs 2 lbs. 12.5 oz., but is almost 37 weeks. He is yet to be extubated - although his vent settings are very low (21% oxygen).

It is wonderful to have a resource like "Tommy's Hallway". Your son, as is ours, is a true "miracle baby"!

I have been breast pumping since Cameron's birth - but have a question. What have other mother's used to freeze their milk in? I have had to purchase sterile containers (for $115) and would like a more economical solution. Also, where do you find extremely small preemie clothes?? If anyone has information regarding either topic - or would simply like to share their experiences - please write us at: jgreelis@mail.med.upenn.edu.

Good things come in small packages!!

Hi Tommy:

I just wanted to say thank you for posting all the links to preemie and high risk pregnancy sites. In March of this year I lost my first child at 25 weeks due to severe preeclampsia and placental abruption. I am now 20 weeks pregnant and I have been again diagnosed with preeclampsia and hypertension. We are trying several therapies to keep this baby inside as long as possible but I have been told that this baby will be very early . I appreciate the sites in hearing what others have gone through and what to expect. Also I was under the assumption that babies born before 28 weeks do not make it. It is reasurring to see so many success stories.

Thank you. I plan to visit every site mentioned to prepare myself as much as possible for my future preemie baby.

Hi Tommy:

Hi. I just wanted to thank you for the wonderful story of strength. I am the single mother of a 5 month old little girl, who was born at exactly, to the day, forty weeks. She was a whopping 7.15 and 21 inches. I became so interested in Neonatal care when I had her. Now, I am working on an ASN, to become an RN, then a BSN, and then a MS in NIC. Eventually I want to become certified as a Nurse-Midwife. I thank you for brightening my day.

Hi Tommy:

Sharon and I are the proud parents of a 24 weeker very much like you. Our son, Jordan, was born 700 gm (1lb 8oz) on October 19'th 1993. He was the only survivor of quadruplets. Jordan is now 21 lbs, and growing. He was in the hospital for 5 months and had BPD, ROP, a BP shunt, and finally a trachostomy for a year because his long intubation damaged his air way. He is long since off extra O2 and the trach was removed 3/95, so he is free of all extra tubing and extra help.

Jordan is in early intervention, a program all preemies qualify for, and is doing very well. He is very smart, but is delayed in gross motor and speech. That means he is not walking yet, and he is not talking very much.

Jordan does not care about any of that. He is a very happy boy, and he loves cars, reptiles, basketball, and Barney.

Tell your mommy and daddy thanks for sharing your story with us.

Jordan has been very difficult to feed, and even today, we still make his meals in the food processor. If anyone else is going through similar experiences, and would like someone else to consult with, please email us at DMSchwartz@eworld.com.

David, Sharon, and Jordan Schwartz

Hi Tommy:

It was comforting reading that someone else has experienced what my husband and I have.

After treatments for infertility, I became pregnant with twins. No one could have been happier than my husband and myself. My pregnancy went fine until 28 weeks. I was then put on total bed rest because the doctors were worried about premature labor.

When I went in for an ultrasound at 30 weeks, I was told that one of my twins had died. This was totally unexpected. I was then admitted to the hospital and two weeks later the doctors induced delivery because my surviving twin was not thriving.

On May 5, 1994 I delivered a beautiful 3 lb. 9 oz. screaming girl (Kathryn). I then delivered a silent, beautiful 1 lb. 14 oz. girl (Cassandra). Talk about mixed emotions. I got to hold each of my girls and I feel fortunate for that. Kathryn (the surviving twin) went on to NICU (at Royal Oak, Beaumont Hospital) and was there for six weeks with a similar situation as Tommy's.

Kathryn is a very healthy and active 20 month old now and I appreciate every minute with her; however, I terribly miss my other baby and wonder what our lives would have been like if she had lived. I struggle daily as to how I can let Kathryn know she is a twin and wonder how she will react when she is older.

I would love to hear from anyone who has gone through a similar situation.

Again, it was wonderful reading your story and finding out Tommy was at the same hospital as Kathryn. She was released from the hospital June 14, 1994 so we missed each other by little over a month. We wish you the best and thank you for sharing your story.

Donna

Havfam3@aol.com

Hi Tommy:

I've been sitting here reading your touching story with tears filling my eyes. It all brings back memories of my NICU journey, which began September 30. At 11:00 p.m. on Sept. 29, my amniotic sac burst just shy of 7 weeks early. Being an RN, I knew I was early and that there could be problems. I simply allowed the denial factor to set in. My poor husband was in bed with a temp. of 102, and a nice strep infection, so I made my way to Manchester NH's Catholic Medical Center(no NICU services here might I add). As I walked into the ER, I began getting anxious realizing this was it, my baby was coming a bit soon. On internal exam, I was found to be not dilated, this was good as my OB put it, it would place stress on my baby, thus allowing lung surfactant levels to heighten. (Little did we know that surfactant would not be an issue).

My labor became regular at about 1:00a.m. Sept. 30 An ultrasound revealed my baby was about 5LB.'s. This made the Ped. pretty happy. After 14 hours of good labor, my beautiful daughter Abigail Lee arrived. Abby had a double nuchal cord( her umbilical cord was wrapped snugly around her neck twice). This we believe was a big factor in her early arrival Anyway, she was a huge 5LB. 4 ounces. She was 18 inches long and had 6 and 5 APGAR scores. When I heard her cry, I thought there weren't going to be any problems.

Well, I was wrong. Abigail was quickly taken from me. I remember the feeling when they told me she would need CPAP and that she would be transferred to an area NICU. I remember feeling like it all was a dream. It still feels like that sometimes even as I sit here holding her in my arms. (Please excuse my typing because it sure is hard with a little one in your arms) Abigail ended up needing hood oxygen for only 12 hours, but as you wrote NICU life is one step forward two steps back. On day two of Abby's life, it became apparent that she would be one of those A+B babies. She was put on good old Theophylline that September day, and is still on a derivitive called Caffeine. Abby went up and down for a bit until she had a few cluster of apneic events which resulted in catheterization, nasopharyngeal washes ABG's, spinal taps, IV Vanc. and Gent. and lastly two blood transfusions. (I never mentions feedings because, Abby fortunately had no difficulties with sucking and swallowing, as a matter of a fact the NICU called her a "ravenous little girl at the breast" she could be heard by all from outside our little "set of screens".

41 long days later Abigail was allowed home monitoring, and standby oxygen. Abby is now exactly 3 months and one day. She averages 3-5 apneic and bradycardic events every day. She is doing well as far as self resolving herself. Abby is still on Caffeine which we have tried to wean her off of several times with no success. She is now 10 and a half pounds. She is almost always sleeping through the night(in bed with me of course). She eats about 7 times daily, and loves to be read to. Neurologically the doctor says she is well. From here on I guess it a waiting game to see when she will do the "outgrowing" of the good old A's+B's.

Writing bits about my journey with Abigail has proved to be therapeutic. It helps to hear about others who have had successful outcomes from their preemies. Hope to hear from you soon.

Hi Tommy:

I think you are a brave and lucky baby to be alive. I was born premature 10 years ago. we were both lucky!!!

Aly Glick

Hi Tommy:

Great site to visit. So colourful. But (there always is) reconsider the use of a baby bottle as symbol -- it means ill health for so many babies if it isn't filled with mother's milk. So often it is not.

Good luck.

Nancy, a Neonatal Nurse

Hi Tommy:

Good luck in the future to you. I would like to thank you for this article on the net. My wife and I are right now at Hartford hospital in CT. My wife's water broke on Christmas morning @ 22 wks and 3 days and we are now at 23 wks & 2 days hoping she will not go into labor yet. The info in your write up gives us encouragement that we too can make it. Right now it is awaiting game for us.

Again thank you, Scot & Denise

What a surprise to find this site. Today is the end of our third week with a preemie -- 29 weeker! How encouraging to learn how Tommy is doing. Our daughter has graduated from the NICU to the "Special Care Nursery", having been free of the vent & extubated after only 18 hours. I'll check back to see your continued progress. Happy New year!

Hi Tommy: My name is Cat. I'm an editor for an on-line magazine for mothers called Mom's On-line, we are launching January 15, and will be found on America On Line. I think that your story is important and interesting. I would like to invite you or your parents to drop us a line at Moms Online if you might be interested in writing an article or sharing some stories about the journey your family has made. We would also like to nominate Tommy as Kid of the Day and post his picture and profile on our cover for a day sometime in the near future.

Be well Tommy, hope to hear from you soon. Cat

Hi Tommy!

Congratulations on doing so well! Not only am I the parent of a preemie, I was an extremely premature baby myself!

I was born 14 weeks premature and weighed 2 lbs, 3 ozs. at the age of 2 weeks (they were afraid to weigh me any earlier).

Fortunately I had no health problems except anemia. For the first month I didn't even get to wear a diaper -- my bottom was too small! After that I wore my daddy's hankies. I was in the hospital for 59 days. What was a miracle about my birth was that I was born in 1958. The survival rate then was so low that the doctors told my parents to "forget" about me!

Lots of Love,

Julie

Hi Tommy:

Thankyou. Thankyou. Thankyou!

I have been struggling about trying to find information on preemie babies for ages and then I found your page. We have just been through all the trauma and heartache with our own little girl we named Kira. My husband has put her story on a page if anyone is interested in reading it. I have found great news and stories about other little ones and it has made my Chistmas. I especially liked Sara's story and we wish her and her mum and dad all the best.

Kira is doing really well now and was 5 months old yesterday. I had better go and stop wasting your mail here. I don't know exactly how this works and I hope you get my message.

The page my husband has set up is at

http://www.wts.com.au/~woodland/stevrose.html

I hope that is right. Once again, THANKYOU!

All the best to you and yours from me and mine. Merry Xmas

Rose Woodland

ps. You can publish the address if you like. I would like that.

Hi Tommy:

My twins, Caleb and Leah were born Sept. 13, 1995 at 27 weeks. We had much the same experience you had. Periods of rapid progress followed by setbacks and frustration.

Finally, after 2 months, Caleb came home. He and had surgery to repair bilateral inguinal hernias the next day.

Today he is 2 weeks corrected. He is still on 1/16 liter/minute of oxygen and spent 4 days in the hospital last week because of an RSV infection. He rebounded since then and is eating like a pig.

Leah spent an additional two weeks in the hospital. She had a grade 2 intraventricular bleed that produced hydrocephalus. She was in the process of having serial lumbar punctures, CT's , MRI, and neurosurgical consults during this period.

Fortunately, her head growth stabilized. For the past month she has grown proportionally to her weight. Hopefully, this condition is past us, but we are keenly aware of the possible consequences.

My wife and I have been very busy and have enjoyed having our children home. It sure beats leaving them in the SCN, even as nice and supportive as the staff was. It sure has been a great Christmas.

Steven F. Holle
steve@oz.sunflower.org

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