Preemie Moms I Need Your Help

G., Also having a preemie (31 week old) I know how scary the whole "feeding" thing is...I also had the same concerns. I'm not sure where you live, but my pediatrician is in St. Charles and wonderful with preemies. The practice came highly recommended from the Central Dupage Hospital NICU and I am so grateful for their recommendation. Please contact me if you want their information. I should also point out that my daughter (who weighed 3 lbs at birth) is 22 months old and only weighs 20 lbs, so she's still very small!

Hi G.!

It's really important to feel comfortable with your doctor.
My now almost 2 year old twins were born 8 weeks premature. I worry constantly about them, but I feel comfortable with their doctor, and trust her with decisions about their health.

Especially in the first year, there were certain situations where she sent us back to Hope Children's Hospital, where my children were born, to get another opinion about their care. Maybe it would be worth going back to the hospital where Jack was born to see someone else. You could also call his nicu doctor's office and ask for a referral. I'm sure they refer people all of the time.

BTW, although my son, Alex, was larger at birth, at about 6 months, his sister gained weight more quickly, and Alex seemed to be falling behind. Eventhough my twins were close in weight and height, Alex was only in the 15th percentile, while Anna was near the 50th. At 8 months, when Anna was weaned from the preemie formula, we kept Alex on it, but when he was just over a year, he was able to be weaned from formula all together. Now Alex is the larger one, and built like a concrete block.

Best of luck, and let us know what happens!

I would call up the hospital nicu and ask for a recommendation. I am sure those nurses will know which ped's are good with preemies.

I am a huge believer in requesting a second opinion, if the first dr is on track, great, and if not what is the harm of seeking another professional opinion.

Our 1st daughter was in NICU for 10 days (not a preemie, though) and we found the NICU staff to be very supportive, and knowledgeable. They might be able to recommend a Dr, or you might have to do an online search to see what is near your area. Our 2nd opinion came from the Children's hospital in Chicago.

As far as weight gain, our daughter has always been in the less than 5 % for her weight, but we now understand that is normal for her. Before we knew that we went to extremes to make her eat ! We would strip her down to a diaper, blow on her, wipe her with a wet cold washcloth, high cal food, etc ! It was making us crazy ! Nothing worked, I switched pediatricians, and the new dr said the most basic thing to me ..... you are not a big person and your daughter will not be either so quit beating yourself up ! I was so relieved and happy I love our pediatrian, and I am so happy for the 2nd opinion that saved my sanity!

Best of luck to you, hope Jack will start eating more and sleeping less.

A.

I'm not sure where you are located but many of my mom friends who had preemies take their kids to Glenbrook Pediatrics and they all rave about the practice. Good luck!

If you live in IN call First Steps. They have OT, PT, Speech and I am pretty sure nutritionalists. If nothing else they may be able to point you in the right direction.

My doctor had me feed my daughter every 2 hours (I exclusively breast feed) day and night. When she would start to fall asleep, I would gently blow on her to wake her up. After 2 weeks, she did put on weight. My ped also believes in skin on skin stimulation as well (aka kangaroo care) she is now in the 50th percentile for weight and height!

Also, there is nothing wrong with taking him to another ped. Your current one that you like doesn't even have to know.

Good luck, and please let us know!

My son was a 30-weeker. In terms of weight gain, the majority of it takes place when they are sleep. In general people burn less calories when they are sleeping, compared to when they are awake. Try feeding Jack before he takes his nap or goes to bed.

While I don't have a preemie I do work in Early Intervention. I'd recommend one of two things. You could see if your nearest Easter Seals has a nutritionist. Or you could make a referral to Early Intervention for nutrition and to check overall development. Really as a 27 weeker it's usually recommended that they have at least one assessment. Most of the nutritionists in EI have worked with preemies. If you want more info on how to go about making a referral just shoot me as message.

Congratulations on the birth of your sons and I am so sorry to hear of the loss of your son, Kyle. My thoughts are with you.

My thoughts on Jack's feeding issues (and of course, check with doc first):

1. Rouse the child for feedings. Preemies often don't feed "on demand" as they often sleep through feedings, so a schedule might be needed. There are techniques to gently rouse a sleeping preemie so they are in an appropriate state to feed. Make sure that you are using the appropriate nipple shape, flow and density (thickness) for your child's current needs so that he is able to get enough milk without tiring out, but also able to handle the flow without gagging. A call to the NICU OT, PT or Speech therapist who worked on feeding in the hospital could help. They might not be able to recommend a different nipple over the phone, but they could steer you in the right direction.

2. Talk to doc about baby's level of arousal, perhaps a low iron level or thryoid issue?

3. Infant massage has been associated with increased weight gain in preemies.

If you are not enrolled in Early Intervention, I highly recommend it. Request a PT or OT who is very experienced with preemies. You can also request to have a therapist come to your home to teach you Infant Massage. EI also offers Speech Language Pathologists for feeding as well as Nutrition consults with a registered dietician. If you have insurance, you can also go directly to a clinic who specializes in babies. I am not sure where you live, but I know Northwestern, UIC, U of C, Evanston Hospital and Children's Memorial have therapists trained in post-NICU care of babies.

Good luck and keep us posted!!

Hi G. blessings to you and your family,
My daughter was a almost 26 weeker. So I understand your needs right now. She was born at 25 weeks and 5 days gestation, only 1 lb 13 oz. at birth she is my miracle. She is now going to be 5 this November and I give a lot of that good health to the pediatrician (and of course to my own knwledge too). I searched high and low to find one I felt comfortable with. He is neonatologist as well, He still works at a hospital in the NICU to this day. He sits down and looks you in the eyes and asks you if you have any questions or concerns and sits ther to answer them til you feel better. We have a great relationship now and my daughter actually likes going to visit him; go figure that one. Because of that reason alone is why I drive to Orland Park. His name is Dr. Subash Arora.His number is ###-###-####. He also has an office is Evergreen Park but I only go there if its an emergency.
Do your research, I sat down with at least 5 doctors before I choose this one. If you want to switch, be honest with the ones you are interviewing, tell them you want to sit down with them first to meeet them and ask a few questions. It is your right to do so. and yor son has only you to advocate for him.
Don't loose faith, there is a doctor that you will feel that connection with just, maybe this is not the one for you and Jack.
Oh , and by the way my daughter came home on a heart monitor, oxagen, and had severe reflux and was off the preemie charts by 9 months old. Her pediatrician rocks. we went through many formulas and many issues together. He considers all his patients like his own children. Love him. Hopefully that helps you see a bit about him as a doctor.
Good luck and let me know if you have any other questions or concerns, i don't mind if you don't. my e-mail is
____@____.com.