Hi Everyone,
I just wanted post a short post this evening to give everyone an update on Isaac, ask a question about his current course of treament and to share a conversation I recently had with a good friend.
We had our daily visit with Isaac today. He still looks really think and perhaps has lost even more weight since yesterday. By chance, I received a call from a doctor with our insurance company who wanted an update on Isaac and Sonia. During the course of the conversation, I learned that micro preemies like Isaac are given a lot of nutrients via IV almost immediately in order to maintain and increase weight. This seems to be 180 degrees opposite from the current course of treament Isaac is receiving. Our doctor seems intent on allowing Isaac to lose a lot of weight and development time in order to rear him only on his mother's milk even though it may take weeks for him to start taking in the 80 - 100 ml a day he apparently needs just to break even. For those of you who have had a preemie, could you tell us whether your doctor provided lipids, amino acids, etc... via IV?
I know Sonia and I have repeatedly thanked all of you for your prayers, support and posts. With respect to the latter and those of you who have been generous enough to share your stories and experiences, I want to apologize for not mentioning this until now. Since we have been posting on this blog, we have received so many comments about how your posts have been a blessing and source of inspiration and encouragement to so many. We just thought you should know.
God bless,
Jong
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Hi I've posted before, I had twins at 24 weeks... losing one. I was 24 weeks they weighed 1pound 5 ounces and 1 pound 1 oune.. they were IMMEDIATLEY put on what was called Total Parenteral Nutrition (TPN)through IV feeds. To gain weight and were supplemented with breast milk/formula when they could handle it. Nathan stayed on the IV feeds until he was taking a bottle for every feeding and that was a good 9 weeks after he was born! They lost a little weight at first but gained around 5 ounces the first 2 weeks.... it is worrisome to see they are not having Isaac on anything! I am praying for you and your little family!
Sammie
well, from a very very relevent experience i can tell you with wren he ONLY received TPN's, Lipids, and the like IV nutrients for the first couple months because he perffed his bowel. (he had a hole in his intestine a week after he was born due to his preematurity and i THINK because of the feeds and his body not being able to handle it yet. they ended up putting a drain in his side and "cleaning him out" every day for a couple months until a fistula formed enough for his bowels to empty out the side themselves. he started stooling the normal way around 3 months old, but then ended up with a blockage and had an illiostomy done at 4 months old (i think he was 4 months). if your dr's even take advice (i'm not sure they do by the sound of things) i would push for IV nutrients. his body (from my understanding of having a 22 weeker) is not that of a full term baby's and shouldn't be expected to function as one either. at the same time, the breast milk is wonderful and if he's tolerating it i would say do as much as he can do. but not at the expense of him losing weight. being he only weighs one pound (if that right now) he doesn't have that luxury of being able to lose a lot. i'm sure you are aware of that. most of the dr.'s that we had were incredible. they said if we, as the parents, ever had a "feeling" about something to tell them. they are the dr.'s and they are very good...but you are the mom and dad and you have the instincts about your son. God intuitively gives you wisdom concerning your children and you need not be afraid to be his advocate. i'll be praying....
erin eccles
My twins received nutrition imediately through IV as well! What is their reasoning??? Your baby is not meant to eat/digest food yet!! They should definitely be giving Isaac nutrition via IV and then beginning supplemental breastmilk at 1cc ever 3-6 hours to make sure that he can digest it properly. I'm praying these doctors are doing what Isaac needs to get stronger every day.
Jong,
Jason (my 23 weeker) was also given lipids, aminio acids and nutrients. He did however lose about 3 ounces during his first week. They began feeding him my milk through his nose about 2 1/2 weeks after he was born.
There were many, many times I doubted the course of treatment that the doctors gave to Jason. But I came to learn with each passing days to allow the doctors to do their job. This is not to say that you can not give your opinion but pick and choose your battles. Isaac will likely be in the NICU for at least 90+ days (the trimester that he missed).
I seriously doubt that Isaac's doctor is allowing him to starve himself to death. How long has this doctor been working with preemies? Has he done this course of treatment before with successful results? Don't ask him... ask the nurses...
Personally, the treatment concerns me but so does the fact that you only get to spend an hour a day (?) with your son.... that makes no sense to me.
okay, that's it for me now.
As mentioned in my previous post, I will try to post photos of my 23 weekers on my blog today.
http://kimjrnlst.blogspot.com/
Kim
EVERYTHING IS HAPPENING AS IT SHOULD...
you know, as an added note too, i just had a baby girl in february and she was 34 wks 3 days, and SHE was even on only TPN's for the first 2 days, then they started her feeds at 5 cc's an hour and progressed SLOWLY from there until she was up to full feeds. it definitely sounds very funny and fishy to me. we had one dr. who tried to convince us without a doubt that we needed to take wren off of life support and just "let him go." a lot of it came down to the cost of him being there and him "taking up space" that could be used for "more" healthy babies. needless to say we ignored him....pretty much always. boy, sorry to be so negative. i just am frustrated for you. it's hard enough to be where you are at. it's harder not knowing what you need to do for your son and trying to trust that what the dr.'s are doing is what's best and what will help issac. praying.
erin eccles
Jong... I know you want to trust doctors completely, but I would push for Isaac to be on IV nutrients ASAP. Yes, mother's milk is technically "best," but right now Isaac needs nutrients of any sort. And an IV with TPN, etc., is the standard course of treatment. We will keep all of you in our prayers. Thanks for taking the time to give the updates.
Jong
I thought this when I read your post yesterday and thought maybe he was on TPN(IV) and you just hadn't mentioned it. Both my boys were on TPN and they began breastmilk feeds on the second and third days. They then continued on the TPN until they were on full feeds. I am not sure the thinking of the doctors there but all the babies in our NICU started on IV feedings just different amounts depending on their needs. I would definitly bring it up to your doctor. Praying for you Sonia and Issac!
reno81/hannahs prayer
From what I know premmies are immediately put on TPN (total parenteral nutrition) A coworker of my dh had a baby at 36 weeks and the baby was immediately put on tpn to increase its weight and he was around 4 and a half lbs. I know you do not want to doubt your doctor, but I think breast milk at this time is not enough, Isaac's tummy isn't even supposed to be digesting milk yet. My daughter was born at 37 weeks and had to go to the nicu and was immediately put on an iv to keep and gain weight. We had to weigh and measure each after each breast feeding session to ensure she was getting enough. I know you don't want to doubt your dr, but I think he needs to be more aggressive when it comes to Isaac's weight loss (and hopefully gain)
I will be praying for wisdom for you Sonia and JOng and for your drs.
Tracy
Jong, Our micropreemies were born at 24 weeks day 0. The neo-natologists had Michele pumping and freezing the milk (the colostrum, actually). The plan from the beginning was to begin to feed this to the twins as soon as they could . However, at first they were being fed via IV because their stomachs weren't developed enough to handle the breast milk. I had read that there are neo-natologists who strongly believe in making colostrum the center of a baby's nutrition "as early as possible". Based on our experience, I would be insisting on IV feeding - however - there may be other factors doctors are considering. Ask, ask, and ask again. Make them explain it until you're satisfied. Make sure to ask different neo-natologists on the staff what they think. You'd be suprised the differences in opinions.
Different neo-natal facilities have different philosophies based on their success rates or current studies. I recall in 2003, with our micro-preemies, the hot issue was taking the micro-preemie off the ventilator within the first week - studies showed this reduced longterm lung problems and dramatically reduced the length of stay in the neo natal ICU. As a parent I was terrified. It's hard to keep in mind that they're on your side. After all, they don't have the emotional investment that you do.
Jong, I am sure you know this but it is so important for Isaac to be massaged and be stimulated physically as much as possible. They had done studies to show that premies fare better with human touch.
I also agree wiht the TPN as Isaac might not have the wherewithall to digest milk at such early stage. but obviously he can be supplimented my breast milk.
Gary
Hi Jong and Sonia,
I am friends with Aileen Buck (she is in my small group), and she told me about you guys so we could pray for you and your family. I have been reading your dailiy blog, and I am empathetic to your course. I finished my pediatric residency last year. I spent a few months in the NICU during my training. At my training hospital (Pittsburgh CHildren's Hospital), we usually started all the micropreemies on TPN after just a few days of plain IVF's. The reason is because, first, preemies need a lot of added nutrients/minerals that plain IVF's can's provide. Secondly, it is sometimes highly risky to push feeding the gut in large volumes, other than "trickle feeds". The biggest complication that all neonatologists are aware of is "NEC", or necrotizing enterocolitis. This disease typically occurs because there is not enough blood circulation to these preemies' guts and because their gut is still so immature. When you put food in the gut, there is risk that the normal gut bacteria can pass across the fragile gut lining into the bloodstream, then lead to a severe gut infection. (one blogger wrote about their similar story). It can set back their course. And already ventilating their lungs is number one priority, thus infections can be quite a complication. So, please don't feel discouraged to ask your doctors about TPN. Or ask for evidence for what they're doing. And feel free to email me if you have any questions. I know you mentioned you have many other doctor friends helping, but I'm available too if you ever need anything.
Sincerely,
Amy Jean
drjean2002@aol.com
Hi Jong and Sonia,
same here... all my preemies had IVFs and TPN... eventually milk through a tube.... for a long time.
Also, if there is any way, it would be great for Isaac and for Sonia to be together... I sat with my first 24 weeker about 12 hours a day and just left for sleep.... I really believe it is comforting for him to have his mommy or daddy there and it will help him grow!
I know you're probably overwhelmed... It's hard to buck a doctor's opinion (Texas term...buck)
But you instinctively know what is best for your baby... Praying for wisdom for you and peace for the family.
JessClark (HP)
SONIA & JONG,
I WAS CONNECTED TO YOUR SITE THROUGH ERIN ECCLES WHO I NOW CONSIDER A DEAR FRIEND FROM AN ONLINE RELATIONSHIP BASED OFF OF THE FACT THAT OUR BOYS HAD VERY SIMILAR PREEMIE/NICU EXPERIENCES. MY SON, NATHAN, WAS BORN AT 24 WEEKS HERE IN GRAND RAPIDS, MI. I'VE BEEN FOLLOWING YOUR STORY FOR THE LAST COUPLE OF WEEKS AND MUST SAY THAT I, TOO, WAS VERY SURPRISED TO HEAR THAT ISAAC IS RECEIVING NO NUTRITION AT ALL. BY THIS POINT I'M SURE THAT YOU'VE DONE SOMETHING ABOUT IT AS IT APPEARS THAT YOU'VE HAD ENOUGH PROMPTING BY OTHERS. I JUST THOUGHT I'D WRITE ALSO! GAINING WEIGHT IS THE NUMBER ONE GOAL AT THIS POINT, NOT GETTING BREASTMILK IN ISAAC. I DIDN'T EVEN THINK THAT A 23-WEEKER'S GUT COULD HANDLE IT, TO BE HONEST WITH YOU. I THINK NATHAN WENT ABOUT 1 MONTH ON TPN ALONE.
ON ANOTHER NOTE, HE LOVED A FIRM TOUCH AND ME JUST BEING BESIDE HIM IN HIS ISOLETTE. I HELD HIM AT ABOUT ONE MONTH OLD AND I ENCOURAGE YOU TO SPEND MORE TIME IF ALLOWED WITH ISAAC. HE DOES KNOW YOU! THE SKIN-TO-SKIN CONTACT YOU MAY HAVE HEARD ABOUT WAS AMAZING FOR BOTH ME AND FOR NATHAN. THE BONDING WAS PRICELESS.
I ALSO GAVE BIRTH TO TWINS THREE YEARS AGO AT 21 WEEKS GESTATION. MY HUSBAND, NATE, AND I HAD A FEW PRECIOUS HOURS WITH THEM AND I AM SO GRATEFUL THAT YOU COULD SPEND SOME TIME WITH YOUR DEAR RACHEL BEFORE GIVING HER TO OUR LORD FOREVER.
I HAVE BEEN PRAYING FOR YOU EACH NIGHT AS I FEED MY 4 MONTH OLD, MILES. SO REALLY AROUND THE CLOCK HERE IN THE STATES YOU HAVE PRAYERS! :)
NATE AND I GREW SO MUCH CLOSER AND ARE BETTER PEOPLE BECAUSE OF OUR NATHAN, WHO IS NOW 5 1/2. HE'S A MIRACLE AND SO ARE YOU CHILDREN. WE ALSO DEVELOPED A MUCH CLOSER RELATIONSHIP WITH OUR GOD. MAY THE SAME BE TRUE FOR YOU.
GOD BLESS YOU TODAY!
IN HIM,
ELISE VANDYKEN
My preemie was a 35 weeker and he was given nutrition through the IV for the first three days in the NICU, then he was given BM through a feeding tube the fourth day, and then was on the breast at the end of the fourth day, to make sure his digestive system could handle the breast milk. I also am astonished that you only get one hour a day with Isaac. I spent almost every waking hour with Nicholas after I was given the OK by my doctors to be with him. I only left when the nurses or doctors were doing procedures, or I needed the sleep. The doctors all said that Nick recovered and got healthy as quickly as he did because of my husband and my dedication of being with him as much as we could. In the US they advocate kangaroo care, not give a parent only an hour with their ill child.
My daughter was a 27 weeker and she was put on the TPN that others have mentioned. They weighed each diaper as it was changed to make sure that she was getting enough fluids.
You should be allowed in to see your baby as often as you like. Here in the US, parents have 24 hour access to the NICU and are allowed in there whenever they want to be.
(I am a friend from Hannah's Prayer!)--Jodi
You guys have already been given great advice about IV fluids that Isaac should absolutely be receiving. His GI system is not developed enough to recieve all his nutrition from breast milk at this point.
One other thing you may want to look into is how the staff is providing for Isaac's current developmental level. At 24 weeks, he should be in a very dim, very quiet environment, be recieving pain control medications since he is still on the ventilator, be minimally disturbed to allow for periods of uninterrupted sleep, and be supported in a tucked (fetal-type) body position to mimic how he would naturally be in the womb. I'm a Level III NICU RN, and if you would like, email me. I can send you a few booklets, and probably some developmental stuff, that would give you more info. (DwinksWife1@hotmail.com)
I'm praying for you guys daily....
Tiffany C. (Dwinkswife from HP)
http://preemiegroup.1.forumer.com/
Check out this link! It is a great group of preemie parents with GREAT advice on everything!!!
PLEASE check it out!
(Jod-dog--Jodi--from HP)
we had a preemie and were strongly advised to be with her every waking moment. reading, singing and talking to her. she was brought home a lot faster because she knew we were there.
i would do everything in my power to see that he gets the iv that his little delicate preemie body so desperately needs. he should NOT be losing weight....AT ALL.
My dear friend Mary Rundle shared your story w/me and I've been praying for you and your family. Isaac has especially been on my heart today. Praise God for the other doctor who you were able to communicate with. I cannot imagine the grief you are experiencing in the loss of your precious daughter. I know our heavenly Father is cradling her in His arms. You all will continue to be in my prayers.
In Christ,
Karen, Virginia Beach
Hello, I heard about your twins through a preemie group I belong to, having had two premature babies (27 weeks and 32 weeks) myself. I am praying for your son, Isaac. Since you asked for comments about TPN, I thought it safe to reply that I think you should insist on the TPN despite the doctor's recommendation against it. If Isaac is their one and only experience with a 23-weeker, they will hopefully do what is necessary to learn about TPN and how to use it. What a horrible decision to have to make as a parent, though. It is hard to have to make your own medical decisions and go against medical advice. If you would like to speak to a neonatologist in the US for advice, I believe that Dr. Karen Puopolo at Harvard Medical School/Brigham and Women's/Children's Hosptial Boston would be an excellent choice, she has experience with the smallest babies and is a wonderful, kind, gentle person. She can be reached at 617-732-5420. My name is Heather Mansfield, she cared for my 27-week son, James, in 2002. She cried with me when he had setbacks and was happy with me when he was doing well.
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