So I was sitting with a fussy David last night rocking him and looking at Mary Louise silently begging her to wake up. I saw her little arms flailing overhead as if she was finally awake and stood to look at her. She was red down one side and the heater on her radiant warmer was still heating at 100% (it is supposed to adjust with her body temp). The nurse had repositioned her and forgotten to reposition her temp probe so she was lying on it. Now, usually if this happens, the baby gets cold because the probe is under a blanket or a warm body and there is a false high reading. However, in Mary Louise's case last night, for some reason the machine thought she was cold and was therefore heating her up to a nice vibrant red.
I repositioned the probe and took her temp with my free hand- all with David in the other arm. Mind you no nurses (especially not hers) were to be found. She was way over normal temp. My baby was cooking while I was sitting right there!!!
The probe re-read her high temp and finally alarmed and a few minutes (I did say minutes) later the nurse sashayed round the corner to find me glaring in her direction over my red baby while putting my cold hands on her little arms to cool her. I finally told the nurse she was overheating and the probe had probably gone bad. SHE ARGUED WITH ME! Ha - even though it was quite apparent to any moron that Mary Louise was in fact hot and her temp was in fact high, the nurse argued with me and said it shouldn't be necessary to move the probe everytime she moved Mary Louise. That that simply was not how the warmer worked. I said that regardless, she was overheating.
Long story short? that stupid pain in the ass nurse argued with me once more when the damn warmer started to heat her again. So Brent and I stayed there most of the night to do nothing more than watch over our little ones.
She is still on the vent today and I am sitting in the waiting room typing this during their shift change. I was just told by the nurse that the residents are in charge tonight and they "don't want to extubate her". Fantastic - another brawl's a brewin'.
Love, Heather
P.S. little david is doing about the same. Much fussier today than yesterday but has been able to sleep quite a bit as well. He took all of his bottle this morning with me (did the same yesterday) but the evening bottles seem to be what gives him the most trouble - we'll see how he does tonight. He is still having blood in his stool and they sent cultures off this morning. I don't even want to think about a positive result and all the fantastic treatments that go along with it. Will let you know though (of course)...
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What is wrong with these people? Stay strong. Try not to kill anyone - you won't do any good from prison (um, not that I'd know personally).
ReplyDeleteOH again I am so sorry you are having to deal with such incompetent people. Thank God your babies have you and Brent there to keep watch over them. Praying hard over here for both of them to get well soon. Also, I am sure you have explored this route, but find the higher ups and complain, bi*ch and complain more about the treatment you and your babies are receiving.
ReplyDeleteI am horrified at the treatment that little Mary Louise is receiving. Is there any hope that you will be going back to the other hospital any time soon?
ReplyDeleteI don't blame you for being afraid to leave the babies there alone. You and Brent may have to start doing shifts to watch over them and you both get some rest also.
Praying.
All I can say is that my thoughts and prayers are with you as you deal with these unprofessional and incompetent people! You and Brent have been incredible! Sending lots of love to all of you! I look anxiously for your blog everyday!
ReplyDeleteHi. I've never commented before but I follow your blog and your little ones hold a dear place in my heart.
ReplyDeleteI wanted to maybe put something out there reguarding your little ones bloody stools. My son was allergic to all dairy and the only symptom he had as a baby was blood in the stool. He was also allergic to soy. So I could not breastfeed and had to use this really expensive hypoallergentic formula. Just and idea...
I have been following your blog and I have never posted. I wanted to also comment about the blood in your son's stool. My daughter was also allergic to dairy and the only sign she had as a newborn was blood in her stool. She was able to tolerate soy so I had to go on a soy diet to remove the dairy protien from my milk. She eventually went on a soy formula and the the blood in her stool went away. Not sure if this is something you can ask them about but maybe it will be of some help to you. Your family and your sweet babies are in my prayers. I know hard it is to have them in the NICU...both of mine were in the NICU. for about 2 weeks each (not much compared to your NICU stay so far!)
ReplyDeletePlease disregard the above posts. You DO NOT have to stop giving your precious ones breastmilk, even if they are allergic to dairy. You will just need to stop eating/drinking dairy products yourself. Slowly, the cows-milk protein that may be causing the issues will work out of your body and your baby will gradually get better. Breastmilk is ALWAYS best. You'll just need to change your personal eating habits to get the right stuff in it!
ReplyDeleteYes, Jennifer! I did mention that "I" stopped eating dairy so that the milk protein was no longer in my breastmilk. I ended up putting my little one on formula for other reasons NOT related to the milk allergy. All I was saying was that my little one COULD tolerate the soy (as some babies are allergic to both the dairy and soy) I was not telling her to stop giving her babies breastmilk!!!! My little one was a preemie and I KNOW first hand the importance of breast milk. easy there---no one was telling her to stop nursing. was just trying to offer a suggestion as to why her sweet baby boy was having unexplained blood in his stool.
ReplyDeleteI do realize that my first comment made it sound as if the soy formula made the blood in the stool disappear. Not what I meant...it was the removal of the dairy protien that made it go away. The soy formula was not added for many months later and I was stating that because not all babies have to be put on the expensive hypoallergenic formula (some do--let's face it!!) Some babies can tolerate a diet w/ soy .
ReplyDeleteOh, Heather - I am SO sorry that you are having to go through all of this torture! The LAST thing you should have to be worried about is the intelligence of the staff caring for your precious babies! I can't imagine how helpless you must feel - and, in my opinion, you are holding it together VERY well, considering! Keep strong and don't back down - you are being a GREAT mother to those babies!!!
ReplyDeleteHannah
Just a thought....Have you considered demanding that your sweet little ones be transfered to a different hospital? You and your babies should not have to be subjected to this substandard treatment. Tulane is not the only local hospital that is equipped for this type of treatment.
ReplyDeleteI'm about to make a trip to Tulane myself...this is ridiculous!
ReplyDeleteUm, I think I'd prefer Mary Louise uncooked... It is awful that they keep screwing up with the babies. Haven't they been through enough not to have to add medical error?!?!?!!!
ReplyDeleteUgh, 3 strikes they're out. Can you ask to be moved to Children's at Oschner? or come to Houston Medical Center...
I never said to stop breastfeeding either. I would never suggest something like that. If it is a dairy allergy, you would need someone like a nutritionist to teach you all of the foods that have dairy in it...like even french fries. I stopped breastfeeding due to a combination of the allergies and OTHER things, it was a personal decision.
ReplyDeleteI mostly just wanted to throw the idea out there because it really could be that "simple". Keep in mind it can take a few weeks as all the dairy gets out of his system. The blood occurs do to the damage that the dairy is doign to the intestines due to the allergy.
I am in tears for you! Sending many prayers your way. I wish I could say something to calm your fears, but there are no words. I would be LIVID!!! I know you are. No one takes care of your babies like you would. Unfortunately even a hospital/NICU unit. It's a shame. I am praying for all of you!!
ReplyDeleteThe idea that these babies are expressing any kind of a dietary dairy allergy at this point is a little far fetched. Without going into in depth immunology, the antibodies in their little bodies are still likely predominantly from Heather. It takes a few months for a (healthy, full term) baby to make their own. Unless Heather has a history of such an allergy, the food issue is out. One thing you do want them to be checking for, Heather, is ischemic bowel disease or intusseception (somehow I think you're already on top of this). As for the breastfeeding bickering, chill people. It's a personal choice. Militant, aggressive commentary on either parties' part doesn't do much other than hurt your case. Do what you and your doctor have discussed as is best for your baby. Period.
ReplyDeleteDon't know what's going on with Tulane. I blame it on post-Katrina affects. I just met their old neonatologist (who was let go post-storm). She's fabulous!
My little man was diagnosed with a dairy allergy at 6 wks old.
ReplyDeleteOh and I'm not allergic to dairy. The possibilities are endless but I wanted to put the allergy out there because that is what happened in my case and I had never heard of it before...especially with the only symptom being bloody stools. I don't think it's far fetched
ReplyDeletemy daughter was also diagnosed w/ her dairy allergy at 6 wks old!!! AND she was 4 weeks premature. She also only had blood in her stools...no other symptoms. You never know...it doesn't hurt to be informed and to have the information to take to the dr's. You have to be your child's advocate--no one can care for them like a mommy or daddy!!!!
ReplyDelete