Babies with Extended Hospital Stays

Wow, I really feel your pain! Our baby born Jan 22, 2010 was at childrens for 4 months. He was premature but had a longer than usual need for oxygen(at term he still needed it) the Dr.s at childrens could not figure out his problem and kept attributing it to "premature lungs". After much head butting with arrogant Dr.s, at my insistance, a chest x-ray was performed and it turned out our baby had a diaphragmatic hernia(Intestine and liver up in the chest due to defect in the diaphragm) Voila!!! no wonder our baby needed help breathing.
If I were you I would do my own research and press the Neo's to "figure it out or find someone who can"! About your toddler at home,just continue to balance your life, take turns with your husband making visits to children's and DO NOT feel guilty,you're doing the best you can!! As you can tell, we had a rather negative experience at children's. Ask your hometown Doc if you could give the new UofM Amplatz childrens hospital and clinics a try in the future if ever needed. I hope your baby gets better!!!!

I don't have a similar experience, but your story tore my heart out.
Why won't they let her eat? Is it an issue that she can't process food and it would be life threatening to feed her, even if it was by a tube?

You need to be an advocate for her. At 22 months, your son will be fine if you're not right there with him. He will not remember your absence at this age. If something were to happen to her while you weren't present, you would feel like you could have done something to help her.

Ask questions and do research of your own. Doctors are not perfect and they're not gods. Have you ever seen the show "Mystery Diagnosis"? Most of the children that have rare and life threatening illnesses are diagnosed because their parents loudly advocated for them, rather than taking what the doctors say at face value.

i went through something similar with my son he was born with a pretty bad condition called hydrops so he was in the nicu for 40days. it almost tore my husband and me apart, because every waking minute i was there. its stressful when they dont know whats wrong and i cant even imagine how you feel having a young child at home. all i can say is keep your spirits up and keep praying! because miracles do happen!

Just wanted to make sure that the doctors checked/looked for Celiac disease.

She could also be severely allergic or even intolerant to certain foods and is getting sick because she's getting those particular foods through your breastmilk (meaning you're eating the foods that her body can't handle).

You state she has no problem tolerating breastmilk, it's when the food gets into the intestines that she starts having issues. That points to the fact that it's food related. Unfortuantly, I don't have a lot of faith in conventional medicine finding problems/causes of food issues. I had to see a naturopathic doctor/alternative medicine when I was 40 years old, which was when I finally learned I had casein allergy (to cow's milk and cow products) and was severely intolerant of gluten and soy. No wonder I was so sick all my life and had asthma!!

Now that I don't eat cow products, my asthma is COMPLETELY gone! And now that I don't eat soy and gluten, all my other mysterious ailments have also gone away. However, unless you get a doctor who will do an Elisa/RAST(?) test, you won't probably find out much. Conventional doctors/medical community don't believe that food can cause issues with the body, so they poo-pooh anything having to do with a link with food and issues/problems.

I had to go the alternative medicine route to find out my issues, which also included heavy metal toxicity, severe malabsorption, severe deficiencies in vitamins, minerals, enzymes, amino acids, etc. I found out spring 2010 I had a virus that was hiding in my body, and fall 2010 I discovered I have moderate adrenal fatigue. Not finding food issues will lead to a lifetime of health problems and issues. Mine lead me to taking 12 different pharmaceutical drugs. I'm now off all pharma drugs except for one for high blood pressure, and I'm working on getting off that one too.

By the way, babies can be born with heavy metal toxicity. I had my daughter tested when she was 8 years old, and she was more toxic/poisoned than me, who has 32 years on her for living. Conventional medicine doesn't believe in this; I have no idea if they would even test for this. A naturopathic doctor will. The test is simple and very inexpensive.

I think it's absolutely awful that they won't allow her to eat. Do they at least have an IV line in so that she doesn't become dehydrated?

You have to be an advocate for your daughter. I'm not sure how much you can push for certain tests with the allopathic community, since they only have certain tests/labs they can do, but if the doctors are truly at a loss as to what is making your baby so sick, I would suggest the Elisa/RAST(?) test and see if they would be amendable to doing it, even if they, gasp!, have to have an Integrative Medicine doctor perform it/send it out to the lab. Most conventional doctors/hospitals do believe in Integrative Medicine. I don't know if Children's Hospital does, but I would definitely look into food allergy/intolerances if she were my daughter.

My prayers are with you and your daughter. I hope they find the reason soon.

Hi - I'm so sorry you and your new baby are going through this. My daughter (now grown) was hospitalized several times as a young child for various surgeries. Because we didn't have any other children at the time, my husband and I were both able to be there with her 24/7. I don't honestly know what I would have done if I had another little one at home - I certainly would have felt torn, but I think my instinct would have been to stay with the baby, as long as you are comfortable and confident in whomever you have taking care of your son. You and your husband should try to work out a schedule where you can switch off as much as possible to give the other a break. Staying full-time at the hospital is extremely stressful and mentally, emotionally and physically draining - try as best you can to share the hospital time so neither of you gets burnt out. My heart goes out to you and your young family - I can only imagine the strain you are all under. I will pray for a good outcome for your little one, and strength for all of you to get through this.

I am so sorry your family and daughter is going through this. Sometimes it is hard to find the diagnosis and sometimes the diagnosis is never made or made later when she presents with additional symptoms that help identify the diagnosis. It's sounds like you don't really understand what they think is wrong and the steps they are taking to try to find the diagnosis. You need to write down your questions as you think of them. It sounds like you need a meeting with the doctors so they can explain what they have done and what the plans are. These meetings are overwhelming and you won't remember everything they said, so keep asking questions. If they can't keep IVs in (which is common with babies) and they are unable to get a PICC line in (which can happen depending on her veins and hydration status), she may need a cutdown or a surgically placed line. Hopefully they have her on TPN, which is liquid nutrition that goes in the veins. If so, they are not "starving" her. She may still feel her tummy is empty. You need to understand what the doctor's plan is if they can't make a diagnosis. They will have to treat her symptoms. Cases where there is no diagnosis are hard on everyone, the family, the child, and the nursing & medical teams. Likely you are going to have to stay with your daughter and have your husband be with your son. You will feel guilty, but you have no reason to feel guilty (doesn't seem to make the guilt go away though). This is the time to call in favors from family & friends. Your family needs support. People are often willing to help, but don't know how. So tell them what you want/need. All the best! Keep asking questions until you understand what is going on. Remember this is hard on the doctors too (not in the same way as it's hard on you). They went into medicine to help people. It's very frustrating to not be able to figure it out. Often you feel like you have let down the patient and family. Unfortunately these difficult situations are part of life. Everyone has to keep trying to do their best for your little girl.

I've always assumed Childrens is one of the best in MN, but maybe it's time for you to find out for sure. Ask the Dr's what the plan for her is and if there is a better place for her. Is the U of M better? Mayo? Keep pushing them. This isn't time to play nice.

Your son will be ok without you, a month seems like a long time but the mother/son bond is strong enough to withstand a little separation.

Can you take advantage of the new ronald mcdonald house in the Childrens Hospital? Then you could be closer to your son and baby.
http://www.childrensmn.org/services/ronaldmcdonaldhouse/

I'm so sorry, it really does sound like a rare disease. I truly hope something can be done for her. They can't get a picc line and are doing new ivs every few hours? What is wrong with the medical staff there, it doesn't sound right. how can she be starved for that long, do they have a gameplan on letting her eat?

You certainly need to have someone there as often as possible. Dad can stay home with your son, and you guys can switch off where he is at the hospital and you go home for rest with your son. Do you have a family member who can go for a while when you both need to be home? My sister's newborn was in nicu for over a month and they just had to rotate, but she had to go and stay home with her other children at times too, as well as to rest. You can't be as strong for her or the situation if you aren't getting rest and taking care of yourself also.. It's difficult, I know. Your family is in my prayers.

I don't have much experience with anything like this but I had to go back in the hospital for an infection after my second child. My almost 3 year old was fine with my husband but he did come visit me when they could so I would say to try to see him every now and then when you can. The main thing is that your newborn really needs you now so that should be where you focus your main energy. I wish you much luck and you and your family will be in my prayers.

I am so sorry they still haven't figured this out. Your son will be ok with out you there and just dad for now. You need to be there to advocate for your baby girl. Doctors can often times be wrong and miss things. Fight for her, keep looking online for groups/sites that can give you more ideas/information. be sure to bring up any idea to her doctors. I have seen it many times where they just didn't think of that and it turns out to be the case. Don't give up. Ask what their plan is for feeding her, why are they not giving her anything, etc. Don't be afraid to argue with a doctor if you feel something isn't right!

No, I am sorry I don't have experience with this. But keep looking for groups or sites out there. I'm sure you'll be able to find some help from many others who have had to endure something similar.

Good luck, I hope they find something out about your little girl.