NICU Problems

Hi,
My twins were born at 36 weeks. My son was doing okay but started having problems breathing. They took him to NICU and it was very devistating for me. He weighed 6 pounds 12 ounces, he had tubes and monitors, ect. My daughter weighed 7 pounds 10 ounces and she was fine...however, 2 weeks after they were born they both ended up in the hospital for failure to thrive. I think sometimes our babies have a harder time coming into the world. But now my twins just turned 2 and they are doing fine. I will be praying for you.

1 mom found this helpful

A.,
My heart and prayers go out to you. Being a NICU parent can be totally frustrating and you feel so powerless. Our first son was born 6.2 weeks early and stayed in the NICU for 17 days and it was the longest of my life -- and the worst. You walk a fine line between wanting to defend your little one and staying out of the nurse's way. We did question the nurse's practices and went to the head nurse and then her boss. We wanted to take our guy out AMA but thought better against it. When our second was born early and needed oxygen at 4.5 weeks early, I knew how to handle it a lot better. I got a onsite pediatrician, and let each nurse know who came on that I had done this before and every decision was to be cleared with me first -- unless of course it was life threatening. As with the antibactirial stuff, we actually bought some for our home, and use it regularly - it is the best otu there and it doesn't dry the hands -- causing them to crack and then let in more infection. Our second son had to be on strong antibiotics for 48 hours due to what they thought was a lung infection -- they were wrong, and that is why they kept him -- then, once the had him, they impose stringent criteria for release.
My advice to you:know the criteria for release, is it after ther antibiotics are administered, does he have to be able to eat so much and gain a certain amount of weight? Luckily, both the hospitals that I had my kids in (On in WA and the other one at Boulder Foothills) had room in NICU's so I just stayed with the boys. But if you can't, just remembert, he will come home and try to make the best of a hard situation. Keep a daily journal: how much he weighed each day, milestones, if any (came off CPAP) smiled, had a bath, etc...take pictures -- my three year old loves to look at pictures of him with his brother at the hospital. And keeping the journal allows you to see the progress...which is the most important. Write down your feeling and thoughts, which are real and make sure that you don't slip into depression -- it is really common for NICU MOMS to get postpartum depression because you don't get as much contact with your baby, you are pumping all the time and it is just so hard.
If you need someone to talk to or need advice, please do not hesitate to contact me.
____@____.com
J.

1 mom found this helpful

I've been there a couple of times. My littlest was born at 25 weeks and was in the NICU for 13 weeks. He had been given antibiotics several different times while he was there. He is a healthy but small 14 year old now. After your son gets out, make sure you get some probiotics in him to help restore what the antibiotics took away. I wish I would have know about probiotics when my son was released. I also have a son born at 32 weeks that is now 19. The sooner he gets home the better for all of you. I know it seems that the whole weight of the world is resting on your shoulders but try to relax and let the doctors and nurses do their job. They've done this a few times. I'll say one for you.

Hi A., I just wanted to address the issue of the Necrotizing Enterocolitis or NEC as it is sometimes known. I am a nurse and although I have not worked in the NICU I seem to remember from my pediatric rotation that it is something fairly common in babies who are born prematurely.

Dear A.,

I see you have gotten many responses from many others who have also had preemies. My little boy was a 25 week preemie and had several issues, and was in the hospital for 5 1/2 months. The biggest issue for him was also the NEC, which your son has. If I were you, I WOULD NOT take him out of the hospital until that is resolved. My son ended up needing serious surgery due to that, and was saved because of the nurses and doctors who were there for him. If you take him home, the bacteria in his bowels could eat a hole right through them, and you wouldn't know until it's too late.

During the course of our boy's NICU stay, he spent time in two different hospitals (in Utah). At one hospital, we just used the sanitizer, and at the other hospital, we washed from hands to elbow and then used sanitizer as well. If you don't feel that the practices are healthy enough, as a parent you need to talk to someone in charge and ask about it. You are your child's number one advocate.

Also, did they tell you that his lung collapsed because of the CPAP pressure? They turn up the pressure because the baby's blood oxygen level is not high enough and because his lungs are not ventilating well. If you're still confused about something (I know I was confused about A LOT of things for a while), then be sure to ask until you understand.

You can always ask if they have a room where only your baby is instead of several (an isolation room). They did that for my son when they thought he had RSV, although he didn't; and sometimes they just have extra beds. Although it is more expensive for him to be in an isolation room, there won't be near as much people traffic in that area. Your son's weight is a bonus, and it will help him in his fight.

Finally, I know how hard it is to watch your son fight this battle. It's hard to be strong when you don't know where to get your strength, but you will find that you have more than you know! If you ever need to talk or have questions, please feel free to email me at ____@____.com'll keep you in our thoughts and prayers.

Dear God,

Keep your hands on this family as they go through this rough time. Please give the nurses and the doctors the guidence that they need in order for this little boy to go home healthy and happy. Let them know everyday that you are with them.

In Jesus Name,
Amen

Hi A.,

My heart goes out to you. My daugter who is now 4 was born 12 weeks early and spent 11 weeks in the NICU. It is extremely stressful on everyone. She was quite a bit younger than your son, however she was doing great. Then she contracted MRSA which is a staph infection in the lungs. We were told it is a "hospital" illness that most people are carriers but it affects those who are immune compromised, elderly, preemies etc.. I was upset at first, so I know how you feel. However, after meeting many families and nurses I realized this is very common for preemies. I remember them telling us for preemies it is "two steps forward and 1 step back." The NICU we were at sounds like they were stricter with hand washing, however if you feel the hospital you are at is not, talk to the nurses. Most of the nurses in the NICU are amazing, we still keep in touch with a couple of them now. Tell them your concerns and they will help you. The time our daughter spend in the NICU was like a roller coaster ride, some days better than others. We too had other children at home and that was an added stress. My best advice is to take one day at a time, and if that is too much, get through the morning, afternoon, etc..Your son is going to thrive and do great! I know it doesn't seem like it now but you will all make it through this. My thoughts and prayers are with you and your family and if you ever need a shoulder to vent to, cry on, or just talk please contact me.

I've had too many babies in the NICU. I feel your pain! The answer is yes and no. Anyone can get sick from things in the hospital - it's full of sick people! My husband is a nurse and the saying is, "If you're not sick when you come, you'll be sick before you leave." However, they really do try to minimize cross infections, and the NICU really is the best place for your little one right now. I know its hard to have one at home and one in the hospital! I'm sure you are exhausted! Try to get some sleep! Good luck!

My son was born 12 weeks early (exactly four years ago today!) and lived inthe NICU for about 25 days. I know how frustrating it is having your child living away from you and depending on others to provide care that would not compare to your care at home. However, after being able to look back at all the hiccups in the NICU, I was able to see I was not happy due to my own emptiness of not having my baby with me, frustration, fear, etc. I promise you people in the NICU are as specialized as they come. It may seem the NICU is not as careful about germs, etc. but their standards are very high. If you have questions or concerns about germs, etc. talk to the NICU supervisor and express your concerns. The couple things you have mentioned that your baby has contracted sound very normal to me and is mostly part of being preemie!! i wish you the very best and please trust these nurses are doing everything they can to help your baby. If you would ever like to talk about being the mother of a preemie, I would love to hear from you! God Bless you and yours!

Hi A., I will pray for you all. I am a nurse in adult ICU, but can't speak specifically to the little ones. But it sounds like you got some educated answers from NICU nurses or experienced parents in some of your other responses. As to the comment that the hospital is keeping your son there for revenue...I could scream! Sorry, but hospitals are there to help you, not out to get you! They are keeping your son because it is currently what he needs - right now it sounds like there is more going on than you could handle at home - and when he is ready to come home, they will work with you to make sure everything is in place to make his trip home successful! They days spent preparing to send a baby home are not designed for the hospital to get money - they want to make sure that everything is in place for you and your son so that he goes home and still has all his needs met, so that he is able to thirive at home and not end up with further complications.
Being a nurse, I know what there are many times when we are rushed, and may cut some corners to get things done quicker - unfortunately that is just the way it is. But overwhelmingly, nurses truly care for their patients and truly want what is best for them. I shudder at the comments posted that say that noone else cares for the health of you son. Yes, you are the most important advocate - and be strong in that! Ask for things that you think are needed but don't see being done. But those working for your son DO care about his health, and are working for the best for him. For the best possible outcome, this must be a team approach between you and the hosptial and medical staff. If you begin to see it as you against them, you won't make progress in advocating for his care. And the hospital and medical staff should want to work with you, and want you to be involved in his care. If some individuals don't, then find the ones that do and invest in your relationship with them.
Yes, there are risks to being in the hospital, but you also need to have confidence that if the NICU is what he needs right now, than for right now that is the best thing for him. And when he doesn't need that high level of care anymore, then the best thing will be for him to be back in a loving home with you! I hope and pray for the best for all of you!
S.

Lovey,
I believe that you are right. That is alot for a new immune system to take. I personally use Taheboe, which is a natural ingredient, to build my childrens immune system. Even my baby. Hope that helps. Feel free to write back.

Hi A.,
I am no expert for sure so please take my thoughts as merely suggestions. My second daughter was in the NICU for only a week but we were required to thoroughly scrub our hands and wrists with a brush in a secure room while being watched on camera by a nurse before we could even enter the NICU. Only parents were allowed and they had very strict rules on how many people were in the NICU at a time. My daughter did well.
In contrast, my brother's twins were in a different NICU. They were early and very small 4-5 lbs. They had to be tube fed. After about 4 days they both started losing weight and not doing as well. My sister-in-law stayed with them and realized that the nurses were just too overloaded and she didn't feel like they were caring properly for her twins. She then opted to take them home and tube feed them herself. They thrived immediatley once they were home.
Every situation is different. But I just wanted to share these experiences with you to reassure you that you have valid concerns. Talk to your Doctor immediately and be forceful with your concerns. You should have nothing but the highest of expectations for anyone who is caring for your child, especially a medical facility. Don't let up. Maybe ask about the option of isolating him from the other babies or moving him to another facility.
My thoughts are with you. Take care,
B.

A., my prayers are with you! Our first son was 14 weeks early and he was ok at first then it seemed that if one thing went right 4 went wrong. He lived for three days with much of everything a minute to minute situation. The last day was the worst they wanted to help him but he was soo tiny and not strong enough to keep fighting so with a heavy heart we let him go to the heavens and he is our guardian angel. Our second son was born 7 weeks early with much of the same concerns. He was 4lbs 3oz. so he was tiny but strong. He went through oxygen, weight and body heat issues like a champ. He didn't develop any infections but it is always a possibilty with preemies because they have to work 2 sometimes 3 times as hard to do something as simple as brreathing. The NICU at Swedish was awesome. You had to be super clean to get into any part of the area where the babies were. I am not sure which hospital your little man is in but I would voice concerns to the hospital admin or floor head nurse so they know what might be making your baby and any other baby sick in the NICU. Sorry so long but I have been there and it is awful when they are so tiny and you feel helpless. Let me know how it goes. If you need to talk just send an email.
Take care, M.
P.S. My little boy is now 13 almost 5'5 and 150lbs. You would never know he was a preemie. =)

You need to know that the hospital and doctors want your child to stay in NICU because it is revenue for them. I had a placenta abruption and then got DIC and I was fighting for my life and they took my baby and put her in NICU and I could not see her. After I got out of the hospital I tried everything to get my baby released. She was doing great. She was on oxegen. I was trying to heal myself but they insisted that we had to go through all these things to "prove" we could take care of her at home. This was my 10th child and I knew how to take care of her. We had to stay at the hospital in a little room for 2 days and prove that I could nurse her. That we could handle the oxegen tank, etc. etc. Every time we would do something they would come up with another excuse not to release her. I knew in my heart I just needed to get her home and we could both get better. I was totally right! Once we got home we both were great. Do what you think you should do--you are the Mom. I would do everything you can to get your baby home as soon as possible or otherwise when your baby is doing better they will have another excuse to keep your baby in the hospital.

A.,
As a mom of two preemies, I know how scary and confusing the NICU experience can be. I found that connecting with other preemie parents made me feel not so alone and they were wonderful in sharing their experiences. Try this preemie support group website: https://www.inspire.com/groups/preemie/
I wish you and your family well and send strength and patience your way.

I am sorry that I don't have any answers, but know that I will keep you and your family in my prayers!!!

Prayers for sure! I would say the NICU is probably the most germ free environment in a hospital, or so I would hope!
Babies come out and have little way to fight off anything that may be in the air, ventilation system or even something he came out with that is now developing. You can have a cold two days before symptoms show up and someone not even realize. However it shouldn't be happneing in a NICU!
If YOU SEE them not washing hands or using sanitizer, go straight to the hospital head and demand why and that they do!!!!! That has to be essential and I am shocked to hear they don't!!! I would think nobody should be in the NICU without proper clothing protectors, scrubbing hands and then even gloves and masks. Your child getting sick if that is the case is on them and you should raise some hell!!!!!!!!
God is watching over you and I will send you hugs and prayers right away! Good luck and God Bless!

My first was born at 34 weeks. She weighed 4.5 pounds and was 5 pounds when relaesed a week later. She had eating issues and was jonduce. she wasn't actually admitted until the second day of life. At anyrate, I have other riends with babies born at the same weight or at the same five weeks early or more. They had terrible issues with having the baby thrive. In the end, with more time in the hospital, they were released. I do know that ours was small but had a full washing area with directions to wash up to the elbow and masks available in front of the unit. but I would speak up if you don't feel you are getting the care you need...or see if he can be moved to a Children's hospital. You have the riht to demand he be put in issolation and only limit the visits. Make sure you touch him A LOT! Get him naked and pull open your shirt and have him lay skin to skin with you and your husband as much as possible. good luck and stay positive. Visuallize taking him home healthy and strong and give him that. give him your positive vibes and love.

As an PICU (formerly NICU) nurse, I can tell you that this is very common. Not to minimize it whatsoever. When they make their first entrance into the world, from their safe, warm world in your tummy, they seem very healty. Then they are exposed to EVERYTHING in our world. The problems (meningitis, etc.) which your sweet boy is experiencing are most likely not nosocomial infections. Meaning that he didn't get it through contact at the hospital. His little system is having to deal with all of the tough things our environment throws at us. My thoughts and well wishes are with you!

I am so sorry you are having this problem. My own little guy was in the NICU for 3 1/2 weeks. He was not early, but needed surgery as soon as he was born. 3 days old and he was almost ready to go home, when he got RSV...from the HOSPITAL, his right lung collapsed and it took them 5 days to figure out he had a mild form of RSV, how many other babies were infected before mine was put into isolation? For us it was a blessing, because 3 days later, the nurse discovered a problem that was due to his first surgery and it would have taken me a while longer to figure it out. It was nothing life threatening, but needed a corrective surgery. He is now 19 months old and has had 16 surgeries(most where planned...all but 5) and is heading into another one next week.

Unfortunately, there is nothing you can do. After the RSV thing, my mom came and stayed with my older kids, and I practically lived at the hospital. I made sure the nurses did their job and that all the tests that needed to be done got done. If I had not I would never have gotten him out of their when I did. It is starting into RSV season again. Do all that you can to keep him healthy and get him OUT. No hospital is clean and germ free. I was at Primary Children's and if you ask anybody, they claim it to be the best in the region. But if this is the best, honestly, I would hate to see any worse. And I know there are WAY better ones out there.

Good luck and keep on top of what the hospital does, they aren't perfect, and most nurses I met, don't do their job like they are trained and know they should...like washing from fingernail to elbow for a full 3 minutes and then using the antibacterial between each baby, sick or not!

As a mom, you can do what ever you feel is right for your son, just remember it's about him, not you. I was very careful about who touched my kid, it seems everybody wants to have their input. I learned I could turn some people away, or I hovered enough to keep them all in line.

It is very hard to leave your child in the hospital, it's awful, I cried every day as I drove the 45 min home. Take one day at a time, and talk to everybody and learn all you can, it helps them see that you are not a push over mom. You have to be assertive (something I was not before he was born).

Good luck

Hi A.:
I too had a son at 31 weeks and he ended up getting sick at 4 weeks old with the NEC infection. It is very scary and I just want to encourage you that most NICU are the very best place for your baby. I did not see my son for the first 24 hours and I was mad and sad. I grew to love my sons nurses as if they were extra members of my family. They are saving our babies and loving them for us. As Things got worse one night I so wanted to hold my son when he was on a ventilator and a very special nurse reminded me that he was not even suppose to be out of my womb yet. That him being quiet and resting was one of the best things for him. I learned alot during my days as a NICU mom which was 8 weeks long and we did go to children's for 10 days. It was long and hard , but my son is now 8 in just 3 weeks and he is a ball of fire.
Try to find some encouraging positive moms and I say that because some moms will with good intentions be negative. I know because I accidently did that with a friend. I had some very special friends who gave me positive support. One came in every day and video tape David for his journey through live. What a great way to remind us how special and what a miracle God gave us. He is my miracle and I know you will make it through. Trust your nurses. Keep a good line of communication open and then you have someone to go to if one nurse does get out of line. We had it happen, but we spoke to one of our favorites and she helped fix it.
My prayers are with you,
M.
If you want to email feel free to check out my profile.

My twins were 8 weeks early and spent 5 fives in the NICU. My son was quite large for his age (5 pounds), but still had the most problems. The doctors and nurses said boys tend to struggle more than girls in these situations. They also said in the case of twins, the larger one tends to struggle more - he didn't have to fight as much in the womb for his food as my tiny daughter did.

Having a baby (or two) in the NICU is a roller coaster - some days will be great, but others won't be since there are almost always setbacks. Talk to the other moms there, they really understand what you're going through because they are going through it too. I will always treasure the friendships I developed there - they helped me get through everything.

The hand sanitizer at the hospitals is the best, I wouldn't worry about that. We love it so much that we use it at home.

Trust the nurses and doctors, but be sure to ask lots of questions so you can understand what is going on. The nurses are your best resource - they are amazing!

First I would like to send you my prayers. This is always a tough situation. I send my love and thought to you and your family.

Either way there is nothing you can do now. He cannot be taken out of the NICU now because he is so sick. Anything can happen and it is hard to say if it was caused by being in the NICU or if it was going to happen no matter what. I am not sure how much you are there with him, but if you watch and see them use the hand sanitizer than simply ask them to wash there hands before instead. Little preemies are so vulnerable to any kind of little bug in the air and they can catch things very easily. I would just pray and try to hang in there. Be glad that he is where doctors can help him and save his life. You could have taken him home thinking he was a healthy boy and things could have turned a different way. Hang in there and he is in my prayers. Please let me know what happens... HUGS.... J.

A.!
Hello there! I work as a nurse is a very busy NICU. Respiratory Distress is common in any baby who is born early and has nothing to do with their size. Because the baby is not supposed to be here yet, his lungs have not matured. The best thing to fix this is to give him the support he needs until his lungs grow and mature. Its not uncommon for a baby to go from CPAP to a ventilator. This is because we all keep a base amount of air in our lungs called a PEEP. When babies are little they do not have mature enough lungs to keep them open or keep that PEEP without help. So what we do is we will give them a try on CPAP and if that is just not helping enough, they have to move to a ventilator.

As far as infections. It is true that you can acquire infections in the hospital which is why most NICU's are very careful about hand washing and at our hospital we encourage parents to do the same. And to not visit when they are sick, etc. Sometimes babies are born with infections, which is one of the reasons he might have been born early. The body is smart and knows what it can handle and if something is not right in there it will signal to have the baby come! I can understand how you feel that things are getting worse, but the NICU and having a preemie is a total roller coaster!

I encourage you to ask more questions from the caregivers of your son and to look for support from other parents there or even online. March of Dimes has great info and support.

I wish you all the luck and hope your son gets better soon and goes home soon!