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originally posted on 12/22/08First off Id like to say thanks to everyone who has read my first blog, its very inspiring to know that others have been through what ive been through, and even people who just care. Thank you!
The NICU
The first time i walked in my heart was racing i didnt really look around i just wanted to see Emery. I was taken to the "Big room" It was a larger room in the way back of the Nicu which i was later told was where the most critical babies went. I came in, and was told to do a 3 minute scrub with this hot pink soap called HIBICLENS(still not sure on the pronunciation) and a scrub brush.. after 7 weeks of this my husband and i had to invest in some great lotion lol. After i scrubbed i took my first look around the "big room" , there was only one other baby, Mark is what the little blue and white sign on his Girrafe Isolette said. As soon as i arrived, more people surrounded me then i could imagine, My assigned social worker arrived, then a her pediatrician, and then her nurses. The most amazing thing was We had been given a house to live in on the hospital grounds so we didnt have to drive 80 miles everyday to see her. It is called the Fisher House, its sorta like ronald mcdonald house but for military families in times of need. That house was trully a blessing. Anyways. sorry for the side story. At first glance, the nicu is pretty scary, theres oxygen tanks, little oxygen masks, wires everywhere, monitors binging every 5 seconds.. My heart skipped a beat everytime i heard a monitor ring for the entire first week. Emery was very lucky for someone of her gestation, she was never on oxygen, very unusual. Honestly, i dont remember much of the first day because i was to in awe of her. I was shocked that they let me hold her she was so small so fragile we could only hold her for 20 minutes, because preemies can not hold there tempature. The isolette she was in called "The giraffe" is more like a space ship with the push of a button the entire top lifted off, and a heat lamp came out .. It was crazy, i found out the price on those bad boys about 40,000 dollars. Its like a baby beamer. lol.
Im gonna give a rundown of everything in the nicu real fast so that when i use the terms, i dont have to define what they are just incase some of you dont know... All of it was foreign to me at first.
The bili lights- the lights for jaundice, they put a little mask over the babies eyes. ill insert a picture .
A's B's and D's
No not a grading scale, Apnea, Bradycardia and Desat
Apnea is no breathing for a period of time usually about 10 or so seconds. The monitor dings for that.
Bradycardia, is the slowing of the heart, a typical baby heart rate is usually 140s to 160s give or take when they have a bradycardia, the monitor dings if the heart rate dips below 100, emerys lowest was 60.
Desat well im still not really sure on that one , but i know its not good, the monitor bings louder for b's then a's and for d's then b's but they usually all occur because of one another.
Pic line- normal iv's usually have to be replaced daily sometimes hourly, for reasons like veins being blown because there so little, and they pull them out. So a pic line is usually put in the thigh or arm and it goes in deeper and stays in for long amounts of time, to give medicines, nutrients, sugar, anything that would go in an IV. They make you sign for this because theres risk for Sepsis an infection basically.
AOP- apnea of prematurity usually doesnt go away till 34 weeks of gestation . sometimes as late as 42 weeks gestation
Gavage- tube that goes into the nube down the esophagus into the belly for feeding.
This is really all i can think of if i use something else ill remember to explain it.
On day 2 at the nicu the asked me if they could put a PIC line in, after they explained it i signed, she had already pulled 3 iv's out that day and her little veins were blown, they even placed one in her head. ya her head. they had started feeding her through the gavage only 4 ml a feeding which was every 3 hours crazy thats nothing.
Everyday they would increase her food by a little more first it was 4, the next day 6 then 8 then 12 etc. etc. when she was discharged she was on adlib feeds usually taking 60 to 100 ml so about 3 oz or so. every 3 to 4 hours..
All babies usually lose weight after birth emery lost 12 oz. she got down to 3 lbs, and that was scary. They needed her to gain weight so she was on my breast milk fortified with 24 cal human milk fortifier to help weight gain.
Everytime i came into the nicu the nurses and dr's were amazing always updating me with what was new that day. What tests were being done all that.
Most newborns have some jaundice and they get treated with bili lights it sorta looks like there getting a tan. Emery had to have a bili treatment 4 times before her jaundice was resolved. When she was having the treatment they were more strict about us holding her, it sucked but we knew it was for the best.. We could usually only hold her once a shift for about 20 - 30 minutes. I cant explain to you how horrible it felt to go out somewhere and see people with there newborns , getting to be a mom. I remember i kept saying to my husband, Im a mom , and no body would ever know. It made me sad that i couldnt be with her at all times especially since i was in class and my husband had to return to work.
The nicu understands that we can not be there 24/7 and they were always awesome about calling me if anything came up or if i wanted to know how she was i would call them and they would always update me.
about 2 weeks after she was born she was bumped from the "Big room" which now had about 6 occupants to one of the 8 smaller rooms that usually housed 2 babies. she was still in an isolette but i was not as hightech as the giraffe model, this one was smaller, no heat lamp just regular heat, and the top didnt lift off u had to work through 2 holes they only wanted u to open it if you were taking her out. But she was moved to the new room with her buddy mark from the big room they were 5 days apart, same gestational age and same weight and emery was always a few days behind him. She was now eating about 30 a feeding had no iv's just had to take caffeine orally to help lung stimulation. and poly visol a iron supplement vitamin thing orally to. and was still being fed through the gavage. Babies can not suck, swallow and breath all at the same time until about 34 weeks gestational age. They will usually choke. To help with this they let you do non nutritive breast feeding where you pump before and then let her suck and suck . or pacifier sucking.
On Thanksgiving we came in which was about 2 weeks later we came in and she was in an open crib. It was awesome, every step up is a step closer to graduation, and mark had been moved about 4 days prior. The open crib is small not a crib that your used to seeing. That same day they gave her , her first bottle, she choked a couple of times and didnt finsh all 40 ml, but she did pretty good for only being about 32 weeks gestation at that time. They had to give her the rest of that feeding and all the other ones through the gavage, we could only do a bottle or breast feed once a shift. so 2x a day. and the rest were gavage feedings. after she did good on that they let us increase it until she was finally on all bottle or breast feeds, she was eating more then i could pump so they had to start supplementing with formula, which made me really depressed i felt like i wasnt doing enough for her, but the nurses were really supportive telling me how hard it was to keep up production for so long by just pumping. Most women give up after a couple weeks. I continued to pump and give her what i could as they supplemented.
There are about 4 things the babies must have accomplished before getting discharge, and contrary to what people believe they do not have to be a certain weight.
1. They must be on all breast or bottle feeds
2. They must be off caffeine and have no A's B's or D's for 10 days prior to discharge this is called "Apnea watch"
3. They must be able to maintain there own tempature in an open crib.
4. They must be gaining weight.
Although some babies are discharged still on caffeine, and monitors and even sometimes on oxygen this is rare, and usually only occurs if the baby has been in past there original due date and the dr.s feel that he or she should be released.
Once she was on all feeds all we were waiting for was for her to be off caffeine and have no events, she was having 2 to 3 bradys a day, and sometimes a desat. but her AOP (Apnea of prematurity) was resolved. After 2 days of taking all of her feeds orally they took the gavage out. It was amazing.
The dr's were concerened though about a few things with emery, first off she was about 5 weeks old and her cord was still not completely off they thought it was a conditon where the tube from the bladder which goes through the umbilical cord so we recycle there waste when there in the womb did not detatch so urine was still being cycled through after about 2 tests they found out this was not the case which was great, because she was on day 4 of her apnea watch. It had already been started over once, and if she had to have surgery she would have to be in longer.
We still dont know why it stayed on, Its still on to this day a little bump. The other issue was that her crit ( red blood cell count) was really low it was in the low 20's usually this is due to anemia which is why most preemies are on the poly visol and iron forumulas once they are discharged. There crit has to drop low in order for their brain to know to make more but low 20's is really low and sometimes constitues for a blood transfusion. This worried me, i wanted her to have my blood, but they said they would have to do all sorts of tests and if they decided she needed the transfusion they would want to do it the same day. Luckily they decided not to do it.
Can i just explain to you guys for one minute about how much apnea watches suck, everytime you hear a monitor bing you look at the babies, and some bings are false alarms so your thinking omg omg omg, was that real, does this start over now?, why why why? Some moms would be in the room crying because they would be on there 4 or 5th watch. Luckily Emery only had 2 watches before discharge. They told us that we would not have her till her due date which was jan 10th 2009, i said no that is not so i will have her by xmas, lol. Low and behold she was discharged on december 13th. She was 6 weeks old, and 36 weeks gestational age. It was the most amazing thing.
Although, the nicu was scary we had are share off good and bad moments. You will not get along with every nurse, you will not always be happy with something they say, or want you to do. But they have the best interest in heart, and remember you can always chat with your assigned social worker, or assigned nurse practioner about what you would like. For example, we had a nurse that was very rude to me and my husband, they baby cried and she said it was because my husband was holding her, and ripped the baby out of his hands . Now im sorry but this was inappropriate. My husband was in tears he didnt understand what he did wrong. We politely asked our social worker if she would not be assigned to our baby, they asked us for our reason and once we explained she said that is fine, That nurse never had our baby again. We also had an amazing nurse named nicole we asked if she would be the primary meaning that when she worked she would always get emery. They usually rotate. She gladly accepted she loved Emery so much. It made me so happy to have nurses love her as much as we did. On the day of Emerys discharge Nicole gave us a bracelet that had her name on it in sterling silver block letter, with pearls and savorsky pink and purple crystal beads . Small enough for emery but big enough for her to wear till shes about 7. It was so sweet of her.
If i didnt address something in this that you have questions about or would like to know about feel free to ask because im sure i missed some things, everyone has questions, and trust me none of them are stupid. I actually want to become a speaker for the nicu do meetings with parents in the nicu once a week where they can all talk to eachother about there experiences, ask questions. Cry, smile, laugh all of that. I'm not exactly sure how to go about this but im gonna try.
In the next blog, i will talk about her first week home.
Having her off the monitors was more scary then having her on them.
Feel free to ask me questions, or leave comments. If you do not want them to appear, Here is my email Misspaulamaurine@yahoo.com
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