What can i do?

When Emery was born premature i had many people who didnt know how to act around us, or what to say to us.... Well i have compiled some ideas of things you can do to help or say to a family that has recently had a preemie..

- Say Congrats, it may seem quite simple but many people forget, Remember although are baby was born smaller and most likely not so healthy, this is still an amazing moment for us and we are Happy!

- If they have other kids, ask if you can take them out for the day so mom and dad can relax a bit and also most young children cant come into the NICU, so finding time to go to the Nicu with other children can be tough.

- Make some dinners for them, casseroles are awesome. Something they can reheat and not have to worry about remember anything is better then hospital food!!!

- Ask if you can help them with laundry, When Emery was in the hospital we were only home to sleep and eat(on occasion) so the chores piled up, we had to catch up on 6 weeks worth of laundry!! Even doing one load for them can be such a blessing.

- Do not get mad if they do not return your phonecalls or emails, this time is very difficult it is filled with so many emotions, and it is hard to get back to all the people who are wondering how everything is.

- Or volunteer to send out a mass email or text for them with some details.. "Hi this is so and so paula and j would like you to know that Emery is doing well , they have increased her feeds and she has even gained a few ounces, please keep baby Emery in your prayers!" something like that!

- Put together a NICU gift basket.. include some things like lotion(frequent handwashing for weeks on end ugh), A comfy pillow (those hospital chairs get stiff), Nursing pads for mama, some soft blankets for baby... there are so many things you can add and you can get many of these things from the dollar store! It doesnt have to be expensive or big just shows that you care!

- Remember that Dad is just as effected by this as mom is, i think many people forgot this with my husband..

- Most of all just be there to lend a helping hand, a few kind words.. and a Prayer.

Preemie mommies feel free to add more in the comments!

9 month check up

( Im pretty sure i have a senior picture where im striking this exact pose lol)

Emery had her 9 month well baby yesterday she ways a big 18 lbs even and she is 27.5 inches MY oh My has she grown! The doctor noticed that Emery's right eye turns inwards its a condition called esotropia and she may need glasses, we have to wait for her appointment with the eye doctor to be sure but either way.. I think she would look cute in glasses! He checked her ears and there was no fluid so the amoxicillian a few weeks ago did its job yay!
I will be back later with a better post...hopefully

could it be?

A few weeks ago we took Emery to the dr for a fever which was a double ear infection, while we were there i asked her ped to bump up our dosage of zantac for her reflux which he did we also discussed switching medicines if the new dosage didnt help. Well since the NICU i have always been afraid of giving emery medicine dont ask, i also dont like taking medicine. Anyways since she was on the penicillian i figured i would wait till she was done with the antibiotics before giving the zantac again...10 days later and i realized emery hadnt had a wet burp or spit up at all in those 10 days.. now 3 weeks later and still her horrible gas is gone, she hasnt been spiting up she stopped arching her back while feeding! Im shocked could it be her reflux has finally went away!!! I am so happy. I am hoping this isnt some crazy fluke and that it has finally gone away for her sake reflux sucked!

In other news the reflux may be gone but the teething is bad, she hasnt cut any teeth but her gums feel very lumpy thank the lord for hylands teething tablets and sophie the giraffe.. because without those 2 products emery would be a very grumpy young lady...
well im off to sleep now that emery is finally asleep and ill update later with some awesome new pictures

sleeping

has become non-existant as of lately.. One day Emery will be her normal amazing sleeper self.. like the other day when she went to bed at 6:30 pm woke up at 4 am for a bottle and then slept until 10:15 am..then there are days like this where she wants nothing to do with sleep

Fell asleep around 9pm woke up at 1:45 am it is now 2:39 am and she has had a bottle and is now being rocked and is still wide awake...

It is so unlike her to have such terrible sleep patterns, hopefully it passes just as quickly as it came.
It sucks because since j has to work early im always the one up with her and it seems i get less sleep then him as of late.

Cloth diapering has been going great, I am seriously happy about making the choice to switch. I love seeing her little booty all fluffy! Plus i think she likes them better they are extremely soft so im sure it would be amazing. I am now pretty much addicted to cloth diapers and spend way to much time reading about the different kinds, looking at new ones i want and looking at what accesories i need. There are still a few things.

On to other things, Emery is so close to crawling i keep saying this but i just feel like it will come any day now.. Her new accomplishment is scooting her but further and further down in her bouncer until it touches the floor and she is sitting then she rolls herself over on to her belly and plays.. She is crazy ! It is histerical to watch but also nervewracking. I used to be able to let her sit in her bouncer while i used the bathroom or got chores done.. Not anymore.. I know your saying "what about the harness? Strap her in?" Well you see i would do that, i have tried that and it leads to Screaming and thrashing around turning herself sideways and just a big struggle. I figure since she isnt hurting herself pushing herself out and Im always around her, even if im in the bathroom i can hear her and anywhere else in the house i can see her from.

Her newest obsession is her feet! She has been trying to reach them for a few weeks now but just last week figured out how to get them easily and now she is constantly doing it. In her bouncer, in the bathtub (picture attached), in her car seat, on the floor, during diaper changes(which actually helps) its cute as hell.

I have been pretty homesick lately..summer was always so awesome in ohio. Everyone had cookouts the family was always together doing something or another.My family is unlike any other, and i honestly mean that. They are crazy and wild and always know how to have fun. I just miss being able to be crazy with them. I can tell J misses them too..
Emery has her high risk infant check up on monday at the hospital where she stayed in the Nicu... It is her 6 month (corrected age) check up. I will let you all know how it goes. Im excited but also nervous for that drive ugh... I hate driving there even as a passenger (which is honestly worse) speaking of my driving anxiety i finally made an apt for myself a few weeks ago July 20th.. Hopefully that goes good! Anyways it is 2:50 emery is still WIDE AWAKE! here is hoping i can manage to get at least 4 hours of sleep tonight.

My little fighter

Emery has proven from the moment she entered this world that she was a litle fighter (gets that from her daddie)

Yesterday she had a bad fever, and i got her into see the doctor today..
she has an infection her cheeks are red and puffy and so are her eyes. She has fluid in her ears and a tiny bit in her lungs. We were given Amoxicillin and while we were there they bumped up our zantac (yay). The dr seemed a little concerened stating that if things progressed to bring her in tomorrow that way she can be evaluated further.

I hate not being able to just make her better, i cant feel her pain, all i can feel is the heat radiating off of her from the high fever. I am sitting in the living room bouncing her in her bouncer while she sleeps (her favorite way to fall asleep)
She is trully my inspiration, my little hero. I never knew that the biggest most inspiring thing in my life would be a 3 lb 12 oz little girl.

I hope she recovers quickly , because although i know she could handle another hospital stay
Im just not sure if i could. Im not as strong as her.

Awake

I am up
Wide awake
because Emery has a fever of 101.6

It is always scary when something is wrong with your child no matter there age, i remember being 16 with pink eye in both eyes, and my mom bringing me home anything to make it better and my dad staying home from his odd jobs to be with me..

When Emery shows any signs of illness i immediately go in to panic mode!
Whats wrong? how? why? when? what do i do?
I read all these books about the ages and what constitutes as a fever
But, do i go by corrected or actual for temperature, or do i meet somewhere in the middle
There is no book that comes with having a preemie, no one to tell you exactly what to do in a particular situation..
Sometimes i feel a tremendous amount of guilt over having her so early, I even have dreams or well nightmares about it..Why was my body incapable of holding her for 40 weeks? Why didn't i just go to the doctors even when they told me i wasn't in labor and i just KNEW i was ?
WHY WHY WHY?

I have so many questions and no answers, i suppose i will never get the answers.
But maybe that is what God wants..
He wanted to show us a miracle in the shape of a 3lb baby girl.

So now i am up cherishing my miracle, wondering , worrying.. about everything.

I hope this fever breaks and that we dont need to do another hospital stay
I don't think J or I could handle another hospital stay.. and i dont want to see emery hooked up to a monitor for a long long time.

Thanks Doc

Originally posted on 4/24/09
Yesterday Emery had her 6 month check up, j and i were starting to become more and more concerened with Emery's gas problem lately, Emery always has gas , yes i know all babies do but hers is horrible, she will scream from it and oh i just feel so bad, we have to give her gas drops after every bottle, and if we didnt give those it would be SOOO much worse. She always spits up too, after every bottle, we have changed her formula numerous times, we cant give her the special preemie formula because its way to hard on her tummy. She is on gasease formula and it helps but its still bad...

Anyways we brought the gas up to Dr. Piccone the best doctor ever, and he was a little concerened that at 6 months she still had bad gas, but then when we brought up the spitting up he decided that she needs to try zantac. yes the heartburn medicine.. In the NICU they thought she may have GERD, its gastro reflux disease, now im pretty sure she does. Dr. piccone told us it may be up to a week before we saw a difference but no joke after the first dose i noticed a difference it was the very first time i had fed her and she didnt spit up.. then the gas she had was super minimal. When i gave her the 2nd dose same thing NO SPIT UP.. I WAS SOO EXCITED and i still am. I cant explain how good it feels to know she isnt in agony and to not have to worry about her spitting up after each feeding. I am so glad that we have such a great doctor, considering we have military insurance and we have to be seen at the naval hospital its rare to get a really awesome doctor. We met him when Emery had to go back to the hospital in january when they thought she had RSV, turned out to be bronchiolitis, Dr. Piccone is the High risk infant pediatrician, until then she had a different doctor that i didnt like because he wasnt the one the nicu wanted us to have. So after that, i started making her appts with him, he is so awesome he remembers her name and he is very sweet and he isnt one of those doctors that just comes in does the check up then RUSHES out of the room, which i love because i cant stand doctors like that. He sits down with us shows us her percentiles for full term babies her age and then preemies her age and so on.. Im just happy , that he decided to try this medicine..

anyways, then while we were waiting in the pharmacy for her medicine, our pharmacy is in the hospital, it often reminds me of a meat counter you take a ticket and then you sit there and wait for your number its like bingo.. they have 12 counters all calling different numbers.. Your like YES MY TICKET IS UP!!!!! so iin the pharmacy another woman and her husband sit next to us with their baby who is the same size as emery. She leans over looks at emery asleep in her car seat and says aw shes 4 months right.. I say no, shes 6 mo her eyes looked like they were going to bulge out of her head, which made me laugh.. Wow she is, um, just smaller then my son Then i say ya well she is preemie so yep she is a bit smaller! oohh.. Then our number was called and she didnt have time to sprout into her 21 questions that im absolutely sure she had.. lol i dont mind answering peoples questions, but sometimes i just dont want to, espeically when my anxiety is kicking in , in a pharmacy filled with 60 people all within ear shot from you telling your story.. no thanks not interested..

Anyways i will leave you with a few pictures, from the beach the other day , Emery and I went with her nicu roomate, MARK.. he is 5 days older then her and he was born at about 31 weeks, but was the same weight as Emery was, and they were in the same room together and she was always just a couple days behind him, even getting discharged, His mother and i have become extremely close and we get together alot .. so here our some pictures of Emery and her nicu friend Mark..

Getting Adjusted

Originally posted on 12/30/08
Emery had her first weight check which i think i covered in the last one. So she was 6lbs 3 oz as of 2 days after she was discharged so the 15th of december. So, gosh these blogs will become easier once im caught up with the current so anyways here it goes im just gonna say it all. So the first week home was pretty chill she wasnt crying much because shes still not even supposed to be here so she was pretty quiet. Everyone just says were so lucky, but i knew it was coming. So a week from her 1st weigh in we had her 2 month well baby visit although techincally shes 2 months today they just didnt want me to have to come in again in a few days so they did it last monday when she needed her 3rd dose of Synagis (RSV vaccination) So i wish we would have known that they were gonna do her 2 month well baby check up because i would have given her baby tylenol before, She got so many shots, and the Hep b one i know makes her sick, She got a small fever from the shots, so once we got home i gave her barely any tylenol i think it was .04 ml lol, because on the bottle they didnt even have how much to give for babies under 12 pounds lol. so i just did some math in my head and came to the conclusion that that was about right. It helped her alot, her fever went down and she slept for a few hours and got some good rest. Thank the lord for baby tylenol. Also at her last appt she weighed 7lbs 5oz, wow, so im sure shes about 8 as of today but i dont have a scale, for my own personal reasons lol. I was shocked that shes putting on weight so good, the doctor was so pleased that they dont even need to see Emery again until her 4 month well baby check up. I was pretty happy to hear that, since im just well REALLY REALLY SICK OF HOSPITALS.
Christmas went great, since she really doesnt understand it we just put most of her little gifts in her stocking, by the way you can get alot of AWESOME baby stuff at the dollar stores. We got a baby bathing suit for her, a cap and mitten set, wipes, a cleveland Cavaliers bib (GO CAVS!!!) A blanket thats really cute and couple other things. The dollar store is an awesome place especially with the economy the way it is. I even picked up my thank you cards from there.

Anyways, since we didnt go out of town it was just us three celebrating christmas we made ham, and green bean casserole and yams and a bunch of other stuff. It was great, unfortunatly i can not stand leftovers, so the leftovers kinda went to waste .
So now that kinda brings us to today, well the last couple of nights, emery has absolutely refused to sleep in her bassinet in our bedroom, she loves the bassinet that is in our living room, its attatched to the pack n play, but thats to big to put in our room. So shes been sleeping in our bed with us. She usually sleeps on our chests or i put her right next to me, If anyone is scared to do this because your worried you will roll over on them, trust me your instincts kick in and you just know they are there, but i also have these little triangle blocks that keep her from rolling, and me from rolling into her there neat. There pretty cheap too, our was secondhand. Once upon a child, is a great place to get secondhand stuff for good price. Anyways so now were trying to transition her to her own bedroom with her nice crib and stuff, but shes not liking it she just screams and cries for no reason i really dont know what to do, so i take her out and my husband says she'll never learn if i spoil her but oh well. Anyways tomorrow is New years Eve so i probably wont write but i will try and fill people in as things happen. Anyways SEE YA NEXT YEAR. Happy New Years guys!!!. And thank you for all of your support. Oh yea im going to enclose a picture of Emery along with my friends baby AlabamaRose Marie, Alabama is only 5 days older then Emery wait until you see there size difference because of Emery being premature, I just took the picture 2 days ago.

The Nicu (Where we lived for 7 weeks)

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originally posted on 12/22/08
First 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