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I cannot stress enough the importance of being your child's advocate.

It takes strength and courage to stand up and do what's right not only for yourself but for your child. They look to you as their parent to make choices for them when they can't. I can promise you that this will not be easy. I can't promise that your choices won't be questioned, challenged or judged; because sadly someone somewhere will do this.

Several times during both my pregnancy and the twins NICU stay, I had to make tough choices. Choices I wouldn't have been able to make on my own without the support of my husband because they effected us both. I will forever be thankful that he and I are on the same page on many things.

From that ultrasound on that cold January day where doctors confirmed our fear. My water had broken and both babies were in jepordy. This was the ultrasound that also revealed that Addison "elegedly" had an ASD (whole in her heart) and Micrognathia (recesed chin to put it simply). The same ultrasound that brought one of the High Risk Specialists to the conclusion that we should terminate Addison, deliver her and attempt to put in a cerclage to save Blake. First Jake declined before I could even speak and stood firm that we would fight as long as Addison's heart kept beating and in no way would we chose to terminate her. That doctor had no problem telling us how much she disagreed and though it was foolish to put myself and Blake at risk. Second, I thought my OB was going to go off the deep end on the specialist and told us there was no way he would do what she was suggesting because that in itself was risking to me and Blake, and was even greater risk to loose Blake. He did warn us though that we could still loose Addiosn "naturually" and may have a stillborn baby. Our hearts broke. All we could do at this point was start antibiotics and then I would be sent home because we hadn't even reached viablity.

Fast forward to 24 weeks, I was admitted to the hospital one more time for steriod shots for their lungs in hopes that IF they should come early they would be better off from a respitory standpoint.  I had several doctors, friends and family telling me that now I needed to stay until I delivered. But I couldn't there was just no way, I couldn't handle it. I had 5 weeks to wrap my head around it and prepare myself but I knew in my heart that the stress of being "alone" in the hospital would cause me to go into labor. Jake understood my fears and we listened to each doctor give their reasons. While none of them could give me "the ok" to go home, one of them was brutally honest and told me that I was also right in thinking I was more at risk for infection by staying in the hospital and that going home could give us the best chance at survival. But legally he had to tell me to stay. We dissappointed a lot of people when we made the call to come home. Do I regret it... not really. Would I do it the same way all over again? I can't honestly say. But I do believe that staying home is what helped me get to 26 weeks. Had they kept me at 20 weeks, I do believe I wouldn't have made it that far.

In the NICU, most choices were not up to us. It was all about survival. Our first choice was "How far to go." Our answer was simple, do all you medically can and leave the rest to God. After that things were out of our hands again until it was time to think of alternate options for Addison who struggled to come off the vent. Our first MAJOR choice was did we want to give our daughter steriods to help get her over the hump. This came with the possiblity of increasing her risk for CP and developmental delays, the alternative was a Trach, increased lung damage and death. We opted for steriods.

After that, we were faced with the G-tube and Nissin surgery. Yes, No, Maybe, Give it more time? I armed myself with knowledge of it all and asked a million questions. Peds Surgery wanted to do one more test "just to be sure" because ofcourse the fact that formula oozing out her nose and mouth constantly wasn't enough, that was one test we refused. Why? Because it posed a huge risk for aspiration which could damage her already fragile lungs or worse. Surgery went well but recovery didn't.

Again Addison was struggling to be extubated. Her NEO at the time did not want to hear what I had to say about it and told me that her "45 years of medical expeirence as a doctor would not let me make decisions like that." I pushed back and so did she. This NEO was hell bent on Trach-ing her no matter how we, her parents, felt about the matter. (Keep in mind this NEO had only known Addison for 2 weeks and was not one of her "regular" NEO's. IMO, those 2 weeks didn't over rule the 4 months I had been her mother and watched all she went through.) I made phone calls, had the other NEO's consult, and made myself clear that this was not a button she wanted to push or a decison she wanted to make without our permission. If it meant I had to pay out of pocket for a transfer to another hospital I would do it. In the midst of this Addison had a MRSA flare up and this infection was raging through her body. I knew in my gut that if they cut another hole, in her airway at that, we'd loose her. And we felt like she had been through enough and if this was really the end she would give up. We were making peace with that, but we wouldn't torture her anymore, she suffered enough and had been in enough pain. Also worth noting that Addison was in a room with a handful of other babies, that all had Trachs...something didn't sit right about this. (Disclaimer..... this is just our situation and our story, I am not saying other's should make the same choice. This was the best choice for us.) At the same time they also wanted to surgically place an ART line (similar to a PICC line) to finish out a few short doses of antibotics, because she kept loosing veins. Nope, not happening, find another alternative it was too risky for us at this point.

Fortunatly the other NEO's were able to give a better history for Addison and educate this NEO. A few days later she informed me that she "just didn't know all that had to be done to extubate her before". I couldn't be kind at that point and I told her point blank, "There is a reason Addison was transferred with a chart and you at the very least could have read the cliff notes. Not to mention I told you this, not once but twice. I am sorry but I don't take well to being told what to do or that you will just do it anyway. That doesn't work for me and I honestly hope the next time you have an expeirence with a sitaution like this, you handle it a little better and professionally." Yes I was THAT MOM. And guess what, a week later Addison was off all oxygen, she went from the ventilator to a low flow cannula in less then an hour and she was being discharged a week and a half after that. The NEO was baffled. NEVER UNDER ESTIMATE THE POWER OF A PREEMIE. Just sayin'.

The day of discharge she wouldn't even enter the room to have me sign the paperwork. She had one of the residents to it and she must have thought she escaped me, but we met in the hallway on the way out. And had the nerve to tell me "Well mom WE made it." I kept quiet and kept walking with my baby in her stroller, on our way to freedom. I later found out this doctor was notorious for making parents cry and walking all over them. It's sad it really is. And I can't imagine where we'd be today if we had given in and just let her do what she wanted. I know that things could have ended totally differently even with the choices we made, but the fact of the matter is that things are the way they are for a reason.

I don't regret advocating for either of my children and we have always done what we thought was best for our children and our family.


Read more about Melissa and her twins at http://ourvalentinesdaysurprise.blogspot.com/.

Anemia is a common problem among premature babies in the NICU. Preemies are immature, so the systems their bodies use to make red blood cells are also immature. Even term babies have a normal period of anemia around 2 months of age, so you can imagine how anemic a preemie can get!

Most newborn babies have at least mild anemia. Infants' red blood cells break down faster than new red blood cells are made. Babies are usually at their most anemic around 2 to 3 months old, and gradually improve over the next two years. This normal anemia usually doesn't need any treatment other than a healthy diet with plenty of iron.

Because they are born early, preemies may develop more a more severe type of anemia called anemia of prematurity. In the last weeks of pregnancy, two changes occur that help full term babies to make red blood cells. First, a lot of the iron needed to make new red blood cells is transferred from the mother to baby in the third trimester. Also, in the last weeks of pregnancy, red blood cell production switches from the liver to the bone marrow. Because the processes that make new red blood cells are immature in preemies, preemies have a higher rate of anemia and their anemia is more severe than in term babies.

NICU care can make anemia in preterm infants worse. Doctors and nurses try to limit the amount of blood that's drawn for lab tests, but even small blood losses can affect very small preemies.
Anemia can only be diagnosed through a blood test. At our hospital, they took a few drop of blood from the foot. If your baby shows symptoms of anemia, doctors may do a blood test to count red blood cells (hemogloblin level) or to look at the percentage of red blood cells in the blood (hematocrit). These tests are often combined into one blood test, called an "H and H" for hemoglobin level and hematocrit.

Our 31 weeker (born at 2lb 3oz) had anemia. Thankfully, it didn’t require any blood transfusions (those are reserved for the severe cases of anemia), but upon discharge, we were instructed to give 1ml of Poly-vi-sol with iron each day (you can get this over the counter). At her one year appointment, her anemia blood test came back clean, and we were able to stop the Poly-vi-sol with iron.

The medicine tastes pretty bad (and smells worse). Therefore, I recommend mixing it with a bit of formula or breastmilk to mask the taste. You may also find that constipation is a side effect or the iron.

Group B Streptococcal

Group B Streptococcal, other wise known as Group B Strep or GBS, is a bacteria carried by 30 percent of adults in their intestines and 25 percent of women vaginally.  GBS can cause life threatening infections such as sepsis (blood disease), Meningitis (infection of fluid and lining around the brain) and also pneumonia in a newborn or premature baby.  Babies typically get GBS after it is passed from their mother, to them during birth. 

Diagnosing GBS:

• Every woman is tested for GBS during her pregnancy between weeks 35 and 37.  It is a simple test that just requires a sterile swab (Q Tip) to collect a sample from a woman's vagina and rectum. 
• If a woman goes into labor before 35 weeks, then her doctor can still perform the swab test when she comes into the hospital. 
• 25% of pregnant women carry Group B Strep and are considered GBS positive or Group B Strep positive. 
• Women who test positive for GBS usually show no signs of the bacteria infection, however they are at risk for passing the bacteria on to their baby. 
• Group B Strep is NOT a sexually transmitted disease

Preventive ways to keep a baby from getting GBS positive:

• Women who are considered GBS positive will receive antibiotics through an IV during labor.
• Women who go into labor before week 37 will usually receive antibiotics during labor
• Women who's water has broke 18hrs or more before delivery will typically receive antibiotics during delivery
• Women who have fevers during labor will be given antibiotics during delivery.  \
• Women who have already had a baby with GBS does not need to be tested again, she will automatically be put on antibiotics during delivery.
• If you are having a scheduled C section and your water has not broke, then you most likely will not need antibiotics. 
• Women who get antibiotics during labor have a 1 and 4,000 chance of delivering a baby with Group B Strep.  If a Women who is GBS positive does not receive antibiotics during delivery, her baby has a 1and 200 chance of developing Group B Strep positive. 

Signs of GBS Positive in a newborn and premature babies:

• Difficulty feeding
• Irritability
• Hard to wake baby up
• Difficulty breathing
• Blue-ish color to skin
• High/low Temperature
• low blood pressure
• high/low heart rate

How it is diagnosed in newborn and premature babies:

• The only sure way to diagnose Group B Strep in babies is to do a spinal tap to test the spinal fluid for the bacteria. 

Treatment for newborn or premature baby with Group B Strep positive:

• They are treated with antibiotics through an IV for several days, and sometimes weeks. 

Early onset disease:

• Early onset disease means that a newborn or premature baby will show signs of having GBS positive within the first week of life, and it is usually within the first day. 
• For early onset disease Group B Strep usually causes sepsis (infection of the blood), pneumonia and sometimes meningitis. 

Late onset disease:

• Late onset disease can occur from the first week through three months of life.
• Late onset disease can have the same infections as early onset disease, however meningitis is more common with late onset disease. 

Long term effects Group B Strep can cause:

• 25% of babies who have meningitis caused by GBS develop Cerebral Palsy, Hearing problems, Learning problems, and seizures
• Care for sick babies has drastically improved in the U.S., however 4-6% of babies with group B strep die from their infections.  And premature babies are more likely to die from GBS than full-term babies. 

While researching GBS positive to write this article, I could not find very much information on Group B Strep and premature babies so I will share my daughter Nora's story with you.

Nora was born at 25w5 days.  When I went into labor with Nora I was tested for Group B Strep and I tested positive so they put me on antibiotics during my labor.  I also had a sever infection of my uterus called Chorio, so I had almost every symptom listed above to be put on antibiotics to prevent Nora from getting GBS positive.  I had high fever, UTI, premature labor, infection, and I tested positive for it, so on the antibiotics I went. 

Nora was born with an infection but it was not GBS, it was chorio so she was automatically put on antibiotics at birth for the first 2 weeks of life.  After her birth all we heard about was chorio, so I did not think we had to worry about Group B Strep at all.  3 weeks after Nora was born she came down with another infection, again not GBS.  She was re-intubated and treated with antibiotics for a few days and then we continued on our NICU journey. 

It was not until Nora was 2 months old and 34weeks gestation, that she became extremely sick.  We got a phone call in the middle of the night telling us that Nora had stopped breathing (she was on nasal cannula at .5L and 21% oxygen) and that they were having to constantly stimulate her to breath.  We had been down this road a few weeks earlier when she had gotten the infection, and I never wanted to go down this road again.  My husband and I went up to the hospital, where I held my almost 4lb baby girl and had to pat her back, rub her head and beg her to breath every 2 or 3 minutes.  Nora turned every shade of blue, white and grey and those are colors I never want to see on my child again.  Nora stopped breathing several times in 2 hours and the Neonatologists decided it was time to give her poor body a break and put her back on the ventilator,  run some blood cultures, and put her on antibiotics right away.  They were pretty sure it was an infection, they just had to figure out which one it was.  It was not until about 12hrs later that her blood culture came back showing signs of GBS, so they then did a spinal tap on Nora (her 2nd one in the NICU) and that is when they discovered she had GBS positive. 

If you don’t know your A’s and B’s allow me to briefly explain.

When we brought Judith home from the NICU, we thought our journey with her would be different.  We knew we’d be dealing with the normal issues a 29 weeker that’s also IUGR would deal with, but had the hope that she’d live a long, normal life and be caught up by the time she’s 2 or 3.  We knew that we were lucky that she did not need a monitor or oxygen when she came home, were lucky that her ROP self-resolved, and she was taking breast milk from a bottle like a champ after struggling for weeks to master her feeds.  Never in our wildest dreams did we expect another wrench to be thrown into the mix; never in our wildest dreams did we expect that, after coming so far and helping her fight to survive, would we be this fearful of the future, knowing the odds of her dying long before us would become our reality.  Raising a preemie is challenging; raising a preemie with Cystic Fibrosis (CF) has been very challenging.








I never thought I’d end up being a dragon parent, one who will do anything to help their child survive and have the best quality of life possible.  I feel like a lucky dragon parent, though: DF508 has the potential to cause severe disease in CF patients, thus shortening their life expectancy more.  To date, Judith appears to have a more mild form of the disease, but things can change at any time.  So far, she is pancreatic sufficient, meaning her pancreas functions normally and her body can absorb fats as well as you and I; however, she has been showing signs lately of a change, and it’s starting to look like she’ll join the more than 90% of CF patients who are pancreatic insufficient and need to take enzyme supplements before meals to help the body absorb fats.  We’ve also been lucky with avoiding respiratory infections.  Thanks to her preemie status, she received a full course of Synagis injections last year, and due to the CF is receiving the full course again this year.  Aside from a couple colds and a sinus infection, our precautions appear to be working.


If you would like to read more about our journey, starting with our days in the NICU, you can read our blog 2 Bostons, 1 Preemie, &65 Roses.

Around the holidays our preemie group started to get a little glum so I asked everyone to share their happiest NICU memory. Even though it’s a hard place to be we all had good times, too!



We'd been there for a month or so when our bay had emptied out and the nurses were hanging out. I'd never seen them not zooming and it gave us time for lazy conversations about normal things like wedding table place settings and how one was in a band with her almost-DH. Cute! Their pamphlet had said "ask your nurses if you would ever like a hand or footprint and they will be happy to make them for you." I thought, well, it's been a while - I wonder if they'd help me do it?

The next day I brought in my baby books and paper and our primary brought out lots of ink pads and told me it was going to get messy - DS was a riot and covered in ink by the end. He didn't want to lay his hand flat (do they ever??) and so they came out looking like racoon prints! She was like 'I'm sorry they aren't perfect!' I told her they were - she'd given me the best gift of all - laughter. I'd never laughed with him or had a time when I felt so free

Urbanflowerpot



Despite all the "downs" we actually had a lot of fun in the NICU. Two of my fondest memories are Easter and Mothers Day.

The twins first Easter, they were able to wear clothes and I got the smallest size I could find, but they were still swimming in their outfits. But the true fun came when EVERY. SINGLE. nurse in the NICU that day set up a "photoshop" for us right their at their bedsides. It was unbelievable. They drapped sheets over the monitors and took off any wires they could. We laughed so hard because DD was less then amused and DS was making all these funny faces. The nurses found a basket to put them in and everything.

My first Mother's day, while very bittersweet, was AMAZING. One nurse has a tradition of making "footprints in seashells" each year for the moms and or dads. I had no clue until later that night when they handed me this little box. Truely amazing... and the NICU was super busy that day yet they still found time to think of us mom's, a moment I'll never forget.

JakesBride07



I'll play! I have a couple:

- I distinctly remember the moment when we started talking about "when" our son was coming home, rather than "if." The nurse who told us it was okay to talk about our eventual homecoming was named Trish. I even have pictures of her that day.

- The first time my husband changed my son's diaper, he got Z's hand stuck in it. That was hysterical. And, the first time my husband changed Zach's clothes, it took him about 15 minutes. I was laughing so hard I was crying.

- After we'd been there awhile (sometime after the terror of the first days and before the excitement of the last days), a nurse from one of the other hospitals in the hospital system brought us a hat for Zach. It was crimson and grey - the colors of Ohio State. The joke was that, since we were from Michigan, home of University of Michigan (Ohio State's big rival), our son was "Born to be a Buckeye." This nurse from the other hospital had heard our story and had grabbed the hat to give to "The Michigan Family." It made me so happy that someone was thinking of us like that. I was so touched. Later, my sister got Z an Ohio State onesie that actually said "Born to be a Buckeye," so that completed the outfit.

- The day or so before discharge, one of the night nurses got a camera and got all of the staff together to take a bunch of pictures with Z. They got him all dressed in his Born to be a Buckeye stuff and did pics where the staff was all pretend crying to see him go. She mounted them on paperboard in a scrap booky way. It was so sweet, especially since we never met very many of the night nurses.

Thanks for posting this question! Makes more memories come back... Good ones for a change. ;-)

SushiNoMore



Hands down, for me it was the first day I walked in and the nurses had dressed the boys in the clothes I left. They looked soooo cute! And all the nurses make a big deal of telling me how cute they were.

Sail123



When Henry was 3 days old we got to give him his first bath. They took off his CPAP and all his wires. The nurse told me to be quick because she wasn't sure how he'd tolerate it. He fussed at first but then as I sat him up to do his hair he got real quiet and just STARED at me- right in the eye! He was too cute and went cross eyed with all the effort. I knew then that he knew I was his momma and it was fun to see his whole face at once. The added bonus was that he did great off CPAP so they changed him to nasal cannula that night. We did every bath after that first one. They were always a lot of fun!

Here's a pic from that night:



HazieDaze



When I got to hold LO for the very first time and the nurses took our first family picture...Only the baby was looking at the camera..we were both looking at him :)

lilstar2009



This is a silly one:
Mine was one time when DH was changing DD's diaper. She was a few days old (and in an open crib), but her poop was still pretty dark and gross.

Just as he took it off, she let out an explosive poop that went EVERYWHERE! Luckily, it missed DH, but it splattered on lots of medical equipment and the floor. I was laughing so hard, I could barely tell the nurse outside what had just happened.

Sucrets4



We actually had some good times in the NICU - one of our closest friends is a NICU nurse and she was a godsend more times then I can count from the day DD was born until our rooming in "sleepover" - She works nights so she would dress up DD and put her in funny positions and places and take pictures and send them to me - I would be up pumping and get a photo of DD doing something hilarious! it would make my night at 4 am! I loved the first time DH got to hold her - or the time she pooped and it shot across her isolette and hit the plastic!!! they had to give her a whole new isolette! lol She was fiesty from day one and even at 24-26 weeks she was a comedian - she would pull everything and move everything in her isolette - especially the stickers with the day to change stuff - we would come in and find her with a sticker on her bum that said change thursday!

Adrielegorburu






I had some happy times in NICU...

1) When DH changed DS dirty diaper for the first time. He kept saying are you sure this isn't tatooed on. LOL

2) The first time I was able to hold him. It was so amazing.

3) Also the 1st time he was able to eat

4) Then the day we were able to take him home it was so special and amazing.


I have a couple:

-The day I was able to hold them BOTH at the same time. I was over the moon that day!

-When we walked in one morning to see them both out of their isolettes and in open cribs. What a fun surprise!



1. The first hold.

2. The fact that our primary and secondary nurses got to know us beyond just DH and I being Owen's parents. Our primary had a magazine addiction and would always leave them at his bedside for me to read when she was done.

3. When our primary would work the night shift I come in after lunch and stay until midnight. It was always so quiet after dinner so it would give me time to have an actual conversation with her, whether about Owen or what happened on tv the night before.

4. Towards the end of Owen's stay he was the only baby in his bay so we got our own nurse. I loved coming in in the morning and seeing all of his clothes arranged nicely and the furniture in his room moved all around.

5. From day one Owen LOVES to be held in an upright position while your standing. When he was stable enough the nurses would let us unhook him and go for a walk around the halls of the NICU. The first time he looked out a window was priceless. It was a bright sunny day and he tried to do everything in his power to close his eyes and look away from the bright light.



We always try to stay positive and in the last few weeks we've had many happy times: both boys being moved into big boy cribs, Ryan getting off oxygen, Aiden finally getting extubated. I go on and on. But these few moments really stood out:

1. When the boys were born they were so unstable that I wasn't able to hold them at all. All I remember was saying that I can't wait to hold my babies and hear them cry. One night, when Ryan was just a few weeks old, the nurse was giving him his bath and he began crying. She stopped and let us listen. She even let my husband record his cry on his Iphone. I will cherish that moment forever, and to this day I cherish his cry.

2. Both boys have managed to poop on me an my husband during diaper changes. For some reason, they only pee on me though.

3. I love when the nurses have regular conversations with us, not only about our boys. There is one nurse who is always singing and is cheerful and joking around with the other nurses. Makes me feel like we are in a 'normal' setting.

I'm sure there are more moments that I am forgetting.



Great idea, Urbanflowerpot! (Your story made me laugh because we had a similar experience trying to get DS's prints for a wall hanging.)

We had a happy experience one night after about a month. We had a nurse and respiratory therapist we'd never had before.

My husband and I have a bad habit of randomly quoting our favorite movies and shows, which are often fairly obscure. We were doing a little back and forth quoting, when the baby's nurse jumped in with a quote from the same movie. It turned out we liked a lot of the same obscure stuff, and we spent most of the evening and other times she was our nurse talking about our favorite movies. (It really took our minds off our troubles.)

The RT, had a really uncommon, eastern-european first and last name. But she was planning her wedding for the fall. She was marrying a man with a very common last name, that happens to also be my maiden name. She was telling us how her family had started teasing her that she was going to be too plain-named after the wedding and calling her by a very common first name as well. The first and last name were my grandmother's name. We took it as a sign that my grandma (deceased for more than a decade) was watching out for our son.



One of my absolute favorite days in the NICU was the day Michaela went off her oxygen and DH and I were able to bring her into a parent room for an hour. It was the first time since she was born that just the three of us could hang out -- no nurses, no doctors, just us.

I also loved the first night her primary said we could put her in clothes! It was so unexpected, so I hadn't brought any of her clothes with me, but we got to go through the ISCU stash of outfits and pick out a cute one. Then the nurse took a family photo for us. Will never forget that night!

I also laughed alot every time Michaela would poop or spit-up on me or DH. It was such a "normal" baby thing during such a stressful time when nothing in life seemed normal anymore.



Our happiest NICU day was the day we were all reunited as a family... July 1, 2011, after 11 days of being apart, the twins were erunited in side-by-side isolettes, in the same NICU room.

After birth, both were in the NICU, but on two different sides of the walls (each room has 4 "walls" with babies on both sides...) Will was on wall 1, and Erin was on wall 4, making us split up to see them. 5 days later, Erin was moved to the intermediary care unit, but Will had to stay in the NICU as he still had a PICC line in. When they removed the PICC line, 5 days later, we were all reunited! Our primary even reserved two window spots so that the twins were side-by-side, and we had a private window space just for them.

Best NICU day ever!



Ours were kind of spread out.

While I was bummed that I missed Santa, we had an awesome surprise waiting for us before Christmas: Santa visited the NICU, J got an adorable stuffed bear wearing a shirt that said "You are Loved," and she had her first picture with Santa! I was so happy that she was off humidity by that point, because they were able to pop her top and drop the sides of the isolette to get a good picture.

One of the nurses is a hobby photographer, and she always takes pictures of the babies for the holidays. She'll bring in props and will make a scrapbook page to display on the supply cart/white board by each baby's bed. I was always excited to see J's new page as a holiday approached!



I'll play!

Best night ever was when we started quoting Princess Bride at like 10pm with me, hubby, and two of the nurses. I was laughing so hard I was crying. Then I realized the pump reminded me of The Machine from the movie, and started laughing again. It was great to just joke around and form those friendships.






A few stand out to me as I read over everyone else's replies:

1. Soon after he moved to CPAP (he was on the ventilator for just over the first month) I got to spend a morning helping give him a bath. I had done baths a few times before that, but I was always so tense, and since he was vented it was a very quick wipe down. This time, we took our time (it was still just a sponge bath), took pictures, and laughed at his funny expressions. The nurse took off his CPAP to change it out, and it was the first time I got pictures of his entire face.

2. The day he moved to the nasal cannual. He was just over 2 months old, and eariler in the day had a completely scary desat when he needed to be bagged and his oxygenization went down to single digits. It sucked. (I was there). Got a call a few hours later from the nurse who said they switched him to the cannula. What the what?!?!? They suspected (correctly) that he was just fighting the CPAP and that he was clamping down and stoping breathing. Stubborn little guy. Well, a few hours later when we went back in it was like there was a party in the NICU. All the nurses were thrilled to take him out of the isolette and pose with him. And one of them took pictures of the whole transistion from CPAP to cannula which I will always treasure.

3. Probably a no-brainer, but the day we brought him home...the nurse let us disconnect his wires and it was the first time (besides a few baths) that we held him wire free. Knowing we were leaving what had become our second home for the past 4.5 months was a mixture of pure happiness and sadness to leave all the nurses and doctors and staff that we grew to love over those months.

Bringing your baby home is one of the happiest day of your life.  When you've spent over 100 days in the NICU, it's a very special day.  No more "visiting" your child, no more limited snuggling, no more middle of the night phone calls to the NICU.

• "Be patient (easier said then done, I know). Ask lots and lots of questions. Ask if your insurance will cover a home health nurse to come in once a week, once every two weeks, whatever... to help monitor weight gain etc. Get a planner...you'll need it to keep track of all the appointments in the coming months. Keep copies of the discharge summary in your diaper bag, should you need it. We also got a folder for the diaper bag and kept all their various papers from each appointment because often we'd need those papers for the next appointment or to relay things to each specialist or the Pedi."
• "Keep the discharge paper they give you. I have refered back to it every time I fill out paper work for docs, IE, and starting school."
• "Make sure you have all the supplies you need to care for them on hand. At least enough to get you through the first few weeks. Adjusting to caring for your baby yourself is a tough job so use the NICU time wisely. Stock up on diapers, wipes, bath supplies, meals for you, etc. Anything you might need and forgot about. I know we used Ian's 8 days in NICU with Jack for this since I was on hospital bedrest for 7 weeks prior to their birth, so I had NO TIME to nest before my discharge. Also, if you have anyone who's willing to come and visit you to help, make sure to stock up on hand soap and hand sanitizer. And have them do chores as much as possible rather than baby care."
• "Ask anything you have questions about. Be sure you are clear about any follow up appointments, program enrollments, and other necessities. We were able to get some coupons for Neosure from the NICU social worker, which really helped! Also, know who to call if you have questions or issues after discharge. We did not see the pediatrician for a few days after the discharge, so we had to call the NICU with questions for the first few days. After that, it was the pediatrician."
• "Dont let yourself get too excited about a "date" just trust that your baby will go home when she/he is ready."
• "We'd been home with the other baby for 2 weeks by then, so the biggest change was going from sleeping pretty decently with one baby to sleeping not at all with two :) The apena monitor sucked though. She'd had one episode early on and the thing had a million false alarms. We eventually ditched it against medical advise when she was about 41 weeks gestational (about 3.5 weeks post release) after the doc told us to use it another 6 weeks without having even read the alarm report (literally, he had not gotten the report from the download yet). Our pedi supported our decision, but obviously this wouldn't make sense for a baby with a history of A/Bs. The point of me telling you this detail - use your mommy gut :)"

After days, weeks, or months in the NICU there is nothing more exciting or wonderful than hearing you get to bring your baby home.

For me, discharge day was filled with emotion. Excitement and pure joy at the idea that my baby was finally healthy enough to come home and never leave my side. Anxiety of "what ifs" that any first time parent feels compounded with the "what ifs" that come after months of watching your baby struggle to breathe, eat, poop, and grow. Sadness saying goodbye to the doctors and especially the nurses who cared for my baby and for me for three months. And finally the humility that comes with the knowledge that I was given the greatest gift in the world and for the first time, she would be entirely my responsibility.

Congrats on making it close enough to bringing your baby home to feel like you can read this entry! Below are many other NICU mom's perspectives on the, the emotions that went with homecoming, the first days at home, and what people did to help make it better.

What was homecoming like emotionally?

• "Overwhelming and relieving all at once."
• "Overwhelming and exiting and happiness."
• "I felt this huge sense of relief when they came home. Relief that they were healthy, relief that after everything I went through and they went through that I still had 2 babies to mother. I felt torn when we left Jack in NICU and it was really hard for me for those 2 weeks. I felt like I was bonding so much with Ian and not much with Jack because Ian was with me all the time. I hated having them separated. But they don't seem to notice it now, they love being together :) I was also elated not to have to go back to the hospital EVER AGAIN after Jack left."
• "It is a tough emotional experience. At times it was scary because we weren't sure if our son would handle his new environment or experiences well. (What if he was allergic to a cleaner I'd used or dust that I'd missed when cleaning? Is he going to be upset by being alone in his new room? What if he stops breathing and we can't revive him? etc.) At times it was empowering. (We decided to keep an ins/outs log on a white board in the kitchen to help us track his eating and excreting habits.) At times it was frustrating. (Other people did not always remember to remove their shoes or Purell when they came in.) It was fun at times, too! (Watching our son interact with his new environment and get to know us better has been so exciting!) Overall, it has been rewarding."
• "It was strange - I was nervous and excited but the biggest part for me was actually leaving the hospital - being "wheeled" out. I had trouble with missing that part of a "normal" birth experience. Of course every time I got into the elevator leaving the hospital a mom would be in there in her wheelchair holding her baby with a million balloons and a cart full of flowers with a bunch of family - I left with a pillow and a breast pump. When they wheeled DD out in her bassinet to our car I was beaming - we didn't have all that fan fare but for me they might as well have been a band and a confetti shower!"

What were the first few days at home like?

• "With DS the first day was almost what I would except bringing a baby home (minus the O2 and the beeping monitor.) Plus he had us worried because he wasn't really interested in eating when he first came home, luckily that was short lived. The following days were chaotic, because we were constantly running to the NICU for DD and trying to balance DS's needs. Once we brought DD home, to be honest it was so peaceful. We were able to get into a good routine and DD settled in so nicely."
• "Excting - a little scary. He was alternating nursing a bottle feeds it was overwhelming feeding and pumping at night. He slept alot and was pretty much 3 hour scheduled from the NICU and I was waking him to feed every 3 hours"
• "When Ian came home, it was rough. He wanted to sleep all the time, so we had to wake him up every 2-3 hours to eat. Plus, we had to find the time to go and visit Jack because we didn't want to neglect him. It was definitely an adjustment, since Ian didn't like sleeping in the relative silence of home, but it wasn't too terribly bad. When Jack finally came home, it got harder. We'd gotten used to the relative ease of one baby and it was an adjustment learning how to take care of 2 at a time. But since they didn't have any lingering problems from NICU that we needed to take into consideration, it wasn't as bad as it could have been. I would venture to say (though I don't know for sure) that it was much like taking twins home from the hospital without NICU time."
• "The first few days were a big learning curve for all of us. I didn't realize just how quickly the baby would catch a chill in a 90 degree room, so our first afternoon was not terribly comfortable for him. I learned to keep a cotton hat on his head and an extra onesie on his body at all times. The first night with the monitor was really sleepless, since both my husband and I overreacted to every beep (now one of us gets up calmly to check on the baby's color and breathing), and we had the audio baby monitor on so we could hear all his noises--which were a lot more than we expected.
• "surreal - it was so strange to all of a sudden not have monitors or nurses or doctors around. I was soooo scared. I must of checked her breathing a hundred times a day. I thought I knew how to care for her completely having spent 4 months in the NICU - but that first bath alone, first time I had to suction her nose etc. was so scary."
• "Once we were home we stuck to the every 3hr diaper change and bottle feeding routine that he was already in since the NICU. The most difficult part was not having all the monitors on him like he did in the NICU."
  

What helped in those early days?

• "Honestly the thing that helped the most in the early days was SPACE. Time for us as a family to get used to having one and then two babies at home, and time for them to adjust without being overwhelmed. And our home health nurse that was there within a day or two of their discharge was such a God-send."
• "Family cooking and cleaning for me."
• "The first few weeks, we were staying with DH's grandparents. It was such a help to have someone else cook and clean and teach me how to take care of the boys. Plus, I was recovering for my c-section, so they were a godsend as far as recovery goes. Most of my family and friends were no where to be found, but having a supportive DH was the greatest thing in the world."
• "Both my husband and I had the week off of work, so we could take turns with baby duty and sleep. The following week, my husband had to work, so my mom came to stay for a week and help me. We had some frozen meals ready to cook in the freezer from when I was on bed rest and while baby was in the NICU, so we didn't have to expend time or energy on cooking. And I framed my mindset that we had to take care of basic needs first: baby eats, gets changed, and sleeps; parents eat, use the bathroom, sleep, and shower; and then all the housekeeping and such. We had proactively told family and friends that visitors would not be welcome in the baby's first month home. (We did wind up inviting a few people, but they understood it was because we asked them to come, not because they asked us if they could.)"
  
• "Family and friends brought food to freeze while she was still in the NICU - That was a lifesaver. I didn't have time to cook. I also have a very good friend who is a NICU nurse who came over all the time."

Here are some preemie mom thoughts – if you have something to add please leave it in the comments. NICU nurses often lurk on preemie pages to hear what we’re saying about them so they can improve.

What Would You Say to NICU Nurses? Preemie Moms Respond...

If you don't like working with babies, please find another job!

Please keep your personal opinions about our babies to yourself.. if a neurologist can not confirm that my baby will have CP or anything else wrong, please keep your opinions to yourself.

To the nurses who care about their babies & their parents.. THANK YOU!
-Medtwin

Something I loved about one of our NICU nurses... we were working on bottle feeds with DS, he had not been able to drink a whole bottle despite our efforts. Probably the third day we tried his nurse sat down with me and politely said, "Can I show you how we feed the babies?" And waited for my answer before taking DS out of my arms. She showed me a technique I would have never thought of (I've fed babies before, usually in the crook of my arm cradling them, not sitting up with my hand on their chin, etc.) She then handed him back and helped me get positioned. Then it got even better, he took all 2 ounces! The nurse stood up and announced to all the nurses "B just drank his first whole bottle" and they all applauded, I melted. Talk about making a major moment for us. It really is the little things that count.

Making a parent feel like their child is the most important baby you are caring for (let's say if you are assigned to more then one) is the best thing you can do for a NICU parent. Remember the compassion and why you do what you do...We had one or two nurses who just didn't have time do care for our babies the way they should have been cared for, or so they acted. I actually had a nurse tell me via phone, "I tried bottle feeding him but he was pokey so I just didn't want to bother, I poured the rest down his tube."
-JakesBride07

I had a NICU nurse that always fed LO early. It made me so sad when I'd walk into the room all excited to feed my baby and she'd already be feeding in the nurse's arm. She never even offered to let me finish the feedings. I *hated* when she was our daytime nurse.

I loved when the nurse would offer suggestions when she saw one of us struggling. She always made sure to not make it unwanted or unnecessary advice...I think her timing and tact were fantastic.

My favorite nurses were the ones who didn't make me feel like I was a bother when I wanted to breastfeed.

And finally, while I don't mine chit chatting, I did not come down here to entertain you all day. I am here to be with my child.
-LegalPawn

This. Holy hell I hated when I called to ask her schedule or left for a little bit and they'd feed her early. Not because she was crying or hungry but because they had other babies to care for and needed to fit it all in.
-KitKat145

Most parents know exactly how many minutes/hours/care times each day they spend in the NICU. Nurses telling me I spent too little time or too much time there was always hurtful.

Let the parents help as much as possible during care times. Dont assume we dont want to.

My daughter coded several times while in the NICU. The 2 times I remeber were the worst and the best handled by the nurses. One nurse totally ignored me and lost her cool in front of me. The other was really calm and communicated with me and talked to me while getting my daughter stable. Suprisingly the one who lost her cool was a seasoned nurse and calm and collected nurse's 1st code was my daughter.
-Caitdana

Our NICU nurses were amazing for the most part. We were very happy with the care our daughter received. My worst experience with a nurse was this: I exclusively pumped because my daughter wouldn't breastfeed (at first she had a feeding tube and was too young, as she got older she just had no interest). I was also struggling with low production. I was pumping bedside one day when a nurse said to me "That's all your getting?". This comment was extremely hurtful as I already had major guilt at not being able to produce enough for all her feedings. When I recounted this episode to my husband, I burst into tears.

Besides this experience, I thought the nurses were amazing, although it annoyed me when a new nurse would speak to me as if it were my first day there, which I found condescending.
-Pips09

Treat the parents like they are the expert on their baby, not you. Yes, you may have the medical expertise. But, you don't have the "mommy or daddy sense" that the parent does.

Also, be the person who stands in front of "the bus" and voices concerns to the neos and nnps that parents are to afraid to bring up. You will probably be talking to the parents more than anyone. If the neos or nnps are doing things you know are upsetting the parents, ask them to explain it better to the parents or speak up and see if there is another route that can be taken. Let the neos and nnps know the concerns the parents are having. It isn't always easy to 1) see the neos on rounds or 2) speak up.
-Katie4253

All of this, but especially the bolded part [Treat the parents like they are the expert on their baby, not you. Yes, you may have the medical expertise. But, you don't have the "mommy or daddy sense" that the parent does.]. If Z was having a tough day, we would usually not kangaroo with him. We learned that he did worse when he was held if he was already in a touchy mood.

On the day of his first eye exam, he'd also just been moved back to the CPAP from the canula. He was having a tough day. The nurse offered to let me hold him, and, at first, I refused because I knew he needed rest. She pushed me a bit, and he had the worst apnea spell ever. He almost had to be bagged. It was terrifying. I still feel a bit of guilt about it - if I'd listened to my instincts, he wouldn't have had that spell. The nurse should have respected my opinion when I told her I didn't think it was a good idea.

We had one nurse that we loved in particular, and she always always always listened to what we thought needed to be done in terms of holding our son. If he was having a rough day, she always understood that we didn't necessarily want to make it worse by holding him. This same nurse also was willing to be the "bad guy" in a tough family situation we were having. That was awesome. Having the nurses stand up for you and your baby was much appreciated, even if it was outside of her normal duties.

I also agree with the thoughts about how important it is to have a caring nurse when it comes to feeding. I remember one nurse in particular who tried to rush my son through a bottle feed. The rule was that if he had 2 bradies during a feeeding, it went down his tube. Most of the nurses were very careful with the pacing to avoid a brady, but she just rushed through it. He bradied a couple of times very quickly, and it was like, "Well, that's the end of that! Down the tube." It broke my heart.
-SushiNoMore

As my LO got older, it made me happy when I came in and LO was being held. I realize this is probably last on their to-do-list, but it's nice to see them gettin' some lovin' when they are in the hospital
-Lemen99

We loved the nurses who saw Henry as an individual and got to know him and us. ITA with pp that treating the parents like the experts they are is key, esp. in the feeder grower stage. I loved it when they asked me what he liked and how he did with certain things. I also liked it when they realized that chit chatting about random things helped me pass the time. Sometimes the silence was deafening!

Some "pointers": When parents call for updates remember that they are unnaturally separated from their LOs and every details DOES matter ( I hated it when I called at 2am and all they could say was "nothing much happening, you should be sleeping!"). My favorite nurses told me the funny positions he was in and the cute facial expressions he was making.

Remember that parents notice everything going on around them. If you handle another baby a little too roughly, let it cry too long, or complain about another set of parents, we assume you'll be doing the same thing when we leave our LO.

Esp. early on, every chance we get to touch our LOs and care for them is monumentous. Don't rush to "get things done" before we get there- save that dirty diaper, temp, or repositioning for us to do! Also I loved it when the nurses asked us to do these things and made it a given that we wanted to/were going to hold our LO as much as possible without us having to ask!

Finally talk to the parents of your primaries about their preferences for painful procedures. I liked to be there because I could offer some comfort by hand cradling or giving sweet ease. It would burn me up when he seemed to get stuck every time I left for a minute to grab food or go to the bathroom. It felt like they didn't want me to watch- like they weren't good at it or it made them nervous.
-haziedaze

I pretty much agree with everything the PP have said.

I liked the nurses who took initiative to go beyond their job. eg. (1) calling us when he did something cute, finished two whole bottles in a row etc. (2) asked me which of his clothes were my favourite so that if they had to change him when I wasn't there they would put him in something cute. (3) one morning I came in and the night nurse cleaned out his whole cupboard and organzied and folded all of clothes instead of reading a magazine when she wasn't busy.
-jenmikw

Know that I'm the mom and while I respect that this is your job, it's my CHILD. Please help me and let me parent her. I have had issues with some nurses doing things without me ahead of her schedules times and while it may just be a diaper change to you, it is one of the few things I can do for my baby.

Explain things! I consider myself a reasonably smart person, and I'd have to play context clues to figure out the jargon. I appreciate it so much when nurses answer my questions. I ask for updates and specific questions every time I call and visit. I shouldn't find out that she's coming off a med 5 days after you started it.

Whew, lol that sounded quite vent-like. Overall, we've had a great experience with our NICU drs and nurses, but these are the things that irk me.

It makes me feel absolutely wonderful when I hear that a nurse called when she was off to check on Layla. It helps to know that people care. :)
-jenifairies

This is tough for me, because I have half a preemie/NICU mom brain and half a nurse brain ;)

The biggest thing to me is when they include us. Including us in rounds, daily care, feeding, ANYTHING, means so much to us. When my daughter was first born, I was on a Mag drip and couldn't see her for two days. When she had been in the NICU about 3 hours and had been stabilized and intubated, my husband got to see her. He was obviously very upset and terrified and our nurse, who we LOVE and is one of our primaries and is having surgery tomorrow and won't be back before we go *sob*, let him take her temperature. Such a small, menial task in a normal world, but my husband said he will NEVER forget her for being so kind and patient with him in such a scary situation. Makes me tear up just typing it!

I also love that her primaries text & call each other to update each other on her. I heard all three of them were in a training class last week and one said, "uhh who's taking care of our baby?" LOL I know some parents don't like when the nurses refer to the babies as "my baby", but to me, as a nurse, that just means that I am taking ownership of what happens during my 12 hours. When I'm working, I am 100% invested in my patients!
-GatorNurse

Talk to my baby and talk to the other babies. Don't just silently go through the motions with your care. I think it's important to tell the babies how good they are doing, how great they look, how cute they are- all the things that mommy and daddy would say if they were there.
-spain116

There is so much but I can't think of it all right now. So I will contribute a DO and a DON'T DO:

1. Please DON'T hesitate when I ask to hold my child (when he is stable enough to be held of course). I had a few nurses hesitate in the beginning, like they didn't want the extra work. Most nurses are great with this though bc they see the importance of bonding.

2. DO take the time to teach parents. There is one nurse who always calls us for bathtime and the first time or two she really guided us and explained how she does things (of course saying that we can choose to do it her way or find our own way). She gave us wonderful suggestions that really made bath time easier. And most importantly she took the time with us to teach. She didn't rush us or seem impatient.
-AlwaysSunny925


Ditto this [spain116: Talk to my baby and talk to the other babies. Don't just silently go through the motions with your care. I think it's important to tell the babies how good they are doing, how great they look, how cute they are- all the things that mommy and daddy would say if they were there.].

And approach the baby gently and with a quiet voice. Don't be rough with her, respect her space and tell her what's happening next, even if it seems like the baby doesn't understand. Don't speak loudly around the incubator and laugh with your friends. Especially for tiny babies, keep the lights dim when possible.
-mariposa_atl

For me... something that was especially important was for the nurse to remember that although this is her 1 billionth blood transfusion/PICC line/Desat/Brady/Apnea/Choking episode/Intubation/CPAP/Cannula etc. etc. etc. It is most likely our first (of maybe many) and it is OUR baby that it is happening to. So don't be so non-chalant about it. Tell us what is happening and why. Explain that this is good for the baby because it is what they need right now. Hug us if we want or let us cry if we want.

Also, as PP said, there was nothing I liked more than to call or arrive to see that my son was being held/carried/cared for by a nurse and not just during a diaper change/temp check/feeding. One day I showed up and my son wasn't in his crib and I couldn't see him in the room, until a nurse turned around and she was holding him at the table as she did her notes. Another time I called and the nurse on the line was like "he is doing great, so-and-so is dancing around the room with him and singing" I said, in a panic, "if he is off the monitors, how do you know he is ok?" But the nurse assured me that they "know" him and he was fine... and he was! (He was much older at this point tho!).

Oh and... THANK YOU A MILLION TIMES OVER!
-mrsV719

I shouldn't be learning about how to take care of my newborn in NICU through message boards and websites. Please take the time to be sure another nurse has gone over things we can do - like laundry, baths, decorating the incubator, etc. I was so grateful when one of my nurses told me I was allowed to change his diaper! I'm still not tired of it. Sadly, I only learned that I could have been taking his temperature, too, after reading these responses nine months later.
-UrbanFlowerpot

List compiled by Stephanie of Urban Flowerpot