Tuesday, January 31, 2012

By: Rachel, Early Intervention Specialist

What is Early Intervention?

Your Little One is Special and may have special needs. Early Intervention is a program created by the government to help infants and toddlers with developmental delays. Early Intervention Services help children reach their goals in Cognitive, Social/Emotional, Adaptive, and Physical Development. Your Early Interventionist can help set up Occupational Therapy, Physical Therapy, Speech Therapy, and other developmental specialist. The earlier you begin services the more time your EI (Early Interventionist) and Therapist have to help your child catch up to his/her peers. Early Intervention helps minimize the need for Special Education services for many infants and toddlers as they reach school age.

Do you suspect a delay?

If you suspect your child may have a developmental delay you should contact your pediatrician as soon as possible. Your pediatrician, day care provider, or you can contact your State’s Early Intervention Program. Once a referral has been made to your State’s Early Intervention Program you will be contacted either by a State Provider or EI Agency. The provider will perform a Curriculum Based Assessment to determine if your child needs EI Services. Each state varies, but many states have a Gestational Age and/or Birth Weight automatic qualification.


The Curriculum Based Assessment

There are many different Curriculum Based Assessments that your provider may use. Some common assessments include the HELP, AEPS, Denver, and Battelle. Some providers may Direct Test your child, where they will see if your child can do the various tasks. Other providers will simply ask you if your child does the tasks.

Sample Tasks/Milestones:

Begins to Play with Rattles
Bangs Objects on Table
Responds to Sounds
Finds Hidden Sounds
Inspects own Hands
Looks for Family Members or Pets when Named
Babbles consonant chains “baba-baba”
Holds Head Steady in Supported Sitting Position
Rolls From Tummy to Back
Grasps Toy Actively
Discriminates Strangers
Laughs
Bites and Chews Toys

Individualized Family Services Plan (IFSP)

Your Early Intervention Specialist will meet with you to create your Individualized Family Plan. YOU are extremely important to this plan. Your EI needs to know what your wants and needs are for your child. Your EI will help you come up with goals for your child based off of the results from your Curriculum Based Assessment. These goals will be set up so that you can see measurable results. If you would like for your child to be evaluated by an Occupational, Speech, or Physical Therapist please let your EI know so they can set those evaluations up for you. The plan will list all necessary services, how frequently the services will take place and for how long. This plan can be updated and changed as frequently as necessary. As your child meets their goals, new goals can be created.

What Should I do during EI Visits?

Many parents aren’t sure what to do during their Early Intervention sessions. Your participation is the BEST thing for your child. Ask lots of questions! Your EI is there to teach you different techniques and activities that you can work on with your child all week long to help them improve in the areas that they are showing a delay. If your child is showing an improvement in a certain area let your EI know, they are just as eager and excited about your child’s progress!!
Wednesday, January 25, 2012

Happy Birthday!

I have a one-year-old.

My little 2lb 8oz baby turned one today. He now weighs 18.5 lbs, which puts him nearly on the growth chart for his actual age. He's grown from 15 inches long to about 27.5. Again, just starting to graze the bottom of the growth chart.

Whenever I describe his age to people, I always do the mental math by saying he was born 3 months early. It was actually a little more than that - 3 months and 5 days early. When I look at his ticker today for his adjusted age, it reads "8 months 3 weeks and 5 days."

Wow. Looking at it that way really highlights how early he really was.

As you'd imagine, today has been a crazy mix of emotions. Like all moms, I'm happy to be celebrating the first birthday of my son. I'm sad and nostalgic that he's growing up. I'm proud of how much he's grown.

There's so much more than that, though. All of my emotions just seem so much stronger than most parents' on their child's first birthday.

I feel like I'm turning a page. It's the same relieved feeling I had when we brought our son home from the NICU. We made it. We survived. HE survived. A whole year. And he's a thriving, happy ball of energy. What a relief. Now, we can concentrate on enjoying things more. It'll get easier from here...right?

And I'm so unbelievably proud of how hard my son fought to get here. I've heard people talk about their hearts swelling with love, but I never understood that until I became a mommy. It's like I can feel my heart grow. And it's magnified today. If we would have lost him in the beginning, I know we would have been devastated. Only now, after falling in love with my baby, do I truly understand what I would have missed out on if my son didn't make it. I didn't have enough capacity to love him enough until many month later, and it's only in hindsight that I'm able to grasp the all-encompassing love I would have missed if my son didn't come home with us. It physically hurts just to think about it that way. Luckily, my son was a fighter from the beginning. Rolled with the punches. "I'm showing up early? Cool. Have to live in a strange hospital in a strange city in a strange state? No problem." He's weathered the storm better than anyone, and we're so lucky to have an amazing son who likely won't have any long-term effects of his early birth.

I'm proud of us. My husband and I. We've been to hell and back in 2011, and we're closing the door on that. All three of us were admitted to the hospital at least once in 2011. We've had health scares and spent a dizzying amount of money, but we're here. And we'll be stronger for it. Better for it. I look back on who we were before our son was born, and I don't even recognize us. Everyone changes when they have a baby, but not like this. Not like this.

But not all the changes are good. All the memories came flooding back over the past few weeks, and they were especially strong today. Sometimes, it's images of labor & delivery or the NICU. They pop in out of nowhere, triggered by all sorts of things. The weather that takes me back to the snowy day of my son's birth. The Super Bowl advertisements that drag me back to that pumping room and the tiny individual TV where I stared at that game without knowing the score. My MacBook dictionary screen saver that has "gavage" as its word of the day. Really? Why today of all days? That stupid stupid wonderfully produced Pampers commercial about Every Little Miracle. It shows that tiny baby born 3 months early and it has that beeping. That NICU beeping. Beep...beep...beep... It took me months to not hear those beeps every time the microwave finished cooking or a truck backed up or my alarm clock went off, and that commercial takes me back. Every time. And it's been harder to push those images out as his birthday got closer.

It's not always memories, but sometimes it's feelings. I've been feeling anxious the past few weeks, and it got worse last night. I couldn't sleep. I was too lost in my thoughts until way past 2 am. I never had anxiety before the NICU, and now, every time I feel anxious, I think of the NICU. Or labor & delivery. Anxiety will forever be tied to those experiences, and I've been fighting against the flashbacks every time I've felt anxious over the past few weeks. Even when I get anxious about work or any other normal thing...BAM!...Back at the NICU. Or in labor & delivery. It's frustrating. I'm frustrated that I still struggle with these feelings. I know I'll never be the same, and I grieve the person I used to be. Sometimes, I wish I could be just a little more naive again.

On balance, I'm glad today is over. I'm terribly sad that my little baby is growing up, and I'm so happy to celebrate his birthday with him. But, mostly, I feel relief. Relief that this year is over, relief that my son is doing so well, and relief that we get to put some of the most difficult parts of this battle behind us.

I love you Captain Stinkerpants. Thank you for being the Best Baby Ever.
Saturday, January 21, 2012

Whether it’s for a trip to the doctor or a walk around the block to maintain your sanity, you will need to ta
ke your precious little one outside at some point. It can be scary, and it’s true, germs are everywhere! Without being total germaphobes (ok we are a little!) these are the steps we have taken to try to keep our preemie protected when we are out and about.

  • First and foremost- HAND hygiene. Hands are the biggest germ magnets. I am washing my hands constantly and make everyone else do it to. When I’m out I rely on hand sanitizer a lot. I have one attached to the handle of each diaper bag, in both cars, and by my door when I come in to the house.
  • I am very careful about germ magnets (doorknobs, hand rails, money, elevator buttons). I try to open doors with my elbow or sleeve when possible or I will use hand sanitizer after touching these things.
  • We do go out, but stay outdoors for the most part and avoid closed off, indoor spaces with lots of ppl including indoor malls, grocery stores, and pharmacies (I think pharmacies are the worst!).
  • When LO is in his stroller or carseat I think of this as the “safe baby realm” (this is what our NICU considers the isolettes and anything that touches baby) when my hands enter the realm I sanitizer first. As long as they are only in that realm, I’m good, but when I touch anything outside, I re-sanitize.
  • To remind myself, I leave a hand sanitizer on his lap when he’s in the stroller (he’s too young to grab for it yet!). You could also attach one to the stroller handle.
  • While out, I wear LO a lot. Having him right on my chest in a sling or carrier means that I can head off well-wishers that want to touch him. Most of the time, ppl just don’t go for him because he’s right on my boobs :o).
  • When LO is in the carseat or stroller while out, I put an A+A blanket over it. I consider this blanket the “dirty” blanket and will touch it with non- sanitized hands to block a ray of sunshine from his eyes or quickly cover him up as a gaggle of cheek pinchers approaches.
  • If we’re out and someone (sweet old lady, friend’s non-sick kid) REALLY wants to touch him I try to direct them to his feet. I can say “I know, he’s so cute, look at these tiny toes!” or to the child “you can tickle his toes.” This keeps them away from his hands and face. If we meet up with close, not sick friends, that want to hold him, I make them sanitize first.
  • When we get home I wash my hands well, throw the “dirty” blanket in the hamper and then wipe down LO’s hands and face with a warm washcloth.
My ultimate protection, I believe, is clean hands and every precious drop of breastmilk I can get in him!
Friday, January 20, 2012
Before you start solids with your little one, please talk with your child's pediatrician and do some research.  What works for one baby may not work for another.  If your family has a history of food allergies, keep those in mind as well.

Stephanie has already told you about Baby Led Weaning.  Like her, I had never heard of BLW.  I was too scared to try chunks of fruits, veggies and meat with my guys.  They didn't even have teeth!  (Still don't at 10 months, but that's another post.)  I decided to follow tradition, sort of.

Many people will tell you your baby has to have rice cereal as his/her first food.  Others will tell you that adding rice to the last bottle of the night will help your child sleep through the night at an earlier age.  Both of my boys had rice cereal added to their bottles early on for reflux.  I can assure that it did NOT help them sleep through the night.  (Yet another post.)  Since rice cereal wasn't "new" to them, we didn't use it as our first spoon-fed food.

After doing lots of research, I decided that I would make food for the boys.  I enjoy cooking.  I could save quite a bit of money.  And, I would know exactly what was going into their bodies.  The best website I've found for moms that want to make their own baby food is Wholesome Baby Food.  I've used this site to guide my introduction of new foods to the boys.  They have great recipes, allergy alerts and storage tips.  

One of the biggest questions for all babies, not just preemies, is "When is my baby ready for solids?"  The answer to this varies from child to child.  I have one child that loves ALL food and will eat anything I put in front of him.  He will eat with a spoon or self-feed now that he's older.  He will grunt and fuss if I'm taking too long between bites or getting his food ready to eat.  His brother, on the other hand may be the pickiest eater ever.  He enjoys only a few foods.  He thinks the spoon is a torture device.  And he enjoys blowing raspberries just as I sneak in a bite of applesauce or peaches.  

Things to consider when deciding when to start solids:
  • Until 1 year of age, solids are just for practice.  Your child should still be getting the majority of his/her nutrition from breastmilk and/or formula.  
  • Begin with one meal a day.  Most people start with breakfast or dinner.  Once your child is doing well and showing interest in food, add another solid meal.  It's important that he/she continues to take the same amount of breastmilk or formula regardless of how much solid food they are eating.
  • Try, try again -- don't get discouraged.  If you try solids and your little one isn't making progress, continues to tongue thrust, or fusses during a feed......take a break.  He/she probably isn't ready.  Wait a week or two and try again.
  • Your baby should have good head control.  He/she does not have to be able to sit without assistance, but it's important that they can hold their head up and control it.
  • Make sure to space out the introduction of new foods.  Most pediatricians recommend following a 3-4 day rule between new foods to check for allergies.
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.

One of my guys finally came home after 140 days in the NICU.  His brother had been home for over 2 months.  Having everyone at home, sleeping under one roof, together was the best feeling.  I never thought it would be so short-lived.  After being home for 20 days, we ended up back in the ER which resulted in a 3 night stay at our local Children's Hospital.  

With my extensive "NICU mom" training, I knew how things worked.  I knew that I had to be my child's advocate.  Things to remember:
  • You know your child the best.  You know his/her norms.  If you feel like something is not right, take them in.
  • Bring a list of medications and dosages.  Be sure to include the strength of the medicine.
  • With young preemies, heading to the ER almost always results in an overnight stay.  Take a change of clothes and toothbrush for yourself.  If your child has a blanket, lovie or toy that is his/her favorite be sure to pack it as well.
While no one ever wants their child to be re-admitted to the hospital, sometimes it has to be done.  Since coming home in July, my little guy has been re-admitted twice for respiratory issues and once for surgery.  It's never fun, but you do what is best for your child.


Thursday, January 19, 2012
To start off, my son was born at 33 weeks 3 days, and my milk supply was low to begin with. Since he was in the NICU and I couldn't breastfeed, I pumped. I pumped about 6 times a day, even though I should have been pumping more. It was the most stressful thing I have ever dealt with because I wanted to breastfeed SO BAD! But since my supply was low, I felt discouraged. I was about to give up, but was told by my midwife to try domperidone. Well, I ordered it online, since I read many reviews about it, and people said they ordered it here.

It was a miracle, seriously. Within 2 days, my supply went up. Since I felt so discouraged and ready to give up, I pumped less and less. I was pumping only 1 time to 2 times a day, and so my supply went down even more than it was initially. But then once I started taking domperidone, it has been going up and up. I am so glad I did not give up.


Here is how it went:

Day 1, I pumped only 26 ml, pumped 6 times, that's what I got total.

Day 2, it went up to 80 ml, pumped 7 times

Day 3, it was 80 ml again, but I only pumped 5 times

Day 4, went to 86, pumped 5 times

Day 5, went to 94, pumped 5 times

Day 6, went to 108, pumped 5 times

Day 7, went to 123, pumped 5 times

Breastfeeding seemed impossible because not only was my son fed by bottles since the beginning, but my supply was also low. Well since it's been going up, I've started working with him on breastfeeding with the nipple shield. And it worked! He seems to be getting a lot, since before when I tried he would cry since not much would come out. Domperidone has saved me, seriously. Now I am breastfeeding and pumping, so I can't tell exactly what amount I'm getting. But I get about 2oz each pumping after breastfeeding and that's just almost 2 weeks being on it. I do still have to give him formula, but we're working towards maybe getting rid of that altogether. He eats so much, and I am not able to give him just breast milk at this point. Maybe it'll happen though! I have hope, since it's increased my supply so much from when I started, even if it's not a lot yet, it's on its way up.

Honestly, i didn't think there was hope for me, and right now I'm just trying to build my milk supply back up, and then hopefully get more and more. As you can see there, my supply was VERY low because I almost stopped pumping all together, so I had to build it back up again. Right now I take 3 pills 3 times a day.

I would highly recommend Domperidone to anyone stressed about their supply, or feeling like there's nothing they can do, and want to give up. Try this, it really did work for me, and I couldn't be happier. I hope it will keep increasing, but at least I now have hope instead of feeling awful about it and crying over it so much. I felt like I failed him as a mom, but now I feel better and hopefully it'll just keep getting better and end up at a point where I can actually freeze some too.
Sunday, January 15, 2012
Kevin, born early due to pre-e.



I posted before about my son’s early arrival and about how my pregnancy suddenly turned high risk but what caused these problems?  What is preeclampsia?  Who does it strike and what are the chances of recurrence?

According to the National Instituteof Health “Preeclampsia is when a pregnant woman develops high blood pressure and protein in the urine after the 20th week (late 2nd or 3rd trimester) of pregnancy….The exact cause of preeclampsia is unknown. Possible causes include:  Autoimmune Disorders, Blood vessel problems, your diet, and your genes”.

So that definition isn’t too helpful. 

Also according to the NIH site “Risk factors include:  First pregnancy [check!], Multiple pregnancy (twins or more), obesity, Being older than age 35 [check!], and History of diabetes, high blood pressure, or kidney disease.”

When I started my pregnancy I was at a healthy weight with no personal history of diabetes, high blood pressure or kidney disease although I have a strong family history of high blood pressure.  From the moment I conceived I was at the doctor’s office at least once a month – much more frequently in the beginning when I was followed by my Reproductive Endocrynologist until I was 12 weeks pregnant.  In addition to seeing my OB monthly, I was also seen a couple times by Maternal and Fetal Medicine – a high risk OB.  So I was really getting the best care a woman can get while she is pregnant and yet I still got sick and had a very scary experience.

At each monthly OB appointment my blood pressure was taken and my urine was checked for protein.  This is standard procedure for any pregnancy and for me; nothing rang an alarm bell until I hit 23 weeks.  At 23 weeks, 3 days I had a monthly OB appointment at which my blood pressure was 161/85.  Blood pressure in excess of 140/90 is a sign of preeclampsia.  I monitored my blood pressure at home for the next two days and finally called the doctor’s office when my pressure read 175/90.  The nurse checked the results of my urine test and immediately sent me to Maternity Triage at the hospital.

For the next two weeks I flirted with preeclampsia, taking my blood pressure multiple times a day and calling my doctor to tweak my medication.  Finally at 25 weeks, 3 days I was admitted to the High Risk unit, placed on magnesium sulfate (to prevent seizures) and monitored 24/7 for the next week.  I was also given a steroid injection to speed up development of my son’s lungs.  A week later my body stopped cooperating – my blood pressure continued to rise and no amount of medication could get it back down, my liver enzyme count was rising and my platelet count was falling.  I was scheduled for a C-section at noon.

Since my son was born I am sometimes asked why he came so early and what I did to cause the preeclampsia.  While there are many suspected culprits in the cause of preeclampsia very little is actually known.  Could I have exercised more?  Yes but my RE told me not to exercise because we had stimulated my ovaries and one ovary was wobbly (it actually caused me a sharp pain with anything more than a moderate walk).  Could I have eaten better?  Sure but I wasn’t eating much at all so really, anything I found appealing I ate – one week that was caprese salad for lunch and dinner daily.  Really I was a normal pregnant woman until the day I wasn’t.

The typical treatment for preeclampsia is bed rest, drinking lots of water, taking blood pressure medication and reducing salt.  Those buy time – in my case the treatments bought me three weeks.  That doesn’t sound like much but it was absolutely life or death for my son.  According to a recent preemie study in Sweden among babies born alive at 23 weeks, 53% survived; at 24 weeks, 67% survived; at 25 weeks, 82% survived; at 26 weeks, 85% survived.  So you can see that every day I was able to stay pregnant brought us closer to a better outcome.

Currently there is only one cure for preeclampsia – the delivery of the baby.  Even after delivery there is a continued risk of preeclampsia and stroke for up to six weeks. Research to identify the cause and develop an effective treatment for preeclampsia is ongoing (while this headline looks promising it’ll probably be years before this bears any fruit). ThePreeclampsia Foundation is a good source for further information.



Saturday 11th June 2011 –
Freya Catherine Hemmett’s dramatic arrival into the world!

I have just worked out this may be the best way to explain how Freya arrived so early as some people know and some don't... :) However, FOREWARNING: WHILST I HAVE STRONGLY EDITTED THIS, IF YOUR STOMACH TURNS EASILY, DO NOT READ! ;)


 

SO…. Before I go any further, throughout the first part of this – the labour - I need to re-iterate that at no point did it occur to me that I was in labour…

I had been ‘in and out’ of Basingstoke Maternity Day Assessment Unit (MDAU) throughout the week prior and then finally signed off sick for a week with high blood pressure and advised by my doctor it could be longer (Thursday early am I went in with Braxton Hicks & was told I wasn’t in labour & didn’t have an infection so no reason to suspect I would have her early). Then on Saturday morning, I woke up at approximately 5am, feeling ‘liquid’ down below. Thinking I’d had a pregnancy related accident, I got up and went to the bathroom, grabbing a towel, then went back to bed. I don’t know how close together this happened but I started to get a pain across my lower back, like sciatica, and a pain in my lower tummy, assuming it was Braxton Hicks/ IBS. I took paracetamol but due to how early I’d woken up I was really tired so wanted to try lying down to sleep, every time I lay on the bed, I’d get another pain and I couldn’t find any position that was comfortable. Rob woke up so did things like rubbing my back. In the end I told him I needed something so I could sleep, could he call an ambulance? He said he’d call the MDAU. He did that but due to the pain I was in it was hard to explain what I was thinking (which was that I needed something to help me be able to lie down for more than 2 seconds, in order to rest because I was concerned that I’d get to the point of being so tired everything would give way and I’d hurt myself/ baby). So they said they could make an appointment for 8:30am but I said I couldn’t make the half an hour drive to the hospital so ‘don’t bother’. I think we had a little argument, when I asked Rob to call an ambulance instead as I couldn’t do this for another 3 months (ok, 7 weeks) until her due date. He pointed out that calling an ambulance wouldn’t make any difference.

So I carried on, with pain coming, I was really tired. Rob wouldn’t let me have anything more than paracetamol (I begged for anything, not caring that I wasn’t meant to take too many pain killers). Any movement (even talking or thinking) was agony so in the end I told Rob to lay lots of towels on our bed and go downstairs. So I was naked, our bedroom is at total mess because I was the only one in the room aside from our lovely cat, Firby, who sat on the edge of our bed for most of it – Rob came up at one point and opened the window but I asked him to close it at about 10:15 cos I was cold). I took 2 senokot, as well. I had also thrown the towel, which was mangled (it turned out that I thought it was the glue, it was actually my mucus plug. In hindsight, Rob and I have now realised what was my waters breaking and the mucus plug but at the time…). Rob had got up, showered and (on my instruction) gone downstairs but was still checking I didn’t want anything. At probably approximately 10:30am, I was lying on my right side, pushing, when I felt lots of water. I’ve had lots of UTI previously so thought ‘Come on Antonia, you cannot allow yourself to get more ill’ so I forced myself up off the bed, thinking I had to go to the bathroom. Having stood up, (my side of the bed there’s just eno room to stand up, with a wooden ledge round our bed) straight away again, I felt the need to ‘push’… I pushed as hard as I could… (by which point I didn’t care where I was) and Freya fell out, screaming, head first, onto the wooden ledge! I screamed… Rob ran upstairs, into our bedroom (he said he saw me stood there, naked, with his tiny daughter on our bed, attached via the cord, both of us screaming and crying). He shouted at me ‘pick her up’ (I think I’d frozen in shock) so I did, then he seemed to freeze in shock so I shouted 999 at him (don’t ask me why I didn’t shout ambulance or anything else!). He (I don’t actually remember this thinking about it) said he ran downstairs thinking his phone was there, and then upstairs then realised it was in his pocket! So he called, by which point Freya had stopped screaming (he’s stood next to me and Freya, still on the same spot by our bed) so I started screaming, worried she was going to die. She then cried again, the lady on the phone told Rob to keep us both as warm as possible, wipe Freya’s mouth, etc (weirdly, I think I calmed down a teeny bit and ‘sense’ kicked in cos as he repeated this to me, I was already doing that and talking gently to her). By around this point the ambulance had arrived so Rob ran downstairs to open the front door.

Crew was made up of 1 Irish Paramedic (IP) & 2 Male Technicians (Tech). So IP comes in & apparently said we all seemed incredibly calm – Rob said we weren’t but we think it was adrenaline/ shock, etc. I am now mortified and will never let my bedroom (or me for that matter) be that untidy again! Anyway, IP came in, opened a ‘delivery’ packet (that I still have), told Rob he was cutting the cord which in hindsight is funny cos I’d told Rob I didn’t really want him ‘down the business end’! Anyway, IP also told us he’d delivered his own child/ren and that most of them don’t get to see even 1 delivery so it was good. He was then concerned about getting us to hospital asap due to blood loss (apparently the local midwife had said wait for her and he’d overruled her). I didn’t understand at the time how ‘important’ this could be so actually remember asking if I could have a shower (I looked down and discovered blood was dried down my legs) but just put a dressing gown on over the ‘basics’ & flip flops… The knickers were then cut later in the ambo, so he could see if the placenta had been ‘delivered’…

I am trying to grab things on my way out that might be useful like I’d started packing a bag, my handbag, asking if the cat was ok, Rob mentioned our washing machine had broken so could leak all over the floor! Then having got in the Ambulance, the Tech left the door open so IP had to suggest he should maybe shut the door so my neighbours couldn’t see ‘everything’, then they couldn’t work out from the sat nav where we were going! My biggest concern was already just that having not enjoyed being pregnant at all for 32+4 weeks, I didn’t want Freya to die. So I remember talking some random rubbish – IP said we didn’t need to worry about the lights and siren and I said I wasn’t due to working for the Police (saying this whilst trying to hold Freya, I’ve never been in an Ambo before, never mind having just had a baby)… Then he discovered having got part way to B’stoke that the suspension on the Ambulance suspension wasn’t working – this was when I nearly fell off the stretcher & he’d nearly fallen on me trying to see how my bleeding was going…

So, we get to hospital (about 11:10am, Rob said that some idiot actually overtook the Ambulance on the way!) Freya is taken off me by a Nurse & Doctor – Bernie & Liz.

Before I forget: Rob has phrased it that Freya decided to ‘break her Ambulance virginity’!

So I am ‘wheeled’ on the stretcher to the MDAU… The next bit was EASILY the most painful bit for me. I had my legs put in ‘stirrups’ (I had only just started reading about birth plans prior to this and didn’t want stirrups!), I was supposed to 'lie still' with my back and bottom flat on the stretcher, whilst they ‘investigated’ what had happened. I had a drip put in my left wrist, an injection in both legs, gas & air with my right hand and was still in absolute agony, moving on the bed. Rob was on my left shoulder and said it was horrible because they were trying to do everything at once. In hindsight, I think they had to but I didn’t know that and we were both terrified, cos I’m in agony and we both want to know what’s happening with Freya. The nurse put her hand up inside me in the end to pull the placenta out, did the ‘stitch’ they have to do & then all I heard was ‘Volteral will help’ – apparently she was telling me she could put a thing of it up my back passage that would dissolve on it’s own. I’ve taken it before so I was just screaming ‘yes, just do it’! Rob said I kept pulling away and they kept telling me I had to stay still.


 
My parents arrived early afternoon, and I was allowed to have a shower… Which would have been fine except my mum insisted on sitting in the ‘toilet’ area to check I was ok, winding me up so I stood there, said I felt a bit rough and then the next thing I knew, I’d fainted (never done that before!) and slid down, so I’d bumped my head on the tiles and my mum was worried about the shower being on and me drowning!

I was kept in until the Monday, by which time I was desperate to go home as we were being given cards and presents, I hadn’t been home at all so didn’t know what state the house was in and was trying to get by on telling Rob what clothing etc I needed. Plus I was tired and sore. Oh yeah, then there’s also the ‘small’ factor that Freya was in the Special Baby Intensive Care Unit and I was slowly beginning to realise that she was really ill and I was absolutely exhausted, from everything that had happened and so many people (family) and trying to be ‘sensible’ for them!

I was finally able to go home, rest for about half an hour and then come back again with Rob to see Freya…

After that I wasn’t so bad, physically. The first week and a half I was expressing milk but hated it so the local midwife told me to stop! And Freya certainly doesn’t seem so far to have an issue with it. I told the midwife that I hadn’t been sure anyway, explained the circumstances and that I was really tired, hated it and she said she was going to tell me to stop as she felt that was best for me, if Freya was going to be ok. And at the moment, I don’t regret it. Rob asked how I’d feel (or have felt) when it looks like she’s ‘nuzzling’ for me when I have a cuddle but the only thing I’ve felt a little bad about is that cos she’s always been in hospital, if she’s been hungry I can’t just give her some milk.

So that covers the first few weeks of Freya’s life. She had various treatment for breathing but eventually the nurses realised that she was better not having the mask at all as she didn’t like it and then the same thing happened with feeding – she was taking what she needed from a bottle, then Monday 4th July we called the unit & were told she’d pulled her feeding tube out overnight & as a result they were going to discharge her!

Now she’s home and is just over 3 months old. The first 6 weeks or so of her being home, she was quite hard to look after as she’d scream every time we did anything, like change her nappy. She’s always been well behaved in other people’s company & now she’s such a cute & well behaved baby most of the time, a total Daddy’s girl and very sociable!



P.S. Just remembered: Just to clarify, 1) yes it did hurt, just because Freya was small & I only had 2 paracetamol does not mean it's any more comfortable! 2) Yes I did have 'stitches' (was advised they only do 1 long stitch now but I had one) 3) Freya seems to be fine now, just small so needs to gain weight. At birth she was 3lb 13, last week she was about 9lb. She's weighed fortnightly but that's the only 'check up' she has, unless I take her to the Doc's. :)
4) I actually wrote this a while ago but didn't get a chance to thoroughly edit it so whilst it is 'old' news for some of us, it does at least set the record 100% straight, as there was a bit of confusion. The most important thing is that we're all ok.
Thursday, January 5, 2012
Before I had a preemie I was sure that I wouldn't be one of THOSE moms. You know, the kind that go to the doctor for every single issue?

After my baby was discharged we were in at least one doctor's office or therapist session every single week for several months. Follow-ups, specialists, developmental checks, weight checks, reflux meds adjustments, regular check ups, therapy evals.....it was overwhelming to say the least. Add to that the fact that every time we walked into an office, all I saw were GERMS and felt and overwhelming need to cover my baby in a plastic bubble.

So I started asking other moms for their tips on managing doctor's visits. Here is what they had to say:

Bring food and bottled water for YOURSELF. Follow-up appts. often take forever. At first I always forgot food and I'd be miserable. If you are pumping and driving more than 30 mins to an appt, pump on the way there with a hands free bra so you don't have to worry about pumping. Bring your own pen. Offices (where there are SICK people) make you sign in an use their disgusting communal pen. BLECH!I always wore him into appointments. I hate the infant seat, it is so heavy. I'd rather wear him. Bring something to entertain yourself. Appointments take forever, little babies sleep a lot. It gets boooooring.

I have Mondays off of work so Mondays are my appointment days. It helps me to have it be consistently on the same day. So Sunday night I just have to check the calendars. Speaking of calendars, I use both my computer calendar and my phone calendar.
In the beginning, I had a chart created on word that had the time, med, dosage, blank spaces, and a key including how to make the formula with added cals. Now, I just know. After 8 months of being home, I have it down to a science.
I have a file folder where I keep all of his med info. I bring it with me when I go to a specialist.. But I am a freak and actually know everything in my head sooooo I rarely refer to the folder.
After I see a specialist, I call my pedi on the way home to update them. She has been great about communicating with the doctors too.
I agree with pp about bringing extra food, I also bring a few toys... You can wait for a long time!

As a twin momma...bring help whenever you can (although I admit sometimes its better for my sanity believe it or not, to go at it alone because I am just so used to doing it my way). I know what offices are helpful when it comes to having both babies in tow (our Ped and Eye Doc's office is fabulous, our Ped's nurse will walk out to the car to help me carry a baby in and so will the Eye Doc). Now that RSV season has hit in full force I try whenever I can to get a sitter for one baby if he/she isn't the one being seen that day. (This doesn't work out often, but it is great when it does.)
Always have extra bottles/food and/or feeding supplies (or for doctor's visits I bring 1 bottle per baby and will grab a bottle of the ready to go formula from the store to take instead of multiple bottles) because you never know how long you might be waiting.
When they were on medicine's I kept an updated list in the diaper bag to take with me, I also carry a small plastic file folder ($1 section at Target) with their most recent visit summaries in it so that if one doc doesn't have a copy of our most recent visit with another doc I can provide him with one. I haven't had any MAJOR issues yet with doctor's communicating together, the only time the Ped might not have updated info is if we see the Ped within a day or two of our last specialist visit.
And my biggest life saver of all is a good day planner, I am a visual person so it helps to see what we've got going on that week. I've got one of the ones with tabs for each month- a month at a glance & then pages for daily planning. Where the pages for daily planning are I jot down the appt info as well as the address/location and phone number for that visit so I have it at my finger tips. I've also tapes the cards for all the doctors to the inside cover of the book so they are right there as well.
I confess, I probably wouldn't be this obsessive and organized if they weren't preemies with lists of doctors, meds, etc.

In an age were it can seem easy to keep track of all doctor visits and other records on a cellphone calendar or find an app to joint notes, I find that traditional paper and pen method is best. I carry a small pocket size calendar were I can get a tangible look at our schedule. I also have a thin business card holder that I can easily insert into the fold of the calendar. Whenever I visit a doctor or clinic I grab a card and stick it in the insert. This way, if I need to call to make or cancel an appointment it's all in one spot. I also carry Isabella's immunization card in the there. I have several copies if our discharge papers that I give to all our doctors. This way, when were done with an appointment I ask if they can please mail a report to the pediatrician listed on our discharge papers. So when we go see our Pedi, he has all the reports and we can discuss "were to go from here".
Also.... I always ask that I be contacted by cellphone, since I always have my phone around. Before, I had listed my home number as the primary number and if I got called when I wasn't home (usually when office is closed) I would sometimes forget to call back.

Our baby has a "calendar" I carry around with me - we note everything in there, her meds/dosages are in the "notes" section, I note every time there is a change, I also carry copies of discharge papers and when we see any specialists we ask for a copy of their narrative report, I provide all the copies myself to her pediatrician. We also have a wall calendar in the Kitchen - I add all her appointments on there as well because we use it with her Nanny - We also use the kitchen calendar to note which one of us (DH or I) are taking the baby to the appointment and when we are working/off work etc. We have a medication/feeding schedule on the fridge and I have an app on my Ipad where I track baby's weight, height (it plots her growth chart) etc.


I always figure my day out prior to the appt as far as feeding goes. I always adjust their schedule so that they eat prior to the appt. As far as keeping track of the appts I use a simple wall calender since I am a SAHM its always there and... i can look at it. Always bring change of clothes and blankets in case you have to undress your baby and then have to wait forever for the Dr to come in. Bring a toy or two for your LO, but bring rubber or plastic toys so that you can clean them properly after you get home. Also if you have two LO's I wouldn't go by yourself. There is no way i would ever dare to go on my own.




Tuesday, January 3, 2012

NICU veterans share these words of advice for parents whose babies are nearing discharge:
  • "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



























Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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