URGENT: Sign the Preemie Petition NOW and PASS IT ON!: http://www.petitionspot.com/petitions/preemies/

Hi Everyone,

I am excited to introduce Nigel from the UK, a Preemie Dad. We are doing a US vs. UK blog post about our family experiences in the NICU/SCBU. Enjoy!

Intro (Child's first name, gestational age at birth, weight, length and complications plus length of stay in intensive care)

Deb: My daughter is Rebecca Discenza, also known as Becky. She was born at 30 weeks at 2 lbs. 15.5 oz and was 16 7/8" in length. Becky stayed in a Level III Neonatal Intensive Care Unit (NICU) for 38 days battling three heart defects, apnea and bradycardia spells as well as a nasty case of reflux. She came home on an apnea monitor and oxygen and wound up back in the hospital five days later due to feeding issues. She also came home with a team of specialists (Cardiologist, Pulmonologist, Ophthalmologist, Neurosurgeon) and home healthcare nurses.

Nigel: Eoin Bailey was born at 26 weeks at 2lb 4oz. He was in a Level III NICU unit for about 71/2 weeks and then was transferred to a Level 2 unit for a further 51/2 weeks. He came home 4 days before his due date. Eoin's complications included bleeds on the brain and several infections including meningitis shortly before he was due home. Slowly but surely he has been discharged from his consultants.

General question regarding rough set up of neonatal care in our respective countries (different levels of care in different hospitals, networks of hospitals etc)

Deb: My daughter’s hospital like many in the United States are teaching hospitals and are often part of a large network of regional groups. There are private hospitals as well in the outlying areas. The NICUs fall into Level I, II and III with Level I providing care for the late preterm babies and the Level III units are for the sickest babies.

Nigel: Hospitals are arranged within regional networks (England has 24 networks). Within each network the intention is there is a mix of Level 3 (NICU), Level 2 (SCBU) and Level 1 (high dependency) units, typically 1 or 2 Level 3s and more Level 1 and 2. There are no private neonatal services in the UK.

How was your experience with labor and delivery at your hospital? How was the staff helpful/not helpful?

Deb: The check-in bed unit was simply awful, with a nurse telling me that had I contacted the hospital sooner about the preterm labor sooner that they could have done something to help me. This was after I had warned my OB a month prior that I was concerned that this baby was coming early and I was told it was just my hormones overreacting. Lovely! In the Labor & Delivery room, I had great nurses, but the one that drove me nuts and helped me the most was the one that helped me learn Lamaze in literally 5 seconds and 10 minutes prior to my daughter’s birth. It was total chaos but when I heard a very tiny kitten-like cry out of my daughter, it was so worth it.

Nigel: My wife was in hospital with pains and bleeding for 10 days before Eoin was born. Although the doctors were sure he wasn’t coming, Eleanor was nevertheless given steroids 'just in case'. As time went on, irregular contractions became more regular, but only in the evenings. For three nights, Eleanor was moved up to the labor ward, only to come down again the next morning. During this time we were spoken to by a member of the NICU staff, but didn’t see the unit itself. On the final night, we again went up to the labor ward and after a terrible night during which we were told that Eoin wasn’t coming, a nurse finally recognized that Eleanor was in labor and 18 minutes later he was born. With an APGAR score of just two, (it had risen to a score of four five minutes later) he was little more than a lifeless grey mass.

How were you introduced to your preemie for the first time? Was it in the delivery room or in the NICU? What was that like?

Deb: Shortly after birth the NICU staff took over and assessed my daughter while the OB doc attended to me. Then I turned my head and they held up Becky to me for a second and I locked eyes on her. Thankfully they had a blanket wrapped around her tiny body so all I saw was what appeared to be a large head and her face. Later my husband had the staff wheel me down to the NICU on the stretcher to see Becky. I was very out of it and didn’t realize what had happened until we got in there. There my daughter was on the warming table with all of these tubes and wires and she looked really unhappy. I felt so out of control and my brain was not exactly in gear. Next thing I know I am being pulled back into the patient elevator, brought to my room and told to rest. Yeah, right! Needless to say I didn’t get a lot of sleep that night.

Nigel: I was briefly allowed to see Eoin before he was rushed off to the NICU by the crash team. He was in a plastic bag and lifeless. Eleanor wasn’t able to see him. Because he was so poorly, it was then 6 hours before we were allowed to go down to the NICU and see him. I have blanked out much of that time but remember the feeling of being completely overwhelmed by all the monitors, alarms and leads. I don’t have any recollection of Eoin being on a ventilator – he was fortunate to be on that for only 24 hours or so before going onto CPAP. I do remember though the feelings of hopelessness, panic and fear.

What did you like best about the NICU staff at your hospital? What do you think could have improved?

Deb: I loved the nurses in the NICU. They were a great emotional support to my husband and myself during Becky’s stay when no one else around us had a clue what we were going through. The only areas I would have improved would be to have the nurses start talking about breastfeeding earlier and note that it is a long process for a NICU baby and that just pumping breast milk is a great thing to do. I also would want them to talk about infant massage techniques and skin-to-skin/Kangaroo Care as well as these topics never came up and I was the person who found out about it and requested KC'ing time and time again.

Nigel: Most of the staff were absolutely great. In particular in the early days they were very keen to ensure we understood the alarms and procedures and to keep us up to date with progress (or otherwise). Often the nurses were overstretched which did mean that things like kangaroo care were harder to organize. I would say there were some staff that were great and if one of them was looking after Eoin (the nurses rotated their care) it was a happy day. Others though left you wondering if Eoin would be looked after at all overnight.

What were some of the hardest moments in the NICU for you?

Deb: I would have to say that it is an even split between the first time I met Becky in the NICU when I was on my stretcher and when I saw her again the next day. The next day she was in an incubator. I had yet to touch her but now I was told I could reach into the incubator "port holes" and touch her for a very short period of time. Meanwhile Becky is on her medical equipment and is obviously a mess. At one point she turned blue, alarms when wild and I screamed for a nurse. After Becky was attended to, all I could think of was "What have I done to my poor child? Is she going to get out of here alive? Is she going to eventually be able to walk, talk, or breathe on her own?" I had very little in the way of answers early on and it scared me to death.

Nigel: The hardest moments were often around the hopelessness of the whole thing. Eoin was our baby and yet for the most part there was little we could do of significance for him and had to accept we had a long road ahead of us where his care would primarily be from nurses. This was made worse when Eoin was transferred against our wishes to another hospital that was further away from home. I could no longer go in on the way to work, it took twice as long to get there, meant Eoin's siblings saw him less and made things like establishing breastfeeding harder for my wife.

The absolute hardest moment though was a few days in when I guess I was grieving for the 'normal' birth we didn’t have. I felt so desperately sad thinking about what might have been. Eoin had several bleeds on the brain and an enlarged ventricle. What might he have achieved without this? Why him? As time goes on though, these thoughts did go and you just learn to accept that Eoin will be what Eoin will be. Since then, we have been amazed at how well Eoin has done and having seen some term babies coming into the NICU with severe problems, there really is no guarantee of safe delivery at any gestation.

When and how you were able to have Kangaroo Care?

Deb: This actually makes me laugh every time. I was able to do Kangaroo Care because my mother-in-law mentioned to me early on, "I wonder when they will let you do Kangaroo Care?" and I, in my postpartum hormonal nuttiness immediately thought, %quot;Kangaroo Care? Where is the Kangaroo?" So I had to ask for this from the nurses several times and it took a couple of weeks before it actually happened. They eventually brought out this weird lounge chair thing and told me to sit down while they tipped me backward. Good grief! They pulled Becky from her incubator and laid her on my chest. My first thought was not exactly motherly . . . it was more like "my kid is like a cold, clammy insect" but within minutes I found myself smitten with KC! My husband took one look at Becky’s blissful face on my chest and then one look at the stabilizing of her numbers on the monitors and said, "Deb you have to see the look on her face!" We were desperate to find a mirror but didn’t have one. So my husband sufficed with taking pictures.

Nigel: We had to wait several days for kangaroo care. Finally the day came, out he came, my wife settled down with him and then an emergency admission came in and Eoin went back into his box! Kangaroo care generally only happened once a day and so either my wife had it during the day, or I had it in the evening (depending on nurse availability). It made such a difference when he came off CPAP and into a cot rather than incubator and we could then essentially cuddle whenever we wanted. Even then it took some getting used to to not ask for permission to hold our baby each time!

What facilities did your unit have for parents?

Deb: Beyond the waiting room, lockers for personal belongings, and a breast milk pumping room, there wasn’t much in the way for the families. I am aware that my daughter’s unit was fairly old and that they are now preparing to re-do the entire NICU with private rooms and a full set of facilities for parents.

Nigel: The first hospital had 5 rooms for parents to stay. In addition there was a day room with kettle, microwave, TV and toys for siblings. The room now also has internet access. The second hospital was smaller so had 2 rooms and a more rundown kitchen. Both hospitals had screens for expressing. The first hospital had several rooms you could sneak into for privacy whilst the second did have a room for expressing.

How did the staff prepare you for discharge? Did you feel at all ready to leave the NICU?

Deb: The staff was very careful in making sure that we had the medical equipment companies involved in the training of the apnea monitor and oxygen. Beyond that we were expected to pass an Infant CPR class that we took through the hospital (which was super odd because there we were in the middle of a class with like 50 people with pregnant moms, their family members and more and then my husband myself. Needless to say it got even weirder when the instructor suggested we go around the room and introduce ourselves and tell a little bit about why we were there and immediately looked at me to go first. You could have heard the collective "gasp" of that group a mile away when I noted that my daughter was in the NICU and then the collective “relief” when I stated that she was doing well now and would be coming home soon. I didn’t want to freak out the parents to be but I also was acutely aware of how abnormal my situation was and I did everything I could to avoid hiding under the table. It was super awkward.

Nigel: ‘Prepare’ might be stretching it a bit! We arrived that morning hoping Eoin would be discharged but not knowing for sure (it had been delayed a couple of times due to meningitis and other infections). When we got there we were told he was coming home (with canulas in each hand for continued iv antibiotics during his first week at home), and were quickly shown through his enormous bag of drugs, were shown the CPR dummy and had a quick practice and then we were allowed to take him home!

What was the first day/night at home like for you?

Deb: It was surreal because here I am telling the NICU nurses that I am terrified to bring my child home and they basically shoving me out the door! Thank God for my husband because he did a lot to calm me. After all of the chaos we had been through prior to that the ride home and going into the house was super calm. No one was there to greet us at our instructions, so we kept things really simple. And yet despite this I was freaked out every time that darn monitor went off and I found myself more times than not reviewing the Infant CPR guidelines because I was so nervous. That night I think I got about an hour or two of sleep. I was a wreck the next morning.

Nigel: The first day was one of pure relief as well as being terrifying! All of a sudden here he was. After going to the hospital for 101 days straight it was over. And it was totally over to us. We had kept it a surprise from his siblings just in case he didn’t come home that day and they were absolutely delighted to come home to find him there!

What were some of the hardest moments in the homecoming for you?

Deb: Our first issue was trying to keep Becky eating. She wound up in the Pediatrics ward 5 days after coming home due to feeding issues and ongoing apnea alarms. I don’t think we slept much in those first 5 days and by the time the doctor took one look at us and mentioned admitting her so they could run tests and we could go home and catch up on our sleep, I felt drained. The second issue was handling all of Becky’s various needs throughout each day with medications, feedings, checking her medical equipment and having to handle the home healthcare nurses coming through to download data and such. Oh and then throughout all of this I was on an every 2 hour breast milk pumping schedule. It was insane! The third issue was handling all of the "gawkers" that we had in family and friends who seemed desperate to meet the "tiny" baby. As it was full-blown RSV season I was a complete freak about hand washing and had no qualms about telling people to not come over to the house. I learned quickly that my Address Book of friends was changing right before my eyes. They didn’t get what we had gone through and they were not very helpful with their "relax, she is out the NICU" comments and more. The professionals totally got it and I found them a powerful set of allies in keeping me properly educated and to understand that the general public is going to have inappropriate comments and uneducated opinions.

Nigel: Despite having two older children, just generally looking after Eoin was so much harder due to the natural inclination to over protect him and worry about what might go wrong. On several occasions in the early days he decided to stop breathing and went blue with us desperately rubbing him to convince him to pull himself together! We then went through a zinc deficiency problem resulting in open sores all over his body (and resulting in a paper for the medical staff treating him when they finally identified the source of the problem). Finally, 3 months after he had come home and on Christmas Day, Eoin was readmitted to hospital with bronchiolitis for a further week.

What national/state/local services were available to you in the NICU and after discharge?

Deb: My daughter did not yet qualify for the state therapy programs so we were able to sign up with the local Health Department’s Infant Monitoring Program where a Social Worker would come out and check up on Becky and us each month and then a Physical Therapist would do an evaluation every few months. Early on the team came out to the house because Becky was on medical equipment and had a low immune system but later we went to their clinics. They were helping in letting us know when there were issues so we could get Becky evaluated by the Early Intervention team. Along with this we had the NICU’s Follow-Up Clinic where we had Becky evaluated by a full pediatric team at 6 months and then 1 year later. They used the data from those evaluations for research and as well as for us so it was a win-win situation. In end though, it was really the local preemie parent group, Preemies Today, that I found so very helpful. This group of parents supported me online many a time that first year and shortly thereafter I joined their Board of Directors and have since volunteered ongoing.

Nigel: All services for neonates in the UK are national (there is no private NICU in the UK at all). Eoin was seen by the paediatric community team for a week after discharge for antibiotics. Other than that he was seen by the health visitor at home. In addition he was under several consultants for general neonatal care, child development, respiratory etc etc. These gradually discharged him to the point where it is now just a respiratory consultant and ophthalmologist who is monitoring his progress. In addition to the medical care, the national premature baby charity, Bliss, has been a great source of information and support. There is also a local support group run by parents at our local hospital.

What advice would you give another parent with a baby just entering the NICU? Preparing for discharge? And, finally, at home?

Deb: First off I would tell a parent that he/she is not alone and that while their child is unique and special their preemie issues are not and that there are information and support groups out there. I would also, if you don’t mind, recommend the new book that Nicole Conn and I wrote called The Preemie Parent’s Guide to Survival in the NICU that can be found on our website at www.PreemieWorld.com. I would also recommend they go to the website to check out the "Freebies 4 You" section, too, as we wanted to create some items that families could use here and now in the NICU stay and right at discharge.

Nigel: First bit of advice is to remember whatever happens you have just become a parent – congratulations! Too few people (friends, family) feel comfortable saying ‘congratulations’ in the early days, ‘just in case’. The number of people who only sent cards once Eoin was home! I would also say you need to remember you need to accept help from anyone who asks for it, and make sure you rest – you have to stay strong yourself. On preparing for discharge I would say that you need to ensure you are happy with the drugs or other treatments that will be coming home with you and don’t be afraid to ask questions. It will be an incredible relief to be finally coming home, but also is a very stressful time. Finally, once you are home, try and enjoy it!

Were you transferred between hospitals and for what reason?

Deb: As Becky was born in a Level III NICU; she was able to receive her care there right away. We were really lucky to have that already in place. I feel for the families that have to travel hundreds of miles back and forth each day just to see their baby at the new hospital. It is especially hard on the siblings as then they are also feeling abandoned. It creates great strife for all involved.

Nigel: The way that networks are organized in the UK means that whilst on the one hand it guarantees each network has hospitals at each of the 3 levels, for those living near the boundaries, your local hospital may not be in your network. Whilst Eoin was born in our local, nearest, hospital (level 3) , once he was well enough he was moved to a level 2 unit in our network that although twice as far away, was considered our local hospital using the strict network guidelines. This was incredibly difficult for all of us for many reasons, predominantly the reduced time we got to see Eoin each day due to the extra travelling time.

I am excited to announce that little man, the Nicole Conn documentary about her baby and his preemie birth at one pound, is airing on these dates on Showtime Women:

On SHOWTIME WOMEN
09/02/10 at 11:25
On SHOWTIME WOMEN
09/02/10 at 4:35 AM
On SHOWTIME WOMEN
09/05/10 at 6:20 AM
On SHOWTIME WOMEN
09/05/10 at 2:40 PM
On SHOWTIME WOMEN
09/11/10 at 7:15 AM

Remember to check out the little man movie website at www.littlemanthemovie.com

Hi Everyone,

It is important for both parents and professionals to be aware of what types of regulations are being put in place in terms of health care. I know that when my own daughter was in the NICU that she automatically received the RSV Prophylaxis. Every preemie did, in fact, as far as I know, regardless of gestational age. Makes sense, right? Well apparently the CDC and AAP are working to change that regulation and have a strong focus on lessening or potentially rejecting altogether the RSV Prophylaxis for the 32-35 weekers. Why in the world would you allow a baby that was born early and with a comprised immune system to be put at such high risk for re-hospitalization?

The National Perinatal Association (NPA) highlights the reasons as to why this specific population needs to receive the RSV Prophylaxis. Check it out at: www.nationalperinatal.org

There is a special advocacy website called Preemie Voices and you can connect to it at:www.PreemieVoices.com

I am attaching a copy of the letter I drafted and sent to the ACIP meeting in June:

Dr. Baker,

I am writing to you regarding the current debate regarding the RSV prophylaxis and the proposed changes being addressed at the ACIP meeting in Georgia.

As a prominent leader in the premature infant parenting community and the parent of a former 30-weeker baby girl born in 2003, I implore your team to re-consider the importance of this prophylaxis from not only the professional point of view but also from that of the parent. Having both distinctions myself I feel duly qualified to speak of the following points:

• From a Professional Standpoint: The RSV Prophylaxis is one of many tools to help premature infants avoid re-hospitalization due to RSV. The reality is that the prophylaxis alone has proven its ability at avoiding re-hospitalization by 55%. Any premature baby born prior to the full-term gestation of 37 weeks is, quite simply, a premature baby. All babies born prematurely have immature organs and therefore a compromised immune system. So any baby born early, in my mind, is at an extremely high risk for RSV. For all of the medical efforts taken to save this early baby from death, disability and more and then to only consider risking its health and developmental catch-up further in the first year with little or no vaccination is unthinkable.
• From a Consumer Standpoint: As a parent who has connected with millions of parents worldwide in a professional manner and otherwise, I can assure you that having a premature infant is a life-changing event for the baby and the family. Watching your newborn baby be resuscitated, stimulated, and medically administered is horrific at best. And then to have that same baby handed over to you, the parent for discharge is terrifying at best especially when considering the fact that the family home instantly becomes the new healthcare setting full of medical equipment, medications, therapies and more. Within this new healthcare setting in the home, you are subjecting everything for sterile scrutiny so that the baby might survive and thrive in its first year. With so many factors at work in a home, it is humanly impossible to expect a family of a premature infant to handle this challenge themselves 100% of the time. There has to be another tool that can be used to ensure the health and welfare of that baby. That tool that so many families have and currently depend on is the RSV Prophylaxis. To take that away partially or completely from a family already struggling with the special needs of their child is cruel. Furthermore, the costs alone for re-hospitalization are way, way higher than that of the cost of the RSV Prophylaxis for an entire RSV season. Why would we want to subject a future generation already at risk in hopes of supposedly saving money especially when the NICU stay alone is already easily 5-10x that amount? This is a preventative cost and one that should be taken seriously.

I know all too well this issue because in 2003 I gave birth to Becky, a 30-weeker preemie girl weighing in at 2 lbs 15.5 oz who had a 38-day stay in the NICU at Inova Fairfax Hospital in Falls Church, VA. After a very scary rollercoaster ride throughout her stay we were fortunate to bring her home on medical equipment, medications and the large amount of specialist follow-ups and other therapies. My husband and I felt more like medical professionals than the parents of this tiny infant as we provided her round the clock care of medical equipment operation, medication dosage, feedings of specialty formula and kept a strong eye on any and all visitors throughout RSV season.Simply put, we feared that even as well-educated professionals that were aggressively trained at discharge, we were incapable of caring for our daughter outside of the NICU. What became our mantra to help her survive and thrive at home was that medical appointment every 30 days where Becky received the RSV Prophylaxis. It was the one tool where I felt someone was on our side helping us to keep Becky healthy. Becky received a full season of RSV Prophylaxis and I am proud to say she never got RSV that year. The following year I attempted to push for another round of RSV Prophylaxis for Becky but the Pediatrician said we did not qualify for it. Becky got RSV that second year and we had numerous years of working through her asthma that resulted from what was RSV. If I had the power to institute an extra rule, it would be to provide a second year of RSV Prophylaxis automatically to each infant born prematurely as it would help not only in overall health but also immune system catch-up as well as developmental catch-up.

I am hopeful that my comments have provided your team with insight from the two special worlds that surround that fragile baby. For the sake of those comprised babies,re-consider the RSV Prophylaxis recommendations and institute stronger measures so that this is no longer an issue.

Thank you for your time and consideration in this matter. Should you wish to talk to me further, please feel free to contact me at XXX-XXX-XXXX.

Respectfully,

Deborah A. Discenza

Co-Founder, PreemieWorld, LLC

Co-Author The Preemie Parents Survival Guide to the NICU

Member, National Premature Infant Health Coalition

Member, Operation Preemie

Founder and Former Publisher Preemie Magazine

Former Board Member, Mothers of Supertwins

Former Assistant Chairperson for PreemieCare

Former Board Member, Preemies Today

Hi Everyone,

So I would like to spread the word about a great non-profit that is giving away books that would be of interest to our audience. Please feel free to reach them directly at the contact information listed below.

So here it is from MOST:

We are closing out our book inventory in the MOST store and thought you, or someone in your network might be interested in requesting some copies. We have a number of titles, and here is the flyer with details: http://www.mostonline.org/BookClearanceSale.pdf Anyone willing to request a minimum of 10 books (any combination of titles that are still available) can do so, and we will send them for the price of shipping only. We are taking requests on a first come, first serve basis. Feel free to spread the word.
Thanks,
Lauretta Shokler
Technology Director
MOST (Mothers of Supertwins), Inc.
(631) 859-1110
www.MOSTonline.org
www.PreemieCare.org
Supporting Multiple Birth Families…Every Step of the Way
Learn more about multiples: www.mostonline.org/faqbf.htm

Call now and please spread the word!

Thanks!

Deb

Things have been super busy here at PreemieWorld, so I apologize for not blogging until now.

When you have a sec, check out Preemie Voices at www.PreemieVoices.com It just went live and there is a ton of great advocacy info on there. I would love to hear what you think about it!

Also if you are not already following us on Twitter, yet check us out at www.twitter.com/preemieworld/ for news and articles that may be of interest to you.

I just found a fabulous website for parents of preemies. This site is run through the American Academy of Pediatrics (AAP) and it is a great way to educate yourself on the needs of a preemie in the NICU. Pass it on!:

http://www.healthychildren.org/english/ages-stages/baby/preemie/Pages/default.aspx

Need more information on the NICU experience? Our special parent guide, The Preemie Parents Guide to Survival in the NICU, is in our online store, now!

Hi Everyone,

I am thrilled to alert you to Yamile Jackson and her company, Zakeez (www.zakeez.com) as well as her blog post (http://yamilejackson.com/blog) that will alert you to their FREE product giveaways.

On the PreemieWorld side of things, our preemie parent book is taking off in sales! Get your copy today in our PreemieWorld Store!

Nicole and I are super excited to announce that our new parenting book for parents of preemies with babies in the NICU The Preemie Parent’s Survival Guide to the NICU is out and officially on sale. Please feel free to check it out as well as our other products in our online store.

Also out on the market are our brand new “Baby Safe Packs” of thermal thermometers – a must-have for all parents of preemies as well as parents of non-preemies. These are also on sale in our online store here. This is a great gift for new parents from friends, family and more!

I understand that my daughter was born 10 weeks early. I know that my preemie required an extended stay in the NICU and require medical equipment, medications, and specialists to help her thrive. I put time in with Early Intervention and ChildFind therapists to help my child thrive developmentally. We are still working with therapists to ensure Becky continues to thrive. But as my daughter enters evaluation for high-functioning autism you would think that I have enough paperwork to fill a binder to just hand over to them, right? But no – it has to be THEIR mound of paperwork and their requirements. UGH.

Now I am all for appropriate privacy in healthcare but it does have to be appropriate. So why isn’t it possible to have my daughter’s records in one place where they can be accessed as needed by any medical professional? As long as security procedures are in place to avoid snooping, identity theft and more, I would be more than happy to carry around a card that allows access to her medical records. And then any new evaluations could simply be completed online and then ALL doctors could review everything at will to get a complete picture of my daughter overall. It would save them time dictating letters to be faxed to one another, it would more than likely help in the prevention of medical mistakes and it would most certainly keep me from having to fill out similar paperwork all of the time.

Common sense on this issue would save a lot of time, effort and oh yeah – TREES!