A few months ago I blogged about a US website, PreemieWorld that I'd come across. Since then myself and Deb, one of the owners of the site have exchanged a few emails and decided it would be interesting to compare experiences. Despite the best of intentions, this has taken slightly longer than either of us anticipated, but finally we have both completed our homework, and so here is the output. I'd be delighted to hear your comments...
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, “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. I
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.
A landmark! (104.26 miles)
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