Friday, October 26, 2007

Bonding with your preemie-Real World Experience

The article in my previous post has not left my mind. I could think of quite a few ways to complain about it, and all of the harm that article could do, but I've decided that it wouldn't be helpful to any new parents who are scared and need advice.

So here are the questions...

How did all of bond with your preemie?

Did it happen in the NICU or not until your baby was home?

Did your preemie seem to want to bond with you?

Do you have any suggestions on what actually did work to help you feel close to your preemie?

29 comments:

The Preemie Experiment said...

I can say, with honesty in the forefront, I did not bond with Paige while she was in the NICU. That even hurts to type it.

She was 90 minutes away from us. I had to give my company car back since I was not going back to work and hubby HAD to return to work. All of our family members worked and could not take me up there during the day.

When we were there, she was too fragile to touch (in the beginning). Eventually we did get to change diapers and hold her (Kangaroo style), etc. but I did not feel like we were bonding. I loved her from the very moment she was born but I did not feel a strong bond to her. I think I felt like a caregiver, more than a parent. I am not sure I really realized it back then though. It wasn't until our son was born 7 years later (barely a preemie) that I understood what "bonding" meant.

When we finally brought her home, our days were filled with feedings, weighing diapers (long story), therapy appointments and the many specialists we saw on a regular basis. Feeding her was not a good bonding time because she had to be held a certain way and we had to hold her mouth closed so she could suck on the nipple. If we tried to hold her, she screamed. The times when she was not screaming, you could not talk to her or she would scream. No swaddling-she hated it.

She is almost 9 years old now and we have a good bond, but it's all on her terms. Looking back, any bonding was always on her terms. I'll take whatever I can get!

I wish I had some good suggestions for parents, but I don't. My real world experience taught me that bonding was a process with my preemie, not something that was there from moment one.

The point I want to end on is this... If you are the parent of a preemie who is in the NICU now and don't feel a bond with your baby, you are not alone.

Bella B. said...

My preemie is my third child. When he was born (at 31 weeks), I had a 8 year old and a 4 year old at home. The hospital was 30 minutes away on a good traffic day. During the 7 weeks he was in NICU, I'd go when the 4 year old was in preschool. Once he moved to growing preemie (2 more weeks), where I could hold and feed and bathe him, etc., I'd go morning and evening.

There was this one nurse in the NICU I absolutely hated. When I'd walk in, she'd look at her watch. "You just now getting here?" When I had to leave to go pick up the preschooler, she'd say, "You aren't leaving, are you? You're coming back, right?" Frankly, I couldn't see a whole lot of benefit to sitting by his bed just staring at him. Sometimes I'd put my hand on his back, and other nurses would tell me it helped but I never saw any change in his vitals attributable to my being there. Twice, on weekends, we had nurses who were willing to tangle with the vent tubes to let us hold him. (Neither of those nurses were Ms. WhyAren'tYouHereMore.)

I remember wishing so badly someone would just tell me what was expected, because I was too tired to figure it out. So no, I wouldn't say we bonded in the NICU.

Anonymous said...

I've got to say I "bonded" much better with my twin babies en utero than I did in the NICU. I carried them from weeks 23-28, knowing they were sick, with one twin stuck in a corner of my belly due to lack of amniotic fluid, and thus could always tell them apart. Baby "a" loved music and her father's voice. Baby "b", the stuck twin hardly moved at all unless I was crying (frequently at night, given the uncertainty of their outcome) and then she would comfort me with this constant, almost rhythmic series of gentle tapping.

But at 28 weeks, baby "a" was stillborn, and "b" was in the NICU, for 8 1/2 days, until she died as well. I was incredibly weak after a crash section and many weeks of bedrest. My surgical wound had re-opened and was pouring out goo. There was no really good place to rest. There was one room in the NICU, with a place to lie down, but you had to share it with everyone else; we had to sign up for it by the hour. There were no really comfortable chairs for the bedside at the same height as the incubator. The maternity ward was unbearable with all the healthy crying babies being brought to their moms, and I almost left AMA. My daughter herself was fragile, and desaturated or became bradycardic if handled too much. When a nurse handed me a wee little diaper, about 2" wide, and offered to let me apply it to my daughter's invisible tush, I just declined. At the time of her death, which was sudden, she was doing well enough that I was close to getting to hold her, but I don't know how that would have gone.

The best NICU "bonding" was done by my husband, who spent an evening (by himself) photographing our daughter. I personally think bonding takes a certain amount of ability of at least one of the bonders to RELAX a little, which is very hard to do when your baby weighs less than 2 pounds, and is on a vent. Not to mention the lack of privacy in the NICU. And in any other area of the hospital that has pediatrics, the kid has their own room, and the parents access to a bed at their child's bedside, and their own bathroom, shower, etc. The NICU that we were in was just not set up for the parents to vigil at the bedside, particularly not parents recovering from emergency surgery. I feel that the NICU capitalizes on the lack of "bond" to keep the parents from being there all the time. If you compare it to other areas of the hospital, most notably pediatric ICU, which would have a similar concerns for how ill the child is, in the NICU the nurses/doctors just seem to maintain more control. I think this hugely affects bonding.

sce

Anonymous said...

You know, I started out typing out a long comment about how even though I didn't even get to see my son for several days because I was too sick, then I couldn't touch him, let alone hold him for many weeks, and the nurses were his caregivers, blah, blah, blah, I still felt a strong bond with him. Even as I was typing it, I knew it was a lie, but we're supposed to bond with our babies immediately. So, I erased it.

The truth is: I had a 21 mos old at home who I was abandoning to go to the hospital every day, a husband who lost his Dad, to cancer, in a hospital, on a vent and feeding tube, the very night we conceived our son, so he couldn't deal with seeing our son in that state, any family and friends who might be supportive lived far away, I quit my job the day my son was born, and I would often sit in the NICU holding my son wondering what would happen if I dropped him.

WOW! That's the closest I've ever come to saying that out loud before. It makes me cry, even now, 3 years later.

So, no, there's no real bonding in NICU. How can there be, when you are surrounded by medical equipment, nurses, other families, sickness, and death? My daughter was FT. and I don't think I even bonded with her in the hospital. Trying to recover from a c-sec, nurses in and out? The real bonding happens at home, when you can ahve your own space and do things your way.

Michelle (yes, that Michelle)

Kathy said...

I wrote some thoughts about bonding with my daughter. And then deleted them, because I just wasn't brave enough to tell the truth on the internet, even anonymously!

I wasn't even sure what bonding was SUPPOSED to be like, so I looked it up. And a lot of it seems impossible in many NICU situations. If your baby can't enjoy touch or make eye contact, breastfeed, or be cared for primarily by you, that's most of the tools of bonding taken away.

Did I feel ownership and a connection to her? Yes. And no. Did I love her? Very much, but I was also traumatized and had complicated emotions. Really, the early days in the NICU were like a very, very surreal gestation, nothing like having a "real" baby. So, I felt attached, but not really any more attached than I felt during pregnancy. Kick counts and ultrasounds, NICU photos and weighing diapers . . . totally different things, and yet the NICU was in many ways more like my high-tech pregnancy than it was like caring for my baby, now. (Disclaimer: mine was a healthy gainer and grower, I'm sure it would've been a different experience altogether if we'd had any real scares in the NICU.)

It seems like bonding is often a process, and the main tool is taking care of the baby. So, if you can't take care of your baby for a long time, it makes sense that the bonding process will take longer, or be different.

And, I think the first three months are hard for most parents of FT kids. Waiting for that first social smile, the pay off for all those sleepless nights, poopy diapers, etc. I suspect that people are designed to last about 3 months at that pace, no more. So, when it takes 5 or 6 months to get to age 3 months, or when you never really get to that stage, that just SUCKS.

the last spartan said...

Just to give some perspective; In 1969 when I was born, neither of my parents got to touch me when I was born. I was behind glass for the first five weeks and nurses held me up to the glass so my mom could see me. She had no education to speak of but she sat at the window every day during the dead of winter (even during blizzards) because she felt that somehow I knew she was there. I can't say that my mother did any bonding with me until I was at least five weeks old when she first got to touch me.

The nurse who took care of me most did bond with my parents and always kept in touch over the years. She and I have met up several times and she was a great help to me when I was having life crisis a few years ago. She is my biggest fan and when I was published in the local newspaper last year she cut it out like she was my mom.

Bella, I would say to you that in my life as a physician in critical situations, I have always counseled family to not look at vital signs as a signal that the patient recognizes or is responding to them. I always work under the assumption that a connection is being made whether we can detect it or not. You were there for your child even if you felt like you weren't providing anything. Conditioning studies show us that there is power in human touch for infants. Consider your job done even though you didn't feel as though you did anything.

Some good did come of it but not necessarily bonding between myself and my parents.

To

Helen Harrison said...

Bonding hadn't really been "invented" when Ed was born in 1975, so I was unaware of it.

I'd seen my mother with both my younger brothers (born when I was 8 and 11) and knew that early parenting was just plain hard and stressful under the best of circumstances, so my expectations for what awaited me were not high.

But I had no idea how bad it was going to be...

Nevertheless, I'd have to say that I "bonded" with Ed during pregnancy. He was my first pregnancy, and I was fascinated by the entire process. I read everything I could find on fetal development, and had a mental picture of what my baby looked like at every stage. I also pictured what I imagined to be a genetic mix of my husband's and my traits (difficult to do since he is blond and blue eyed, and I'm a brown-eyed brunette -- and the differences don't end there).

But somehow, when Ed was born -- even prematurely and traumatically -- he looked exactly as I had imagined him -- the same dimpled chin, the same familar expressions. I thought he was beautiful, but I also knew that his outcome would not be good and that we were facing a tragedy whether he lived or died.

The biggest challenges were the roller coaster of diagnoses, the passive-aggressive attempt by the MDs to remove life-support, and his many later disabilities.

We were told right after he was brought home from the NICU that he was blind. Then one night I was holding him and he smiled back at me responsively. I was amazed, and very happy to learn that he wasn't totally blind after all.

But then there were all the medical crises and shunt revisions, and the utter fatigue of never sleeping and the constant, brutal string of shocks.

When he learned to read --I'd been
working with cards to teach him letters and numbers when he was 2 and still hardly walking-- this
was a major "bonding" time for us.

He was discharged from follow-up at age 3 as intellectually and socially advanced, but it soon became clear that he was not going to fit into any preschool environment, and we were going to have to try a special school.

I was 6 months pregnant when I went to look at the special school that had a slot for him. I drove home in tears and somehow, during the ensuing months I suspect that I subconciously tranferred my hopes to the new baby.

But today, Ed (age 32) and I are fairly well bonded, given his limitations. We communicate around music -- we both love the same stations, tapes, performers, concerts. And Ed is still trying to teach me to play the keyboard. He is very patient with me, and sometimes even affectionate.

But it is all on his terms.

Jennifer said...

I think I was very fortunate. I lived less than 5 minutes from the NICU and had no distractions for the first 3 weeks as I hadn't gone back to work yet. I couldn't hold her as long as I wanted until she moved to the step down nursery but I would get to kangaroo during her feedings. As a matter of fact I was FORCED to - the nurses made me, and as scared as I was I'm very glad they made the first move, I doubt I would have. The nurses were great and when she moved to the SCN I was able to hold her all night long as it was the only time I had with her (I had gone back to work). I felt a strong bond with her in the hospital at that point... but my time was also frustrating because we were working on breastfeeding (tried until she was 6 months old and then I resigned myself to pumping for 13 months instead).

I consider myself lucky. When I was born in 1978 my mother couldn't hold me until after I was off the vent (8 weeks!)- you just didn't do that then. The nurses did most of the bonding, but even then it was for a very small amount of time. Instead she pumped milk for the entire nursery (no lie). We lived in a major metropolis and she said alot of the babies there were born to mothers with drug habits who couldn't breastfeed and my mom felt very 'bonded' to all the babies because she was able to supply milk for them.

To this day my mother is a great friend and we talk nearly every day. I value my relationship with her and her 'preemie experience' more and more each day. They didn't have EI when I was young and from what my parents have said I had bigger problems than my daughter at this age but they never knew about them because no one made a big deal about it (ok, no one made ANY deal about it). She always says: "You didn't do 'x' until you were 4 months older than her and you turned out fine! Don't worry!". It's not that simple but it does remind me to relax :)

Anonymous said...

My twins were 31 weekers, world apart from micropreemies...nevertheless, it was still a difficult process. I was shocked to realize that my husband had bonded before and stronger than I had. They were in me, I fought so hard to keep them in place as long as I could, and he was more comfortable with the NICU than I was. However you have limitations when you're recovering from a C-sec and can't walk, drive, etc. Bonding in our NICU was strengthened by the wonderful nurses. Every day the night nurses took pictures of our babies so we could see what they looked like during the night. Sundays a photographer came in and free of charge took portraits, every Sunday, it was wonderful. I remember my discharge day was so painful for me, leaving them, a nurse practically forced me to change a diaper. I didn't want to and she pushed me and it was wonderful. She told me she expected me to be back the next day. It was what I needed to get in my head in gear. Another nurse called me on the phone when I was still in the hospital and told me they'd be expecting me in 10 minutes, find a wheelchair, and get to the NICU, I had children to meet. I was taken aback at first, then grateful for the kick in the butt! The diaper weighs, holding the tubes during feedings, etc were what did it for me. Pumping was the only thing that truely made me feel like a mother. Even at home, days when I coudln't get to the NICU, I had a job to do. The real true wonderful bonding occured only after I held them for the first time, but all the little things helped. Your NICU makes a huge difference and the staff who work there. I will never forget a few particular nurses and what they gave to me.

The Preemie Experiment said...

Thank you everyone. I know how hard all of your comments were to write. I know I cried through writing mine. Please know, through your sharing, you are doing something good. When other new parents see your comments, they will know they are not alone.

Last Spartan and Jennifer, your comments are very special. As a former preemie, you give us all insight to our chilren's lives.

SCE... nice to see you back. I think it's been awhile!

Anonymous said...

I've been thinking about this all night. I am the mother to only one child, a micropreemie, and we have 'bonded,' I suppose in a certain sense of the word.

I live 60 minutes from the NICU he was born, and I had to go back to work immediately despite advice from my physician not to due to the severity of my preeclampsia and C-section. I was only allotted 11 weeks of FMLA from my company though that is used for medical tragedy including maternity leave so I chose to go back to work. (I work at home, not a very stressful job). I wanted to save time 'in case' he came home.

I did not hold my son for 56 days. In fact, I did not see him for over 24 hours and I often did not go see him during my subsequent 5-day hospital stay. I did not want to love him and lose him. He was very ill in the beginning and for many months.

The bonding process began in the NICU, though. One nurse basically demanded that hubby and I make a CD of our voices for our son while we were gone. She said "it isn't fair that he doesn't get to be with you every day, and that's not your fault, but he can at least hear you." I made the CD and cried for an hour after it was done because I just didn't want to love my little guy in case I lost him.

He crept into my heart, though. Eventually, (after 6 months) I went to my employer and said I couldn't handle it anymore. I had to be with him. He was getting to old and wasn't showing signs of coming home soon and he needed a mother, even if it was for only a short time. Because of the flexibility of my job, my employer allowed me to move to the city the NICU was in, and because it is a children's hospital, they had excellent accomodations for family. I lived in the hospital for 2 months. This is where our bonding took place. I woke up every morning and saw him before I started work. I took my lunch break with him and was there for rounds. I got there immediately after work and stayed until very late hours. I held him for HOURS every day. I sang to him and talked to him and I was the first to introduce a bottle to him. We took naps together. I worked with the therapists and nurses, and I even asked cuddlers to come in and hold him in the hours I could not be there. Eventually he and I got used to each other... did we 'bond.' I'll never know.

He's not exactly the happiest baby in the world, nor is he the fussiest. He's generally uncomfortable from some aches and pains that he has, and he has some sensory issues. He doesn't like to be touched unless it is in a certain manner. He only wants to be held at certain times. Yes, this may be his terms, but I also don't always look at it this way. My mother is terminal, and she is in a lot of pain, and there are times when she only wants to be touched a certain way. I am grateful that she wants to be touched and still wants to show love and I do not feel bad that it is on her terms. In fact, I am grateful that I get to show her love, and that is how I feel about my son. It's just a different perspective that I must take in order to maintain my sanity sometimes. No, preemie parenting and preemie bonding isn't easy, and it won't be what you expected, but it is rewarding, a challenge, and I love my son nonetheless.

The CDs were the trick for us, and that we allowed any and everyone to come in and hold him. I wanted him to have constant human contact.

Sarah from PBM (I'm not linking to my blog for privacy of my mother)

Anonymous said...

Early bonding for me was impossible since it was several days before I even saw my preemie twins. I had complications following a crash c-section and was on bed rest. My husband, however, visited them frequently. Then, when they were a week old, one baby was transferred to another hospital for major surgery, and I was discharged. We lived almost two hours away and had a 20-month-old to care for. He had already been without his parents for 10 days and needed our attention. My mother was also terminally ill, so all-day trips to visit our babies was infrequent, though we called every day. When we did visit, we had to go to two hospitals, but they were just a few blocks away. Later, when one twin came home, my mom had had surgery the same day, and I had to leave him with a relative so I could check on my mother after getting home. (BTW, we were ORDERED to come get our son that day!) My mom was in intensive care...not to mention our oldest child was sick so his dad took him to his folks house out of town. A week later, my mom died, then a couple days after that our baby at home came down with pneumonia and was re-hospitalized in the big city at yet a different hospital all the way across the city from our other baby.
When both babies were finally home, bonding was difficult for a long, long time because we had so little rest, and there was no time for play like it was with our first child. The days and nights melded into one, and I often did not even know what day of the week it was much less the date. Feedings for the preemies were SO different than with our full-term son. While he would cuddle and fall asleep in my arms soon after feeding, our preemies screamed until almost time to eat again...both had colic.
They were sick a lot, and we were always at the doctor and always giving meds and doing therapy. I suppose therapy was our main bonding time when I stretched their limbs.
While we loved them very much, they were at least a year old before what I would call really good bonding could even begin.
We also regret that bonding with our oldest son lost ground during this time. We look back now and realize how he seemed to change from a happy-go-lucky toddler to a serious little boy overnight. We missed out on times that should have been fun for him. I think that first year was the most difficult on him.

terri w/2 said...

Bonding in the NICU for us was nearly impossible. .our daughters were there for 3 and 5 months and we lived 1.5 hours from the hospital. The NICU at that time was one big wide open room, with much activity. In addition, the NICU was very much in charge and let us know it! We had strict "rules" - no visitation during rounds or staff changes, no speaking or looking at (or even in the direction of ) other babes. The first time I visited, I reached into the porthole to touch one of my gals only to be confronted with an angry nurse that said "she's going to have blood gases drawn in 5 minutes!" Which of course meant NOTHING to me at that time - I was totally confused as to why was she obviously angry that I was touching my baby. That did not do a whole lot for a bonding experience.

We waited for 2 months to hold our second daughter, only to have that special moment ripped from us. . my mother went to visit one day and gleefully called me to let me know that they had let her hold our second daughter that day. My mother got to hold her before I did. It still bothers me today that this happened. How cruel to deny a mother this.

Bonding is not something I believe happens in such a traumatic environment. When we got the girls home, I found it easier to bond with our second daughter, who did respond more like a typical infant. Our first daughter who had had a grade IV IVH, and was severely medically fragile, bonding took much longer. I was in day-to-day survival mode for a number of months. Once she came off of meds, had her shunt placed, etc., she was much less irritable, but I remember that first year as mostly a terrifying experience. Bonding? Gosh, that was the last thing we were concerned about. Keeping them both alive and healthy was more a priority with bonding happening somewhere in the midst of all that.

C & V said...

To take a slightly different approach:

In many things that relate to relationships, WHAT ONE FEELS and what one DOES may seem disconnected--but I believe these two aspects are connected.

Does Bonding mean you FEEL warm-fuzzy feelings toward your child?
Emphasis on FEEL . . . ?

Or does Bonding mean force-of-will, how hard you tried (to keep your babies inside or be present to them at their bedside even though they were just sleeping and you were not interacting very much at all); how much you worked to provide breast milk; how many minutes/hours & miles you logged in the car driving back and forth to visit.

Is bonding caluculated (or related at all) to tears shed? If you gave up your job, is that a testimonial to bonding, to your committment to your child?

Come on, people! Everyone who wrote a moving description--even those who wrote out of feelings of guilt--has a committment to their child. You are DOING for your child, not just FEELing good.

For me, grieving for what might have been is also a bonding experience--I know it is. Why would I be so affected by chronic grieving if I didn't long for the best for my Vic? (Bill and I recently got married for Vic's sake, so that he would have 2 legal parents to make decisions into the future, and provide Vic more safety-net capital. We got married out of a sense of commitment to Vic--we could have lived together forever without a legal marriage document--after all, we are old hippies, and living-in-sin is fine with us.)

I believe that we are more bonded/committed than we may realize. This process evolves over time; and it comes in bits and pieces; and it is tested from time to time, so that we may DO things that surprise us, in order to protect or advocate for our kids.

Go ahead: name all the advocacy and protective things you did/are doing for your kiddo. The list will be long and heroic!

The feelings are less reliable; the doing, the actions, speak volumes.

Chris and Vic

terri w/2 said...

Wonderful point, Chris!

Anonymous said...

I hope it's ok to comment even though I am not a parent of a preemie. My best friend is the mother of micropreemie twin boys, now age 3, so I am deeply interested in the whole preemie world, in order to bond better with her and understand her world. I know I can never come close to knowing, but I think the fact that I'm trying to know might help. Anyway, I digress. My point being to I think Chris, is not whether the bonding is a process over time, which you're right, it certainly is, but whether one got to to have the touchy feely bonding warm fuzzies at NICU right? Please don't flame me people, am just trying to understand here. I know how very sensitive this topic can be. Even the most innocent of comments and statements I've learned the hard way, can be taken wrong, when confronted with grief and loss, two very key emotions, my friend experienced(es).

future of hope said...

I'm not sure that "bonding" ,in the traditional sense of the word, is a good descriptor for what occured during my son's NICU experience. But my maternal instincts sure kicked in full force. I still felt an almost physical connection with the little alien looking guy (2 lb, 26 weeker). I had a five year old at home (plus 4 additional daytime kidlets - my contribution to household income), a husband that worked full-time, and one car. We lived an hour away from the hospital. I would leave home around 6:00 pm every evening, and stay at the NICU until about Midnight. Saturdays I was able to go all day, and Sundays not at all, that day was spent one-on-one with my oldest. I was exhausted and stressed beyond measure, something I am sure that everyone here can relate to. But the peace and connection that I felt sitting beside the isolette, resting my hand on his tiny diapered rump ( he loved the light pressure, but he could not handle being stroked to patted) and staring into his little blue eyes, as he sucked on his wee thumbie and stared back at me, was a stronger "bond" than I had even felt after the birth of my full-term first born. Was it warm and fuzzy? Not really, too many conflicting emotions. But it was Oh, so powerful.

terri w/2 said...

Our first twin was not expected to make it after having a grade IV IVH and repeated cardiac probs due to kidney failure - we did a DNR on her at that point. I think this is certainly not conducive to "bonding" - you really are preparing yourself to let go instead. Then when she did start to pee and cardiac issues reversed, and it was determined she would make it, it was bittersweet -yes, we did want her to live, but what kind of horrible existence was she in for? The whole bonding thing with her was so much more difficult than with her twin.

To simply say go to the NICU and stroke them 3 times per day - yikes.

23wktwins'mommy said...

We were very blessed to live only 5-8 minutes away from our NICU. There were no rules about leaving during rounds or shift change...in fact I only missed rounds about 5 times in our 122 day NICU stay. This helped me bond with my twins when they were too critical to kangaroo. The fact that their lives were so fragile and they were so close to death made me very protective and connected to them in spite of our lack of physical contact. I knew the only things I could do for them were to pump to provide them with breast milk, visit with them, and involve myself and understand what was going on with their care. We had to be very involved because our son especially was so critical that we had to make some difficult decisions about his care.
I remember on one occasion, I realized I had been sitting at my daughter's bedside longer than my son's that day...I felt immense guilt...I questioned whether or not I was distancing myself in preparation for his expected death. While my daughter was making progress and finally opening her eyes (they were fused shut for 3 1/2 weeks), my son was so critical if you even moved his blanket from over his eyes he would desat. That was difficult, but I wanted him comfortable so I chose not to push the issue of even taking his blanket off to look at him, and simply sat by his bedside quietly begging "God" not take him from me. If anything, I was more connected knowing I might not have him with me much longer.
I can honestly say I bonded before our first kangaroo hold which took 3 weeks for my daughter and a month for my son.
Throughout our NICU stay I did EVERYTHING I was allowed to do...changed diapers, took their temp, held their feeds when they were fed by the NG tube, held them quietly, dressed them, and when able to, breastfed them. When they were too sick, I would simply silent read books from the resource library by their bedside...educating myself as much as possible on what to expect next in this crazy NICU ride. We took A LOT of pictures and I came home and journaled and uploaded pictures to share with family and friends who were praying daily for them. This also helped me bond because I was actively sharing my experience with my children with others. I was proud of them every step of the way, and humbled by the many people who were keeping them in their thoughts and prayers.
When we came home the bonding kicked into overdrive. I was so thankful for their lives and relished in every moment with them. Let me say that we were very lucky with respect to the twin's disposition. Both LOVED to be held, cuddled, and snuggled with blankies. They were not fussy...my son was a bit needy and more than anything...he loves to be held. I can honestly say I was never frustrated with crying, because they were so easy to soothe. We are very lucky, as I have read many parents of extremely premature babies like mine do not enjoy this type of physical contact.
Every time I remembered back to how close we were to losing our children, I would look at their gorgeous faces and fall deeper and deeper in love. Every time they cried and were instantly calmed by being held by me cemented our bond.
Another reason I think the bonding came easier was because the twins were, and still are, great sleepers and good eaters. This took a lot of stress off of us. We got a good nights sleep and were refreshed enough to enjoy them during the day.
It didn't take long before it was clear that the twins preferred their father and I above all other people. Especially now, at one year actual and 9 months adjusted age, they are showing signs of stranger anxiety, and will not smile at strangers like they do with us, and reach out their arms toward us if someone they don't know holds them. This honestly melts my heart because I wondered if they would ever prefer us because of our 4 month separation following their 17 weeks too soon birth.
The smiles, laughter, and reaching for us to hold them makes me sooo happy. Our son has just started saying "dadada daddadeeee," (for those of you who read my blog I uploaded video of it...see, still sooo proud!) and it is an amazing feeling, even though we know he doesn't know he is calling his dad's name yet. They mimic noises we make and want to interact and play with us. They want to fall asleep in our arms, and if they are fussy in their cribs, they will immediately fall asleep if brought into our bed with us. This reciprocal love/need is what continues to strengthen the bond every day.
I don't know what it would feel like to give birth to a healthy baby and immediately hold him/her after birth and breastfed within hours. It brings tears to my eyes just typing about it. The bond must be so different and special. I hope I can experience that one day. But what makes my experience with Serena and Edwin different and special is that I now know just how fragile life is, and I know what it feels like to almost lose my children. I will always be overly-protective of them and always feel a special connection knowing that their survival was a miracle.

Anonymous said...

Chris asks what "bonding" means to us. For me, bonding is developing a close parent-child relationship, and that means a quantity of quality time. Just because we were forced to love our babies from 100 miles away, make decisions regarding their care, and rarely get to see them while they were in the NICU doesn't mean we "bonded" into a close parent-child relationship. Babies normally start learning to trust their parents almost from birth. The mother is there to cuddle and feed her child, respond to his cries, hold him, walk him, figure out what is bothering him. None of this was really possible for us while they were in the NICU...weeks for one and months for the other. One son had so many medical procedures that when we did touch or hold him, his heart rate dropped. I'm convinced he was afraid another painful procedure was coming. Even after he came home, it took a while for him to trust us and finally begin cooing as we rocked. Our oldest lost some of his trust in us when we had to be away for so long and leave him with family that he didn't know very well, but I am so thankful they came through for us and eventually brought him to the hospital to see us. I have a video of his reaction when he saw us. His little voice broke into "Mama, Mama, Mama," and his arms stretched wide as he cried. He did not let me go for a long, long time, then he did his daddy the same way, burying his head as closely as he could into his neck. I know without a doubt he thought that we had just abandoned him. He was too young to understand what was happening but old enough to miss us terribly, and I still cry when I watch it and still feel guilty for having to leave him on the spur of the moment although I know circumstances were beyond our control.
Bonding was also difficult for our healthier twin, because he did not need all the stimulation that was part of our household. We had a 2 year old! He bonded best with my mother-in-law while we were gone for surgeries that his twin needed. It was quiet at her house. He was the center of her attention, and he loved just sitting in her lap for hours. Every time we returned to take him home, he would cry, even as a little baby. So yes, my heart broke for him!
Despite such a rough start, we eventually did bond well, and now I am having to go through "Empty Nest" Syndrome. It is much harder for me than it is them!

Kathy said...

@anonymous:

"Even the most innocent of comments and statements I've learned the hard way, can be taken wrong, when confronted with grief and loss, two very key emotions, my friend experienced(es)."

I think that by just understanding that you can never really understand, that even innocently intentioned statements can come out the wrong way, and that you need to be sensitive to how what you're saying will sound to your friend, you're most of the way there. Brava for trying to educate yourself about prematurity, it sounds like you're a caring friend.

Others might have different experiences, but for me, the cruelest things people said were, I think, done out of just not THINKING about how it would sound to me, or out of total ignorance about how difficult prematurity is, even for the healthy ones.

Just never tell her how lucky she is to avoid stretch marks, or that she's worrying too much because you know from TV that her kids will be 100% fine by the age of 2, if not sooner, and you'll be way ahead of a lot of our friends and families!

abby said...

I bonded to the extent that I could with our girls when they were in the NICU. We were fortunate enough to live five minutes from the hospital and spent as much time as we could by the girls' isolettes. At first that amounted to about 12 hours a day. As their situation declined due to infection and needing PDA ligations, that was ramped up to 20 hours a day, and sometimes even 22. We bonded by holding their fragile hands--or more correctly, allowing them to hold our fingers--and reading to them, singing their favorite in utero songs to them---and finally just sitting quietly with them. The urgency for bonding grew daily, as their oxygen needs increased and their situations declined. My biggest moment of bonding with Olivia came two days before we lost her, when I wrote a poem for her--in honor of her, but also in impending memory to her. We never did get to hold her before we decided that enough was enough; and then, holding her was not about bonding with her but giving ourselves permission to let her go.

It was after that that bonding with Hallie, our surviving twin, took on a new urgency. We sat vigil by her isolette for three and a half months after that, virtually without any relief or time to do anything else. We could not lose her. That was how I felt.

I would not hold her, even when offered this, because I did not want to be responsible, ever, for anything bad happening to her. Sharon, Hallie's biological mom, did hold her but I couldn't until she was off the vent (8 weeks after we lost Olivia).

Even then, bonding with Hallie, for me, has been about the smiles, the giggles, the constant reading of books, the trips around town, and the wonderful toddler things we do. Feeding Hallie is not about bonding with Hallie at all, alas (it is very stressful to feed her), but everything else we do together is. And the more I get to know her, as her personality emerges, the more we bond. I hope this is always the case.

Laura said...

i was very challenged with the whole rospect of bonding with my preemie.
my son, a 24 weeker, was adopted by my hunsband and myself. although i had nearly daily contact with him as an RN in the nicu where he was a atient, i was not supposed to have contact with him because of the complicated social issues related to his biological parents walking away from him because he was damaged. he was in state protective custody and was to have no contact other than medical interventions according to the ethics committee of our hospital because the bios were suing the perinatal group because their IVF baby was not "perfect"
anyhoo....
at age 2 mos we were named his foster adoptive parents and granted the right to visit him and "bond".
daily one of us would kc with him for 2-3 hours. some days we couldn't because he was still unstable on a ventilator until he was nearly 3 months of age. on those days we nested him with our hands and would either sing quietly or read one of our kids' favorite bedtime stories. my 4 kids visited once daily and ould read o him as well.
i know some parents say that can't bond with their baby doing these things but i felt an instant connection. when i knew we were truly connected was the time he needed an iv start for yet another blood transfusion and he kept decompensating and needing extra oxygen and interventions. finally his nurse suggested i kangaroo him leaving the limb exposed where she wanted to attempt the iv start. he fell asleep in my arms and did not flinch, desat or brady as she got the iv in. the nurse looked up at me and smiled telling me it is clear i am his mama and he knows where he belongs....safe in my arms.
we continued the kangarooing long after discharge home which i found very healing for both of us (mom and baby).
his nicu followup visits and evals by pt, ot and school sychologists have reinforced for e that although he is not my child physically we are as tightly bonded ogether as his sisters are whom i gave birth to.
of course everyone's experience is different. this is mine.

23wktwins'mommy said...

I just wanted to say I am greatly touched by Laura's experience. When we live in a world where some biological parents do not want a child that is not "perfect" it moving to know there are loving people who are willing to reach out and raise these children as their own.
I knew that my step-father's brother and his wife had adopted their two children from Guatemala. Their son is 10 and daughter is 7 or 8. What I didn't know was that their son is a former 23 weeker...an abortion "gone wrong." Even without American neonatal intervention he survived, and today has mild CP, the casual onlooker wouldn't know, was wearing thick glasses, but recently got contacts, and perhaps could be deemed a little socially awkward. He is in a mainstream classroom and is very intelligent. My point is not to try and say all 23 weekers turn out fine and we should resuscitate all of them. My point is, here is a child who was unwanted and left to die. He didn't, and thankfully was adopted by a loving supportive family who knew full well the challenges he would likely face.
Cases like these move me. (Their daughter was a victim of shaken baby syndrome.)

Chris and Vic said...

I was Vic's nurse in the NICU before I was his treatment foster-mom, and now, his adoptive mom.

I took him home to die, and thought I would still be more professional than motherly towards him. I called him "Mr. Baby" at home for a while. My kids stood in the doorway of his room, and talked to me from there--keeping their distance from him, literally and figuratively.

On Day 5 at my home, Vic's 2nd shunt, which hadn't worked to decompress his ventricles (nor had the first shunt worked), began working on its own, for no reason that anyone can explain. I think it was on that day that I started to feel the she-bear feelings (protectivenss, advocacy, etc.).

It was I who decided to cut off hospice care after a month--with the feeling creeping up on me that not only was Vic NOT going to die, but that I would have him longer than originally expected.

I went to all the court hearings, and when I saw that Vic's biological mom wasn't coming to the hearings, that is, wasn't doing the things required of her in order to get him back, I started to think I'd have him longer.

Going to all his therapies and rooting for him to master the developmental tasks, as I did, inched me along towards more solid bonding, too. There were few mothers who came to all their kids' therapies.

Detecting his shunt malfunctions and going to the hospital with him for his 6 additional shunt surgeries in that first year, made me his advocate she-bear in a big way. I never left his bedside. I even lied to get the docs and nurses to come and see that he wasn't recovering very well from his surgeries--and sure enough, he needed another shunt revision within 24 hours, each of those times--two shunt revisions per weekend, for several weekends in March/April.

I jeopardized my job, missing several weekends at work, to stay with him.)I work the weekend program.)

I talked to his birth mom, who was contacted to give permission for each of the 6 surgeries, and offered very tentatively at first, to "keep him forever, if that is what you decide".

I had arbitrarily set the 1-year mark in my mind--that is, if I kept him for a year, he would feel like he was my own child.

In the process of adoption, it came to light that Vic has Cherokee ancestry. It took months to straighten that out---to see if he was registered on the rosters of any of the 3 reservations. I contemplated running away with him to Canada during that time . . . rather than turn him over. I guess by then, I was waaaaay bonded . . .

And the rest, as they say, is history. Like many things, bonding was/is a day-at-a-time thing.

Chris and Vic

Helen Harrison said...

To Laura sho wrote"he was in state protective custody and was to have no contact other than medical interventions according to the ethics committee of our hospital because the bios were suing the perinatal group because their IVF baby was not "perfect"...
****

Did the perinatal group give the parents a choice about resuscitation at 24 weeks? Many hospitals would do this, and honor the parents' wishes. I'm wondering if the OB resuscitated this baby against the parents' wishes.

Do you know the basis of parents' lawsuit (not being "perfect" is not enough) and has the suit been resolved yet?

Helen Harrison said...

To 23wktwins'mommy:

What kind of neonatal care did this "23- weeker" get in Guatemala?

Was he on a ventilator?

Survival at 23 weeks without major neonatal intervention is, as far as I know, undocumented. It would be very interesting if you could share the details here.

23wktwins'mommy said...

I don't know the details. All I know is that he was not suppose to be resuscitated. He was "aborted" but somehow still alive, and then something was done. Mind you this was over 10 years ago and outside of the US. Of course he had some neonatal care, but who knows how quickly he was intubated after birth? How long did they allow him to live considering he was suppose to have been aborted by his mother? Was there such thing as an oscillator? Did they do laser surgery for ROP? etc etc. I really have no idea and don't have a relationship where I would ask these questions. They may or may not have his hospitalization records...I just don't know. All I know is they were told he was born at 23 weeks gestation when they adopted him.

helen harrison said...

To 23wkstwins'mommy:

As I understand it, abortion is *highly* illegal in Guatemala, but very common since birth control is also not allowed. Abortion results in the death of thousands of Guatemalan mothers each year, and is usually performed on desperate poor women by Indian abortionists/midwives out in the country, not in hospitals.

If discovered, any "gestational age" that might be given would probably be skewed to the very low side (to prevent/mitigate murder charges?) and hugely open to question.

Also, not everyone around the world uses the same estimation of gestational age that OBs and Neos in the US do: dating not from conception, but from the first day of the mother's last menstrual period. Again, you have to wonder how anyone got such precise information on a child in this situation.