Reconciling my "crunchy" wishes with the fact that I have a 29-week preemie

[Georgia_Julia]

My husband and I have been trying for years for a baby, and after six miscarriages, we were so happy to have a pregnancy that was finally going normally. That is, until I was admitted to the hospital with severe pre-eclampsia at 27+5 weeks.

I had a birth plan written out by week 14. I wanted a natural drug-free delivery; I wanted to do delayed clamping and to have baby placed on me immediately after birth so he could breastfeed; I wanted no hep B or vitamin K shots; etc. etc. etc. etc.

Enter pre-eclampsia. Hospital bed rest only got me to 29+1 weeks before baby was showing signs of distress from my continued blood pressure spikes, and I was told that I needed an emergency c-section.

I felt like I was in a nightmare. I bawled my eyes out as I got prepped for surgery. I just wasn't ready for my baby to come that early, and certainly not in such a traumatic way. I told my OB I would ONLY consent to a c-section if she would do delayed clamping. She hesitated and said that if the baby had to be intubated she couldn't do that. "But," she said, "he could come out screaming, so you never know." I begged her to do it if she was able.

My baby did come out screaming, but my OB still clamped immediately. :( I was so upset because my baby needed every milliliter of his blood, and she cut it off from him!! Later she justified it and said at that age, the cord is teeny-tiny. I thought, WHO CARES??? I asked you to delay clamping and you did exactly the opposite!!!

I didn't get to hold my baby... they held his head next to mine for three seconds for a photo, and this was after washing him and letting him cry for what seemed to be an eternity. Then he was whisked off to the NICU and I wasn't allowed to see him for over 30 hours.

The entire experience has been so traumatic on me knowing how traumatic it's been on him. I feel like I've had to give up on everything I wanted for my son to give him the best start in life. We even agreed to the vitamin K shot (after confirming it was thimerosal-free and finding out they won't do oral vit K) since he's so premature and I knew I wouldn't be able to breastfeed immediately, and the idea of brain bleeds etc. scared the daylights out of me. Even little things, I've had to give up on... e.g. they have been giving him a pacifier in the NICU without my permission. 

I know some hard decisions will be coming up. The doctors will push us to give all the usual vaccinations. We had been adamant that we would NOT vaccinate at all, and yet preemies have risks that full-term babies don't have, so all the preemie moms I know are making it sound like I'm planning to murder my baby if I don't allow all the recommended vaccines.

Those of you who are more natural/crunchy/AP types like we are, how did you reconcile all that with the fact that you have a preemie? Did you agree to some of the vaccines or not? How on earth did you decide? Do you feel your baby is harmed for life because you weren't able to give him the healthy start you wanted for him/her?

[MadelinesMama]

I have a 27 week preemie and things have been much different with him than with my daughter.  I'm EP'ing instead of Bf'ing since getting him to latch has been a nightmare.  We don't co-sleep.. I guess he got used to sleeping alone in the NICU and now he sleeps better that way.  My daughter isn't vaccinated, but our son is fully up to date on shots.  My daughter didn't use a pacifier, but I offered it frequently to my son.  I was told by his speech therapist that it would help him with his suck skill and make it easier when it came time to start offering oral feeds.  Honestly.. I'm just thrilled to have him home with us and mostly healthy.  I don't feel as if we are nearly as connected as I was with my daughter, but he was in the NICU for 3 months.  How can you really compare that to my daughter who was in my arms or next to me in bed for probably 22 hours of the day?  I'm sad for what I know the beginning of his life could have and should have been.  Preemies force you to change your plans. 

[Georgia_Julia]

Wow... you're right, preemies definitely force you to change your plans. I have come to terms with things like the NICU using pacifiers, him getting my milk through his tube for now, etc. But the idea of changing our plans as far as vaccination terrifies me a bit. I don't know if I can compromise on that one when I think of how tiny their bodies are to get all those toxins.

Would it be reckless of us to not vaccinate but basically quarantine him for the first year of his life?? (We won't do daycare, or even the church nursery, and we plan to have family who visit essentially scrub in before they can see him, no airports or other crowded places, etc.) Are there any specific vaccines that a preemie should absolutely get because not doing so would risk their lives?

[twinpossible]

My twins were born at 29 weeks from a twin-to-twin transfer. Sorry momma, I know the trama and it is NOT easy. I still have PTSD from all that happened. I am a super crunchy mom too and I have made some compromises but I did NOT compromise on vaccines. My doctor suggested a delayed schedule because they were so premature, he did not want to overload their systems. That gave me time to research the effects of vaccines on preemies and from there I decided not to vax at all. My doctpr fully supported my choice. It is a hard choice to make, what to give in on and what to hold to your guns. After tons of research I found that all vaccines would put my tiny babies at risk. They already reacted poorly to certain medications during our 11 week NICU stay so I was hesitant to do anything else to them. I highly recommend Dr. Sear's Vaccine Book, he has a chapter on preemies as well at Sancity of Human Blood. I also talked a lot to the mamas on the vaccine forum here and they directed me to tons of medical articles and journals. To answer your questions, I do venture out into public but carefully. I do not allow strangers to touch them, I put them in carriers to keep them close to me and I avoid baby play groups that choose to vax because some vaccines shed live cells. We do not do daycare but I do have a nanny come to our home to give me a break every once in a while, I do have twins after all! If you are interested I can pass along some of the articles that other mamas passed to me or you can check out my thread in the vaccine forum called, "Tell Me Why" http://www.mothering.com/community/t/1341211/tell-me-why.

Vax were super important to me but other issues like a paci I just plain gave up! We also had feeding tubes, it is possible to breastfeed later but you need a great lactation consultant a tons of patience!

[Georgia_Julia]

Oh, twinpossible, what you posted is exactly what I needed to hear!! I'm so glad to hear it's not completely outrageous to refuse vax for a preemie (especially when you're super-cautious about what/who they're exposed to). I definitely am interested in any articles on this topic and will check out the info in the thread you linked as well as the Dr. Sears book.

THANK YOU THANK YOU!!!!!!! For the first time since our son was born, I'm feeling so much more hope now (of course, that is partly due to the fact that my feisty son had such a great day today and has still had zero major setbacks... just minor ones like a bit of reflux when taking too much of my breast milk in his tube). It would've killed me to sit by while my son's tiny body was injected with who-knows-what. Thank you again for sharing your perspective!

[Georgia_Julia]

One question: in the thread you linked, you said, "they gave them a few vax while we were there saying it was required for stay in the NICU"... do you remember which vaccines those were? They "allowed" us to opt out of hep B and the eye drops, but we ended up agreeing to vitamin K after they assured us it was thimerosal-free, only because I knew it would be weeks before he would be getting substantial amounts of my breast milk, and I was concerned about things like brain bleeds. Are there other vax I need to be concerned that they may be giving him behind my back? I had asked them not to give a blood transfusion or x-ray without our permission, but I didn't think they'd try to give vaccines so early without our consent!

[AmyJeanneBee]

I had a micropreemie at 24.5 weeks. We were in the NICU for 110 days. It was hell. So much compromising. My son did have a brain hemmorhage BUT it resolved on its own. He had an open PDA and it resolved on it's own. He had ROP issues and they resolved on their own. He was on the ventilator for hours after birth before being put on CPAP. I pumped 8x a day to give him breast milk to which they added fortifier. I also did energy work (something like Reiki) on him every day. I sang to him every day. Either my husband and/or I did kangaroo car on him every day. I believe because of these things he thrived and continues to do so. Never doubt that babies are resilient, as is your spirit. While this birth experience and the NICU experience is something I would never wish for it has been the ultimate growth experience. Before he came I hoped that my spiritual guru would find me...I envisioned a Buddhist monk or a Zen book I could refer to. Never did I envision a 1lb 12 oz baby would be it.

I am also a "crunchy"mama. I wanted the whole natural birth with daddy catching and delayed cord cutting, placenta encapsulation...etc. All of it when out the door when I went into labor. Now I am grateful for Western Medicine. It has its place. Western medicine is great for emergency situations.

My son is home now. He is 9lbs. On the lowest amount of oxygen he can be on before nothing. We are still practicing breast feeding. We're doing cloth diapers and babywearing daily.

I have learned that you have to live day to day to get through the NICU. You have to let go of your expectations as THAT is what hurts. The '"should have beens"is what hurts the worse. It should have been different, he should still be inside me, he shouldn't be going through this, I should be able to do X- THAT is what hurts. When you stop and breathe and just hold your child's hand and admire is skin, his lungs...you'll find peace. It is so much easier said than done but worth the effort. I send you love and strength. NICU Moms are Warrior Moms to the 100th degree. You will get through this.

Some things that helped me- inspirational music such as A Perfect Circle's song Gravity, Bob Marley's 3 little birds, Adele's Make you Feel my Love and many others, 2 poems (see below) and http://users.erols.com/jmatts/welcome%20to%20holland.html . The Holland poem, i think will help you where you're at right now. This book too- http://www.amazon.com/Preemie-Parents-Tami-C-Gaines/dp/1416206302/ref=sr_1_1?ie=UTF8&qid=1330451077&sr=8-1. It is a short read that is great for crunch mamas like us.

I highly recommend preemies get the RSV shot (Synagis). It is not really a vaccine but an immune booster to prevent a fatal cold. The rest are up to you and your family. The NICU needs your approval to give vaccinations I believe and most procedures too.

Also, trust that you made the best decision you could with the information you had at the time. Remind yourself of this with everything. I know I am always struggling with 2nd guessing myself.

Feel free to msg me if you have questions or need some advice. I don't know you but know your pain. I'm sending you good vibes for strength, love and good health!

One Day at a Time

There are two days in every week about which we should not worry;

two days should be kept free from fear and apprehension.

One of these days is yesterday, with its mistakes and cares,

its faults and blunders, its aches and pains.

Yesterday has passed forever beyond our control.

All the money in the world cannot bring back yesterday.

We cannot undo a single act we performed;

we cannot erase a single word said.

Yesterday is gone!

The other day we should not worry about is tomorrow.

With its possible burdens, its large promise and poor performance. Tomorrow is also beyond our immediate control.

Tomorrow's sun will rise, whether in splendor or

behind a mask of clouds... but it will rise.

Until it does, we have no stake in tomorrow, for it is yet unborn.

This leaves only one day... today!

Any man can fight the battle of just one day.

It is only when you and I have the burdens of those two awful eternities - yesterday and tomorrow - that we break down.

It is not the experience of today that drives men mad.

It is the remorse of bitterness for something which happened yesterday, and the dread of what tomorrow may bring.

Let us therefore live but one day at a time-today.

- Author unknown

[maryeliz]

I was in a similar situation-hospital at 27w due to pre-e, delivery at 29w.  The NICU is so hard, and there isn't much anyone can say to make it better.  I would suggest a few things

1) Kangaroo whenever possible, and let everyone know that is what you want to do.

2) Find out how you can directly communicate with the doctors.  Our NICU let us sit in on rounds for our daughter.  It can be really helpful to talk directly to the doctors, find out why they are doing what they are doing, and raise any concerns that you have.  If you want something/don't want something for your baby, make sure you talk to the doctors about it and not just the nurses.  If the doctor agrees to something that is unusual for the NICU (for example more frequent breastfeeding, when you get to that point) as to have it written in your baby's chart so everyone will know.  In my experience, the trend in NICUs, particularly for stable babies, is to try to use as few interventions as possible.  This actually put us in the weird situation in the NICU where we wanted the doctors to use interventions and the doctors wanted to wait and see (for example, we knew our daughter needed another blood transfusion, but the docs wanted to wait-we were right, and we wanted her to get reflux meds, but they wanted to wait-we were right).

3) My daughter is 15m now-obviously we can't know what the future holds for her-but I would never use the word damaged to describe her.  She is happy and silly and loves to mimic and play pretend.  She is tiny and generally a total charmer.  Remember that when you get your baby home from the NICU, you have a newborn.  Basically in my mind, we just started the clock over when we got her home, she wanted to be held and we held her all the time and just let her tell us what she needed.  She is just a total joy, to the point that, although for her sake I wish she had an easier start, I can't imagine her story being any different than what it is.

4) The vaccine issue isn't one I can really comment on except to say that any decent hospital will get your written consent before giving your baby any shots (they don't want to get sued).  It sounds like you had your baby not that long ago?  If that is true, you still have some time to decide what you will do, since they don't even start talking shots until 2m.  In the interium, could you find a ped with privilges at your hospital who is sympathetic to no-vax?  If you can, it would make your life a lot easier, because the ped can run interference with the NICU.  

[mama2soren]

I don't have much time, but I wanted to reply.

My first born was a 31 weeker.  It was tough giving up many things that were important to me (natural delivery, immediate skin-to-skin and nursing, having him home with me right away, etc).  I still feel a bit wistful when I think of how tough his first weeks must have been on him, too.  But, I reconciled it by thinking this: I wanted to be super "crunchy" from the beginning with my son because I believed that that style of parenting would give my baby the best, healthiest start in life.  However, being born early meant that his best start (and possibly only chance to survive and thrive) was in the NICU getting medical care.  Even though it was far different than I hoped and planned, it WAS the best start for him.  It WAS the healthiest option for him.

He is almost 4 now.  He is energetic, creative, smart (so, so smart!), happy, and very securely attached to my husband and me.  I spent long, discouraging weeks of pumping exclusively, then using a nipple shield, then doing combos of EBM with HMF and time at the breast, before he FINALLY nursed directly at the breast exclusively.  But, he ended up nursing until just before his third birthday.  He would have gone longer, I think, but I chose to wean him since it was so uncomfortable due to my new pregnancy.  He was isolated from me in the NICU, but when he came home he lived in the wraps and sling and snuggled close to us in our bed at night for years.

There was no way for me to "get back" some of the things that were important.  I had a C/S.  His cord was clamped.  He needed vitamin K (in my opinion.)  But, the things that were most important and most long lasting (baby wearing and nursing) we were able to do after all... just later than we hoped.  And it turned out ok.  Actually, it turned out great.

We have not given our son any vaccinations.  I didn't see any reason that preemies should be more inclined than full term babies to get vaccinated.  In fact, I was even more uncomfortable with vaccinating a preemie, because he would be getting shots intended for big, healthy 16 pound 4-month olds when he was just a tiny 10 pound 4 month old.  He did have Synagis (which is NOT a vaccine!) during his first fall season, and we are still grateful for that.  I highly recommend that you research that and fight for your insurance to cover it (the series of shots costs thousands.)  I don't know if I would have felt differently about some vaccinations if I hadn't been able to exclusively breastfeed him or if he needed to be in daycare at a young age.  I probably would have been more concerned about rotovirus and pertussis in that situation...

Oh , and a note on pacifiers: It can actually be a benefit to use a pacifier in a preemie who will be breastfed.  They associate the sucking with a full belly, as they suck while being gavage fed.  Nipple confusion worries are valid, of course, but it is also likely that your baby will be fed your milk from a bottle before he is able to latch and nurse exclusively at the breast.  It would likely be worse to have him get used to feeling full without the sucking.  Hang in there.  My son did love his Soothie, but he gave it up on his own around 9-10 months.  That was that.

[mama2soren]

Originally Posted by maryeliz 

4) The vaccine issue isn't one I can really comment on except to say that any decent hospital will get your written consent before giving your baby any shots (they don't want to get sued).  

This is not foolproof, unfortunately.  I had someone tell me in our NICU that parents gave their implied consent for Hep B after signing some paper saying they received and read the NICU parent handbook they gave us, which talked about Hep B.  I made sure to tell every nurse, doctor, and resident that we did not want Hep B (or a circumcision... can't be too careful, especially around here where the majority of babies- even tiny preemies- are still circ'd ).  I would recommend making a little crib card to put on his isolette stating: "Baby's Name: No Hep B vaccine.  No circumcision." Yeah, they might think you're over-bearing about it, but who cares!

[AnnieA]

It's a tough road to travel on to be sure. Big hugs first of all. My DD wasn't preemie but she was born with an undiagnosed heart defect and had to be immediately transferred across town to the NICU. I didn't get to see her for two days. She had her first open heart surgery at 8 days old. She wasn't allowed to eat before she had her surgery (TPN only) so by the time the surgery was done and I was able to hold her again (a few days after surgery), we struggled with establishing a nursing relationship. Between the delay and some oral issues from being intubated multiple times, she has never latched. I exclusively pump. It sucks but it was more important for me to give her breastmilk than to be concerned about how she received it.

WRT vaccines, that was a tough one for me. I had intended to selectively delay vax. But with her heart condition, it was imperative she not get sick with some things. Rotavirus for instance. If she got a stomach bug like that, and got dehydrated, her BT shunt could clot up and she would die. Simple as that. So she got two doses of that before she had her repair surgery. Synagis for RSV. Not a vaccine but we had to protect her from as many respiratory illnesses as possible. I hated giving it to her. She reacted poorly to it. But the consequences of getting RSV were too great.

Bottom line is you do the best with the hand you're dealt. Research as much as you can so you feel comfortable in the decisions that you make for your baby. And at the end of the day, love and snuggle that sweet little one as much as possible! You've fought so hard to get him here!

[LunaLady]

Hello, I don't have much time and I haven't read all the replies - but I just wanted to give you my story!

My boy was born at 33 weeks after PROM at 31 weeks and my having PE. He was born vaginally and we had a 25 day NICU stay. He was almost exclusively bottle fed in the NICU, but at 11 weeks he spontaniously latched and we've been breastfeeding every since.

We co-sleep, baby wear, EC, breastfeed, cloth diaper, etc - everything I said I wanted to do! His birth and the first part of his life were very traumatic for all of us, but I've been able to recover a lot of what I thought I'd lost! 

It can be done. If you want something bad enough, you'll get it :) I am stubborn to a fault, and in this case it helped me a lot.

[aikigypsy]

Just a note on pacifiers -- my little guy used one from being in the nicu, but not as much after he got home. When he was about 5.5 months home, he got a really bad cold/fluey/sick and didn't want to suck on anything. Forgot to re-introduce the pacifier and he's been without it ever since. As long as YOU (or other caregivers) don't push it once he's home, chances are he'll be fine. Nipple confusion was never an issue for us.

[madeitX2]

Oh Georgia hugs!,, it is to much to type now as I just went thru this for 5 wks and signed off on all vac even Vit K for my 31 wker. You are present loving him and breast milk for preemies is very powerful don't add the anything to your milk if you can and your baby will be strong. I am not vac'ing my boy at all! There are many other ways for health as u know. We sound so much alike and this was my first hospital experience as well and stayed strong even with CPS called on us!

[mom2tig99Nroo03]

i see this is an older thread, but our experiences with my 3 yr old that was preemie (the older 2 were fullterm and healthy) were NO vaccines, though it has gotten us kicked out of our pediatrician practice after 2+ yrs going there, we did do the vit k shot, and if we could have we would have done the series for rsv. he never did learn to nurse as nipple confusion was a very real problem for us, and i ended up expressing for 38 months before i just couldn't get milk out anymore, we still cosleep and i wore him until it was just too painful for my back. (i wore my oldest through my pregnancy with my dd and wore her until she was 3ish and preferred to walk while holding daddy's hand instead...) i did manage to avoid epidural/pain meds etc with my induction out of sheer stubbornness.   my suggestion is to pick your battles and figure out which issues you feel strongest about to give the best outcome possible, and go from there.