Nošenje bebe s refluksom

O ovoj temi postoji tek nekoliko dostupnih studija i manji broj osobnih iskustava, tako da sam o ovoj temi odlučila pričati iz kroz svoju priču o jednom iscrpljujućem razdoblju života.

Nošenje iz nužde

Nošenje je u mom slučaju bio izbor koji je prethodio mom prvom porodu. Nošenje je bilo moj informirani izbor, no vrlo brzo ono je postalo nužda.

Moj prvi sin je u svoj prvih šest mjeseci spavao samo prva dva tjedna, i to zbog žutice. Kada se ona povukla onda je krenuo pakao na koji uopće nisam bila spremna. Stalno je vrištao.

Jedini mir kojeg smo oboje imali bio je isključivo zbog nošenja. Čim bih ga spustila u vodoravni položaj mlijeko i kiselina izlijevali bi se iz njega kao iz šalice. U slingu sam nosila i svoju glavu i njega. Prvih šest mjeseci živjeli smo u slingu.

Preživljavanje

Nošenje nam je prvih mjeseci bilo stvarno iz nužde. Nisam na umu imala praktičnost nošenja, slobodne ruke i prekrasnu vještinu koja mi je trebala omogućiti privikavanje na ulogu majke i povezivanje s bebom. Htjela sam samo da sve čim prije prođe. Dobivao je na težini usprkos toliko povraćanja, s mlazovima i po dva metra u dalj, zahvaljujući vrlo čestim i prekidanim podojima. Nije smio imati pun želučić jer bi mu želudac sve istisnuo van kroz otvoreni sfinkter, čim bi kroz dvadesetak minuta krenuo probavljati moje mlijeko. Česti i kratki podoji  držali su pod kontrolom oštećenu sluznicu jednjaka. Bez nošenja bismo prvih šest mjeseci proveli zatvoreni u stanu, cijeli dan prikovani za krevet. Strah me i pomisliti kako bi se to odrazilo na tada već moje jako narušeno mentalno zdravlje. Ozbiljno sam razmišljala o prestanku dojenja, mada sam bila svjesna da bi zamjensko mlijeko pogoršalo refluks. Nesanica je stoljećima bila vrlo popularno sredstvo za mučenje. Naravno mene nitko nije sustavno, ciljano i namjerno mučio, no rezultat je bio isti. Osjećala sam se beznadno, samo, izolirano, osjetljivo, razdražljivo. Noću bismo se ponekad uspjeli odvojiti, i to samo ako ne bi primjetio da se odjednom našao na svom tati. U rijetkim trenucima kad bi uopće bio u svom krevetiću morao je biti na boku, sa velikim srolanim ručnikom iza leđa i između nogu, da se ne bi okrenuo na leđa i ugušio u snu. Zahvaljujući nošenju i mojoj tvrdoglavosti izbjegli smo veće probleme i pijenje blokatora kiseline, operaciju želuca i prestanak dojenja. Vjerojatno i moje dobrovoljno prijavljivanje u psihijatrijsku ustanovu, samo da se naspavam.

Na vlastitoj koži sam iskusila činjenicu da premorena beba ne spava. San doista navlači san. Ispočetka sam mu tijekom dana hvatala minutu po minutu sna. Istovremeno se, kroz nekoliko tjedana, to odrazilo i na bolje noćno spavanje. Također sam izbacila i kavu, jer je bio, za razliku od većine drugih beba, doista osjetljiv na kofein.

Između dva zla treba birati ono manje

U slingu sam ga znala nositi i preko dvanaest sati dnevno. Osobni rekord mi je bio dvadeset sati. Naravno vadila sam ga iz slinga radi promjene pelene, oboružana tetra pelenama i ručnicima jer bi tada kiselog mlijeka i sira bilo posvuda. Dojio je gotovo isključivo u slingu jer bi mi inače povraćao u grudnjak, ako bih ga netom podojenog stavljala u sling. (Mada sam stalno smrdila po kiselom siru i usprkos razvijenim strategijama). Kada je bio u slingu trudila sam se da je u istom položaju u kakvom bi bio na podu, da je mogao biti na podu bez povraćanja: u dubokom čučnju, s koljenima iznad guze, kao u Pavlikovim remenčićima. Ruke su mu bile uz tijelo i savijene u laktovima, sa šakama blizu lica. Nažalost ovaj idealni položaj tijela nisam mogla uvijek ostvariti u slingu zbog njegovog tipičnog refluksičnog izvijanja, vrlo sličnog hipertonusnom. Većinom je ipak bio u idealnom položaju. Motorički je bio ispred svoje dobi, što je i očekivano, budući da je rođen kao (pre)zrela beba u 43. tjednu.

Epizode

U pravilu bi dvadesetak minuta nakon podoja krenula “epizoda”. Vrištao je iz petnih žila, odgurivao se od mene, izvijao unazad, ravnao noge i izbijao sjedište u slingu, grebao me… Epizoda bi bila gora ako bi on pojeo (pre)više. Refluksične bebe su jednostavno sklone prejedanju. Tješe se zbog bolova i neugode, dojka im je i hrana i utjeha. Trebala sam na vrijeme zaustaviti podoj, stegnuti dobro sling i brzo hodati. (On je nerijetko tražio i više stimulacije od pukog brzog hodanja, a tek smo kasnije s radnom terapeuticom potvrdili da je  njegova senzorička nedovoljna osjetljivost dio njegove neurorazličitosti.) Puno smo boravili vani jer je stan bio premali za naše maratone. Volio je nošenje, pomagalo mu je, što sam, vjerojatno intuitivno, znala. Epizode su u slingu znale trajati po nekoliko minuta. “Na suhom”, bez slinga, sve bi povratio i bio bi neutješan sve do sljedećeg podoja, a tad bi sve krenulo ispočetka…

Strpljen-spašen!

Jedva sam dočekala da se samostalno posjedne. Na moju sreću refluks i pupčana kila su se gotovo sasvim povukli s njegovim samostalnim posjedanjem s već pet i pol mjeseci. Krutu hranu prihvatio je tek nekoliko mjeseci kasnije, i to samo onu koju je sam mogao uhvatiti šakom i prinijeti ustima. Kašastu hranu ni danas ne podnosi.

Uz ovo sve imao je i skraćeni frenulum*, koji mu u rodilištu nisu htjeli odrezati, a ja uvučene bradavice. Tada, prije četiri i pol godine, još uvijek je kružio mit da će se frenulum rastegnuti sam tijekom vremena. To mi naravno nije bilo ni od kakve pomoći jer sam htjela dojiti. Ne znam ni sama kako, ali uspjela sam. Tri i pola godine dojenja, isključivo sa šeširićima** za dojenje, usprkos svim mitovima koji okružuju i “proteze” za dojke.

Usprkos nekolicini istraživanja sve se zapravo svodi na čekanje da se sfinkter sam počne zatvarati. Nošenje je tu zapravo alat koji u uspravnom položaju omogućuje gravitaciji da čim dulje zadrži mali obrok u želucu, bebi ojača trup i pripremi ju za samostalno posjedanje.

Nažalost do sada nisam pronašla baš nikakvu studiju koja ukazuje na povezanost pupčane kile i refluksa, barem ne izvan fenomena oštećenja središnje linije. Izgleda da je to nešto što i pedijatri i roditelji empirijski znaju***. 🙂

Za one kojima bi mogli biti korisni, ostavljam linkove na kliničko istraživanje i popis simptoma GER-a. (Ima li vaša beba uz GER, još i tortikolis i distoniju, te neobično izvija vrat, za svaki slučaj provjerite ima li možda Sandiferov sindrom!)

I danas je vrlo malo korisnih savjeta za roditelje i staratelje beba s gastroezofagealnim refluksom (GER), pa nažalost uopće nije čudno što pedijatri i dalje preporučuju prestanak dojenja i ubacivanje rižinih pahuljica u zamjensko mlijeko. Borite li se sa sličnim problemom potražite pomoć svojeg pedijatra, IBCLC savjetnice za dojenje u gradskom Savjetovalištu za dojenje, dječjeg gastroenterologa i roditelja koji su imali slično iskustvo. Niste sami. 

Potražite i lokalnu grupu za nošenje, knjižnicu nosiljaka i savjetnicu.

*sinu smo tek jučer, nakon četiri i pol godine, odrezali frenulum. U izuzetno brzom zahvatu laser je skinuo prekratku resicu s korijena jezika. Uskoro sam prvi put čula svog sina da izgovara glas “r”. 

**pomagalo za dojenje. Šeširići su tanke, prozirne, silikonske opne koje se stave na bradavice. Olakšavaju dojenje i zacjeljivanje ragada.

***Postoji povezanost između manjka B12 tijekom trudnoće, skraćenih frenuluma, pupčanih kila, GER-a i sklonosti fimozama, sve većinom kod dječaka i ulaze u tzv. “oštećenja središnje linije” (eng. midline defect). 

 

Translation

Carrying  a baby with GER (reflux )

This is a story that will explain why I decided to become a carrying consultant, a story about a painful period of my life.

Wearing out of necessity

Wearing was in my case a choice that preceded my first birth. Wearing was my informed choice, but very quickly it became a necessity.

In his first six months my first son had been sleeping well only for the first two weeks, because of the jaundice. When it withdrew all hell broke loose, for which I was not ready at all. He screamed constantly.

The only peace we both had was solely because of carrying. As soon as I put him in a horizontal position, milk and acid would pour out of him, like he was a cup. I wore both my head and him in the sling. For the first six months we lived in a ring sling.

Survival

I carried my baby out of pure necessity for the first months. I did not have in mind the practicality of it, the free hands and the wonderful skill that I needed to make it possible for me to adapt to the new role of being a mother, and to connect with my baby. I just wanted for it all to be over as soon as possible. He was gaining weight in spite of so much projectile-vomiting (the two-meters-long jets flying out of him) all thanks to very frequent and interrupted brest-feedings. He should not have been allowed having a full stomach, because his stomach would push all he ate, right out, through the open sphincter, as soon as he started to digest, about twenty minutes after a feed. The frequent and short feeds controlled the damaged mucous membrane of the esophagus. Without carrying, we would spend the first six months in-prisoned in the apartment, bedded all day. I’m afraid to think how that would have affected my mental health at that time already. I was seriously thinking about stopping breastfeeding, although I was aware that substitute milk would worsen his reflux. For centuries, insomnia has been a very popular means of torture. Of course, I was not systematically and deliberately tortured, but the result was the same. I felt hopeless, lonely, isolated, sensitive, irritable. At night we would sometimes be able to separate, and only if he did not notice that he was suddenly moved on his dad’s chest. In the rare moments when he was in his crib, he had to be on his side, with a big rolled towel behind his back and between his legs, so as not to turn on his back, and not to suffocate in his sleep. Thanks to carrying and my stubbornness, we avoided drinking acid blockers, stomach surgery and quitting breastfeeding. I also probably avoided my voluntary registration in a psychiatric institution, just to get some sleep.

I experienced the fact that an unrest baby does not sleep. Sleep really draws in sleep. At the beginning I caught his sleep a minute per minute during the day. At the same time, in a few weeks, this also reflected on a better night’s sleep. I also dropped coffee, because he was, unlike most other babies, also really sensitive to caffeine.

Between the two evils one should choose the lesser

I was able to wear him in the ring sling over twelve hours a day. My personal record was twenty hours. Of course I took him out of the sling to change diapers, armed with tetra diapers and towels, because then sour, cheesy milk would be spit up everywhere. He was almost exclusively breast-fed in the ring sling because he would otherwise vomit into my bra if I’d put him in a sling. (Although I constantly smelled of acid and cheesy milk. in spite of my, I thought, developed strategies). When he was in the ring sling, I tried to keep him in a deep squat, with his knees above his bum, like in Pavlik’s harness. His hands were beside his body, and bent in his elbows, with fists close to his face. Unfortunately, this ideal body position could not always be achieved in the ring sling due to his typical reflux stiffness, very similar to hypertonia. Most of the time, however, he was in an ideal position and relaxed. He was motorically ahead of his age, which was expected, since he was born as an (over)mature baby, in the 43rd week of gestation.

The episodes

Usually about twenty minutes after a feed, the “episode” would begin. He screamed at the top of his lungs, pushed away from me, wriggled backward, straightened his legs and popped his seat in the ring sling, got stiff from head to toe, scratched me … The episode would be worse if he ate too much. Reflux babies are simply prone to over-eating. It is because of their pain and discomfort, a breast to them is both a source of nourishment and comfort. I had to stop the feed, put on a ring sling and walk fast. (He often demanded more than this little quick-paced stimulation, but only later, with an occupational therapist, we found out that he was also sensory hyposensitive, which is a part of his neurodivergency.) We often stayed outdoors because our apartment was too small for our marathons. He liked to being carried, it helped him, which I probably knew intuitively. These episodes lasted for a few minutes in the sling. “In the dry,” without a sling, everything would quickly become unmanageable until the next episode, and then everything would start all over with a new feed…

All things come to those who wait

I just could not wait for him to sit up unassisted. To my happiness, reflux and umbilical hernia have almost completely withdrew when he was five and a half months old. A few months later he accepted solid foods, and was able to feed himself (baby-led weaning). 

Along with this, he had posterior tongue tie (a shortened frenulum *), and a frenectomy was not performed when he was born. A myth was still circulating at the time, that the frenulum would stretch out over time all on its own. Of course, that did not help me because I wanted to breast-feed him. I do not know how I did it, but I did. Three and a half years of breastfeeding, exclusively with nipple shields **, in spite of all the myths surrounding  them.

In spite of a few studies, everything actually comes to waiting-it-out: for the sphincter to mature. Carrying is actually a tool which helps achieve and maintain the so-much-needed upright position, which allows gravity to hold in the stomach content as long as possible, all while the baby matures for unassisted sit-ups.

Unfortunately, so far, I have not found any study that points to the connection of umbilical hernia and reflux, at least not a single one which does not point to midline defects. It seems to be something that pediatricians and parents empirically know. 🙂

Today, there are very few useful tips for gastro-oesophageal reflux (GER) available to parents and caretakers, so unfortunately it is not surprising that pediatricians still recommend termination of breastfeeding, rice flakes, and substitute milk. If you are struggling with a similar problem, seek help from your pediatrician, IBCLC lactation consultant,  pediatric gastroenterologist and parents who have had a similar experience. You are not alone.

Also look for a local baby-wearing/carrying support group, a sling-library, and a carrying consultant.